Jack's Kidney Adventure

424) Clinic Appointment

2011-10-21T08:55:00.000-05:00

October 20, 2011
Thursday

Transplant Clinic Appointment
Met with Dr. Lewis this afternoon for my now quarterly appointment. According to the doc, "You look great!". He went over labs; cyclosporine a little high so he wants me to do a set of three blood works on Halloween morning at 7, 9 and noon. I usually take my meds at 8.

Other than that he thinks, like he said, that I am doing really good. Always a good thing to hear. Next appt is my annual physical in March.

423) Take Action Now!

2011-09-23T11:05:00.008-05:00

September 23, 2011
Friday

On Tuesday, September 20, Representatives Michael Burgess (TX) and Ron Kind (WI) introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (H.R. 2969). Eighteen other Representatives joined them as original co-sponsors. H.R. 2969 is the much anticipated House version of S. 1454, which was introduced in the Senate in late July.

Letter sent just now to my legislators:

"As your constituent and on behalf of the more than 600,000 Americans living with polycystic kidney disease (PKD), one of the world's most prevalent and life-threatening genetic diseases, I urge you to co-sponsor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (H.R. 2969) recently introduced by Representatives Michael Burgess (TX) and Ron Kind (WI).

I am currently taking immunosuppressive medications, after my successful kidney transplant in March, 2009. My own coverage will end in March of 2012. Estimated cost (co-pay) of my meds at current prices is (with my excellent insurance coverage) will be $3132 per year. Without medical insurance to help defray the costs, current costs of these medications today (9-21-11) is $7868 a year (for MY dosages) or $650 per month.

Many people think that switching from the name meds to generics saves people from paying so much, but according to my transplant doctor and team, generics cannot be trusted to interact the same way over time, nor can their interactions with the other necessary medications be completely assessed until sometimes too late. These are my personal reasons for asking you to support this important piece of legislation.

H.R. 2969 is important bipartisan and bicameral legislation that will ensure kidney transplant recipients are able to maintain Medicare Part B coverage of immunosuppressive drugs necessary to avoid organ rejection and a return to more costly treatments. Medicare covers the full cost of dialysis for a patient�s lifetime; however, under current Medicare coverage policy, Medicare will only pay for necessary immunosuppressive drugs for 36 months post-transplantation. Once the 36-month period ends, kidney transplant patients are forced to find other ways to pay for expensive immunosuppressive medications.

According to data from the 2010 Annual Data Report of the U.S. Renal Data System, extending Medicare coverage for immunosuppressive drugs ($15,000-$20,000 per year) is far less costly to Medicare than a patient returning to dialysis ($76,000 per year) or receiving another transplant ($100,000-$125,000). As of July 1, 2011, the United Network for Organ Sharing (UNOS) reports that more than 89,000 people are on the kidney transplant wait list. Of this 89,000, approximately 5,000 are PKD patients.

Given the cost data and numbers of those awaiting a transplant, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act makes for good policy and will provide a long term savings to Medicare. Furthermore, kidney transplant patients will no long have to worry about how to pay for these important medications. Now is the time to change this outdated Medicare policy and provide lifelong access to these vital drugs, and I urge you to co-sponsor H.R. 2969."

422) Stopping Paroxetine and current notes

2011-07-28T10:07:00.001-05:00

July 28, 2011
Thursday

Bernadette called last night to adjust my meds down! Too much myfortic in my system, so we are dropping to two in morning and two at night. Good news. She said, "too much myfortic increases chances for infection..."

This morning on Morning Edition, a story on live transplant procedure that decreases rejection: check it out at Treatment Boosts Survival Rates For Some Kidney Transplant Patients.

Also, I've been writing on a post reporting on my leaving behind my long-term anti-anxiety meds, paroxetine. Never finished it cause of busyness in other venues... so, here it is from the draft. Now it has been two weeks or so without any paroxetine!

If I had continued my July 13 report I would have said that the only real difference I have noticed since quitting is having very vivid dreams that seem so real that I am not sure I am dreaming. In one instance I woke up when Liz nudged me to let the dog out at 4:30 or so... got up and took her (the dog) downstairs, let her out, stepped out onto the back porch and felt the hot muggy Austin air. I felt the breeze, gazed around at the completely familiar scene before coming back into the house and wandering towards the fridge for a cold glass of water. Then back to the squeaky door to let Chelsea in and follow her back upstairs. I got back in bed an fell back asleep.

A few minutes later Liz was shaking me again: my whole last paragraph was a dream! Most of these vivid dreams are run-of-the-mill daily living dreams rather than my more usual weird dreams. They are marked by brilliant color, clearly feeling proprioceptive sensations, and sensing that the dreams are lucid dreams.

In general, my behavior has been okay, according to Lizzie. If anything, in my attempts to watch my behavior and not "fly off", get irritable, or act crazy, I have been less demonstrative. I think she called it "in my self", but maybe she should put in a comment on this post to clarify her reactions to my reactions to quitting paroxetine.

More to come!

July 13, 2011

Wednesday

In the News: I think I have been mentioning over the past six months or so that I have been in the process of lowering my paroxetine dosage with the hopes of quitting completely. Partly this plan was instituted to decrease my overall meds use and save money, but also: I have been wanting to stop being on this anti-anxiety medication that Dr. Moritz prescribed for me sometime around 2002 or 03 (based on review of my meds lists), as I was adjusting to freaking out about having PKD and the prognosis of eventual dialysis and transplant.

# What are the withdrawal reactions occurring with paroxetine?

These symptoms may occur upon stopping treatment with paroxetine. Typically they can include dizziness, altered sensation (eg. numbness, “pins and needles”, “electric shock sensations”), sleep problems including intense dreams, , anxiety and headache.

Less common symptoms include agitation, nausea, tremor (shaking of parts of the body, eg. hands), confusion, sweating, diarrhea, palpitations, emotional instability, irritability or problems with vision (eyesight).

In some patients withdrawal symptoms may be severe in nature or prolonged. Usually, however they are mild to moderate and self-limiting and should resolve within 2 weeks of stopping paroxetine. Patients treated with high doses, those treated for longer duration and patients whose treatment is abruptly stopped may be at an increased risk of withdrawal symptoms.

European Agency for the Evaluation of Medicinal Products (2004) Questions and answers on paroxetine. Retrieved online July 13 from http://www.antidepressantsfacts.com/2004-04-23-EMEA-paxil-seroxat-warning-EU.htm

421) Bernadette Report

2011-07-12T13:41:00.001-05:00

July 12, 2011
Tuesday

Bernadette called this morning to report on yesterday's labs... and said, "Your creatinine is down to 1.5 and dropping your cyclosporine dose in the evenings was evidently a good move. It is at 145 now." In explanation, she added that high cyclosporine decreases blood flow thru the kidney and can be a cause of raised creatinine. This is a good report: next labs set for July 20th.

420) Transplant Clinic Scare

2011-07-07T12:03:00.008-05:00

July 6, 2011
Wednesday

After the clinic called last week and change my appointment, I arrived at NAMC this morning at 6:50 am. for re-registration (a task required every three months) and then labs, and then my usual clinic visit at 9:10 am. After lab work, I stopped in at the cafeteria for two breakfast tacos and coffee with my 8 am meds; and settled in to reading my new text for the Fall Semester SFBT class.

At the clinic things started being bothersome as Maxine hurriedly cuffed my arm and pumped me up for my BP while asking me questions and rushing through her tasks. My BP: 157 over 70 something... to which I mumbled something like, "probably cause I just sat down and am talking..." Then, after 10 minutes or so (reading time again), Bernadette enters and informs me that my creatinine is up to 1.7, my hemoglobin is down, and my salt is high. Great news!

"One point seven? That's not good. Whats up with that?" She shrugs... and we briefly discuss whether it is really a bad thing or not.

Dr. Lewis comes in and asks me how I'm doing... "okay" I say... "cept for my back pain... and, I know what thats from... hauling rocks the other day..." He has on the table, listens to my chest and back, asks about swelling, has me lay back on the table while he checks my groin and pokes at my new kidney and abdomen in general. Pulls me up to sitting and goes over to look in my record (All this is his usual protocol).

Looking in there at the most recent labs, he seems worried (to me) about it and shares, "After two years it is really too late to be rejection..." and I wonder if he is talking to me or himself. Rejection? Yikes? "So what do you think it's about?" I ask. He runs through a range of things (which I don't exactly rmemeber cause I'm freakin' out), such as "a fluke", "medication issue", or some other unknown problem. He excuses himself to go find the rest of my record and check this out further, commenting... "...they've thinned out your record... excuse me for a few minutes while I go find what I need..." and out he goes.

I sit there in my brain feeling guilty. I must have brought this on myself. I've been too late on my meds too many times... "I'm lazy and no good! (I hear in a parental voice in my head). "Boy, now I've done it... I've ruined my new kidney..." I fret. Then I try to clear my head, take some deep breathes, wiggle my sore shoulders... stand up to get my text book. "I can't focus on THAT right now!" So I sit back down and begin thinking along two channels: don't worry until there is something to worry about & boy, this is a GREAT time to end my anxiety meds!

Dr. Lewis returns and says he thinks he wants me to get two scans so he can look them over, and get scheduled for more labs in a couple weeks and then we'll see whats going on. He asks about my BP and I say it has been running in the mid 120 over 70's usually and he nods at this data. I ask about quitting the Paroxatine and we agree that this is as good a time as ever.

He honestly says he wants more data before making up his mind about the 1.7.

Maxine comes in and asks if I can hang around today and get the ultrasound and the DMSA renal study. "Sure." So, she goes to set them up while Bernadette works up my next appointments and med chart. Maxine returns: the DMSA is scheduled for 1 pm and the ultrasound they'll "squeeze in" before that. First I have to go back to the lab for another blood draw to check my iron.

After the quick lab I trek over to the imaging waiting room and munch on Lorna Doones, drink more coffee, and read another chapter of my text before they are able to "squeeze me in" for my ultrasound. The ultrasound goes easily... Robert the technician is training a young tech on the newer machine than she is used to and she tells me, "I've been doing these for years; he is just showing me how to use this new machine" as if to assure me she knows what she is doing. I'm fine... whatever. They talk about how to do this and that the same and differently while I lay there. She did use warmed lubricant, which I am in favor of. I had to fill my bladder with four large cups of cold water so I was shivering when I got in there. The warm goo and heated blankets helped me settle right in to a comfortable experience.

Then it was back to waiting for my 1 o'clock scan. I walked around in outside in the 99 degree sun for more warmth. The DMSA scan was conducted by Mark (See Post # 337 & 338, March 2009) and we spent some time catching each other up as he set me up for the scan. This scan takes 30 minutes of stillness and I fall into a slumberous meditation / sleep... and before I know it it is over and I am up and ready to head out. Mark asks me what I am driving these days (still the T-100 of course) and he wonders how I would compare F-150's with the Tundra before I leave.

Later: Bernadette calls me at home in the evening to say that Dr. Lewis looked at the scans and they look okay... is concerned that my cyclosporin (Neoral) is higher than it should be so he wants me to take off the little one (25 mg) at night and she'll set up labs for next Monday, five days from now. I ask about my scare and she seems to think things are A-Okay for now. Whew!

419) May Clinic Visit

2011-05-18T13:11:00.001-05:00

May 17, 2011
Wednesday

Clinic visit with Dr. Lewis. Scrotum is healed sufficiently. Kidney function is fine. Next appointment set for lab work early July and clinic on July 11!

Now onward for the Kerrville Folk Festival!

418) Update & Mom's Day Weekend

2011-05-07T09:28:00.006-05:00

May 7, 2011
Saturday

Scrotum Update: It is Saturday again and I thought it a good idea to update readers on my last surgery: have been back to Dr. Lewis for two visits and all is healing well. The fluids are gone and so far not returning. There is a nice little scar. For a week and a half afterwords I wore a jock to keep things secure, and had some generalized pain, but really; the healing has been less painful than I thought it would be.

Mother's Day Musings: I am home alone this weekend; Liz with her friends at their annual "girls weekend" at Rocky River Ranch and Shayna is in Houston at a soccer tournament, so Chelsea and I are here for a quiet weekend of yard work and reminiscing about our mothers and the women we have made into mothers. Many of my friends are putting their mom's pics up on FB as their profile pics this weekend, and in finding one I liked of my own mom, from my early, formative years, it brought back many memories. Many are quite hazy now and yet when I look at them, I have this longing attachment way down deep. This year that feeling is especially poignant since the passing of my older kids' mom, Carol, last fall. I feel, in addition to my own sense of loss, their new sense of loss -- their first Mother's day without their mom. And that associated sense links to my own, more healed sense of loss and brings it back toward the surface this weekend.

I honor both of those women today and tomorrow will add the mother of my last child, Liz.

417) Day Surgery on the Old Scrotum

2011-04-09T05:47:00.018-05:00

April 9, 2011
Saturday

Home Report: It is early Saturday morning and I am up by myself... couldn't sleep any longer so I got up to post on my hydrocelectomy yesterday. Since I got home from the hospital at about 6 yesterday I have been off and on sleeping off the anesthesia. Throughout the early evening, after snacks of bean and cheese nachos, I mostly slept, according to Liz. Then I was up for awhile to eat dinner an dozed through some TV shows and a movie (Toy Story III) and finally went up to bed before ten. This pattern of returning from anesthesia-land seems like my norm and is really a quite enjoyable way to return to reality. Now I am up at 5:45 am.

Pain? Yes, there has been some pain through last night and right now as I sit at the computer. By about 8:45 or so last night I was having some localized pain and took two Tylenol. Describing the pain is easy to do for any men reading this post. It is like someone squeezing your balls ever so slightly harder after you feel that pain, but not to the point where you must scream out. I can't think of a way to compare it to any pain I know women might have.

I never like taking the druggy pain pills they allow me to take unless I get to really suffering. Shuffling around on the couch watching TV wasn't really that helpful for the pain so that is when I went up to the cool bed sheets where I could spread out and lay there in the evening breezes coming through the house's second level. When I lay there quietly and still as a mouse, I feel no pain and drift off to la la land again and again, only waking up when Liz comes to bed or at the end of a dream, etc.

So, back to the beginning of This Kidney Adventure: Ever since my transplant, my scrotum had been fairly swollen and never really quite went down to it's normal "hanging around and down" self. Over time, in fact it started growing... first like a tennis ball... then like a softball... and then the Doc and I started planning for yesterday's operation.

Liz took me to NAMC at 8 in the morning for my 9 o'clock check-in time cause she had a workshop to administer early. I had thought I would sit and grade students' group observation papers until 9 but the guy I complained about back in Post #413 (¶ 7) was checking folks in and was bound and determined to get me checked in expeditiously this time. So he got Andrea right out there to rush me down to the prep room to do my paperwork. The nurse down there said, "He's an hour early. We don't even have the room ready!". So Andrea took me back to her office to complete the paperwork. That took about 20 minutes and then we are off and back down the hall for the second time... the room is ready and I slip into something more comfortable and meet my nurse, Crystal of the fast talking variety. I can tell she is competently going thru all her spiel efficiently in a way that they explain the 'rules' when you rent a car. However she is nice and playful and we get along quite nicely. She explains that it will be some time before we actually do any prep so I can grade my papers or take a nap. Somewhere along in this time frame, Dr. Lewis stops by to say "Hi" and I ask him how many he is doing today and he replies that it is only me. As he leaves I encourage him by saying, "Do good" and he replies, "Always" and smiles his way out.

I grade about 5 papers... they are written better than I anticipate and actually have some interesting reflections that tell me the students are actually learning the materials... or, at least referring back to the readings and text to sound like they know the materials. This makes me happy and contented enough to lay back after reviewing them, and snooze away the time til Crystal returns with Liz, an attractive nursing student from ACC with beautiful sparkly grey-blue eyes. Crystal asks if Liz can set my cannula for the saline drip. What can I say but "Sure" to this request for this youngster who wants to learn. I inform them both that I don't use lignocaine cause the pain doesn't bother me anymore. Crystal is very happy about my letting Liz experiment on me and Liz and I talk about her classes and what I teach and how nice it is to do practice learning at NAMC. Throughout the little cannulation, Crystal hovers over Liz, walking her through and sharing with her little tips that make it easier, like holding the cannula, removing the tourniquet, and flushing with saline. Liz does a good job and we all congratulate her and she is happy and I go back to grading and snoozing until this Asian Ansethesia nurse whose name I cannot remember (and I think of as AnesthesiAsia) comes in to explain they will be knocking me out and do I have questions. She and the Anesthesiologist (who came in earlier) both look back into my throat and are pleased with whatever they see. I know this because they NOD agreeably.

So, pretty soon Crystal and the surgical nurse (name forgotten) come to get me and we rush down the halls careening around the corners (I always LOVE this part) and thru double doors that magically open to accept my gurney... and into the bright white operating room, parallel parking beside the operating table. I'm thinking, "How am I going to successfully and gracefully shuffle my fat ass over there..." as AnesthesiAsia says to me: "I'm going to start giving you something to relax... do you feel it......" and then her words are drifting away and everything is okay.

My next recollection is waking up groggily with my Liz coming in the door, saying something, and I happily drift back off... all is hazy but I do remember her reading her book and me waking once in awhile and her giving me sips of water and telling me Lewis said it all went fine and that comforts me back into dream-land. During one of my visits back into waking reality Liz says we are going home and I don't have to stay overnight. During another one she tells me something of her workshop and how it went. The best thing about "recovery" room is that one doesn't have to feel bad about drifting off to sleep in the middle of a conversation with one's wife. There is permission, due to the circumstances, to just nod your head and close your eyes and drift off. How nice.

So, this goes on for some unknown period of time until Lilabeth the nurse comes in to say we can prepare to leave. I can get up and put my clothes on, Liz can get the car and we will meet her out front. My Liz takes off to call Shayna and get the car and I stumble around and somehow make myself put on my pants and shirt and stuff my flannel shirt into my brief case and decide it is too much trouble to bend over to put on my shoes... simultaneously deciding to keep my bright yellow hospital socks and give them to Shayna as my home-coming gift.

Lilabeth comes back with the release forms I sign and a wheelchair and wheels me out to my waiting carriage to drive me home through the Friday Five O'clock Traffic. I am glad that I can put the seat back and drift off to sleep again while Lizzie drive us home. "What a day", I think. Sigh. "And I am still alive" I add. And I am so happy that I'm still on the planet and I've got my Lizzie as my driver... and helper... and partner.

416) What's going on with My Fortic?

2011-03-26T09:00:00.009-05:00

March 26, 2011
Saturday

Report: So, at the end of the day yesterday I am sitting at work and Bernadette calls and says she is surprised I answered the phone at 7 pm on a Friday. "I'm the only one here... on a day we are officially closed" I respond. "I am the last one here too", she replies. She has not called to chat, however. They got the results back from my labs on the Myfortic: "You're myfortic levels are non-existent!" she states. "Doctor wants you to take 3 in the morning and the evening to see if that gets the level up." We discuss this for awhile and she wishes me good luck in my upcoming procedure next Friday and we wish each other a nice weekend.

Transplant Clinic: Liz and I went to my clinic appointment last Thursday, the 24th, and Dr. Lewis gave me the once-over, pushed and prodded my abdomen, looked down my throat, listened to my heart, etc., and looked over my last labs (except the Myfortic, which takes longer to come back). He reported that my creatinine clearance is 1.3 and my triglycerides are much better, down from 600-something to 300, which is still high but he likes the decrease (they should be in the 150 range). We talked about lowering my paroxetine, which he got a MedCo notice about... I said I have been wanting to get off it for awhile now... so, he suggested I take it every other day instead of every day. Liz will be the judge of if that is a good idea or not, based on my behavior.

In the discussion part of the meeting I brought up my concerns about having to take 2 BP meds a day to now maintain a healthy blood pressure, whereas for years I was taking half of that and maintaining the BP we want. "Is that okay? Seems like taking twice as much for the same result is not good..." "For your situation, I am not worried about that", he replied. I don't need to raise my BP worrying about my BP he concluded. So, I won't. But I still wonder why...

Finally he asked if I have any questions or concerns about my upcoming hydrocelectomy on April 8th. Nope. Liz wanted to know how long I have to stay in the hospital... may get out later that evening, or the next morning. Depends on how it goes. He concluded, "See you Friday, Jack", and Bernadette came back in to deliver my new med sheet and said Lewis doesn't want to schedule next appointment til after the procedure on Friday the 8th.

415) Happy Birthday

2011-03-09T17:36:00.003-06:00

March 9, 2011
Wednesday

Happy Birthday today to Mordechai the Miracle Kidney! Two years and filtering fabulously!
I am so fortunate. Thanks to friends and family who have supported me thru this whole adventure. And to Dr. Richard Lewis... my hero!

414) Update on my next procedure

2011-03-06T15:55:00.004-06:00

March 6, 2011
Sunday

Update: Well, about the only thing mentionable up here is that I recently joined a FB group of my old old old high school chums and that is bringing up all sorts of old memories and thoughts of people and all. And, there are probably many of those folks who don't know about my kidney adventures so they may be visiting up here. I welcome them up here and hope this blog can be an interesting and informative read.

After much back and forth about scheduling, my next little "procedure" is finally on for April 8th cause the doc and I couldn't find any day earlier when we could both be at the hospital.

413) Annual Transplant Clinic Appointment

2011-02-25T09:18:00.008-06:00

February 24, 2011
Thursday

Preparation: To prepare for my annual clinic visit and evaluation I have to get extra blood work and do a 24 hour urine collection, which I schedule for a "Sunday" for obvious reasons. Maybe they aren't so obvious to you readers who don't have intimate relationships with the medical community, but all my pre and post transplant friends will understand... and will also probably find this next little story amusing.

On Super Bowl Sunday I woke up early and remembered that it was my day for my 24 hour urine collection. I had already found the collection bottle that the clinic gave me back in November, which was at the bottom of a pile of stuff in the back seat floor area of my truck; washed it out; and put it up on the back of the toilet for this procedure. So I peed, tightened the lid and carried my container and myself down stairs to breakfast. This bottle becomes your appendage for the day... so, you don't go to the park or out shopping, etc. I filled it throughout the day and superbowl and evening and night until the next morning; when I had to take it to the lab with me to turn it in and get my blood work. Well, the receptionist who usually checks me in says, "What're you doing here today? I don't have any paperwork on you..." and I stand there holding my brown paper grocery bag like a bomb... sure everyone knows exactly what it is rather than a bomb. She calls over to the transplant center for my paperwork and they reply that my appointment is NEXT Monday.

I sheepishly remove my brown paper grocery bag and myself back to my truck and back to the house, where I empty out the collection of my precious bodily fluid, wash out the bottle again, and hang it out on the back porch to dry. I try to think of it as a practice run.

This last Sunday I am ready again to collect urine for the lab! Same procedure... same brown paper grocery bag sitting carefully at my feet as I wait for the "check in" and lab work Monday morning. Peggy the lab tech laughs at my story.

One thing I noticed and later asked Dr. Lewis at my appointment this afternoon: Why is it that the first Sunday I collected the total amount was a little less than half the amount I collected this past Sunday? I mean... Super Bowl Sunday shoulda produced much more liquid, right? Dr. Lewis shared with me that urine output can fluctuate greatly on any specific day and it is normal for people to pee twice as much on some days and half as much on other days. Huh!

So, the report from the annual visit. First, my trusty scribe, Liz, wasn't there cause she is hosting her School Social Work Conference this week. I had to make my own notes! Secondly, Maxine the nurse didn't realize it is my annual so she starts with reminding me that my next visit will be my annual. I correct her and she is a bit flustered by that news. She rushes around in and out to get the necessary forms and annual questions ready. Takes my BP and it is 170 over something.

I recall to her a fight I had at the hospital registration desk cause I got here almost an hour early today, planning to check in, get some lunch, and read a journal. The check in guy forgot me and I sat waiting for most of that time. And my weight it up too. To 185! I am thinking, "Boy, they let me go to appointments every 3 months and things go down the drain..."

I nice pharmacy woman comes in to go over my meds and she still has the old list that changed since... we update and she makes notes of the way it is supposed to look. Then Bernadette comes in and we visit briefly and she lets me know that Dr. Lewis is 'on time' today.

Then he comes in and we shake hands and he gives me a once over physical prodding and looking at. I talk to him again about my hydrocele, which I don't think I previously mentioned on this blog. The hydrocele has been getting larger and we (Dr. Lewis and I) decided today to "drain the sac". It'll be a one-day procedure where he'll cut a small slice in the scrotal sac and drain the liquid and see if there is anything to do to ensure it doesn't recur. Chance of recurrence is about 20 to 30% based on my web research.

In looking at my lab results the doc reports that the kidney is fine. My 24 hour collection is used to check out filtering rate and it is excellent. My creatinine level is 1.3 which is good and the cyclosporine levels are good. He is concerned about why my myfortic level is low so he is adjusting those meds so I again need to take 2 twice a day rather than one and we'll check it in a month. Dr. Lewis is also concerned that my cholesterol and triglycerides are high and so he is upping my Crestor. These we'll also check in the next month.

And finally, the doc wants me to double up on my BP meds (linsolpril) and if I get too lightheaded I can either split the times or back off again. Bernadette asked me to do a BP log again and email her the results in a week or so.

So, there we have it. It is now almost two years post Mordechai's joining my other two kidneys and he is doing quite well. Now I need to stop celebrating and take care of my diet and other health concerns.

412) Blog Leaping

2011-02-10T17:28:00.004-06:00

February 10, 2011
Thursday

News Brief: I am now doing some posting on TNOYS new blog. My first post is entitled "Oh no! The Sky is Falling! The Sky is Falling! On the TNOYS blog, I will be posting about "best practices" in the strengths-based approach to working with youth and families, our trainings, and possibly a supervisor's corner kind of thing. I will also continue on this blog as my kidney adventures continue. For example, next week is my annual review and appointment at the Transplant Clinic! Stay tuned...

411) 2010 Year End Update & Colonoscopy Report

2011-01-06T14:47:00.033-06:00

January 6, 2011
Thursday

News Brief: Three pieces of news for youse ~~
1. Texans can now register to donate organs on their auto registration renewal website.
2. If you watch Desperate Housewives on ABC TV, the character, Susan, after being trampled in a mob scene, is going to have to be on dialysis beginning this new season. We shall see how this dialy-drama progresses.
3. My agency; TNOYS now has started a web log here on Blogger. I don't think we know exactly how we are going to use it... but, if you are interested, check it out by clicking here.
5. A good read on the current "state of union" kind of post on dialysis... calling for a unified approach for "better dialysis". John Agar, in the first post on the Fix Dialysis blog discusses his definition of better dialysis, and calls upon users of the web to come together to found on basic blogsite for a unified approach to blogging in support of better dialysis. Read more at http://www.fixdialysis.com/#

2010 Year End Update: One of the things about being a kidney transplantee is that once we have a new kidney we are in better shape and happier and yet there are a number of other medical issues that continue to keep us involved with the medical community.

As I have reported in this blog, there is a continuing regimen of medications that must be monitored and adjusted forever. I haven't recorded all my medication adjustments over the past year, but I can tell you that there are adjustments about every month or so. As the transplant center staff review my bloodwork every month or so, they find that I need more or less of the following meds to keep my system in the balance it requires for optimum functioning. It is very important for my good health that cyclosporine and myfortic remain effective. For the most part of the last year, in addition to these anti-rejection meds I have also been taking levothroroxin, crestor, lisinopril, flomax, oscal, calcitrol, and omeprazole. Only the oscal (beginning after my thyroidectomy) has been changed significantly as my remaining parathyroid glands got to working (see post # 408).

This past year has included some medical procedures as well... primarily my parathroidectomy (reported in post # 405) and a recent colonoscopy that I haven't written about to date. After having it rescheduled several times, Dr. Poreddy performed it on December 20th as part of my Winter vacation. I didn't really realize at the time that he intended to do the colonoscopy and an esophagastroduodenoscopy (EGD) to look up and down both sides insides.

As I have said many times in the past, the conscious sedation drugs (sometimes called 'hypnotics') they use to put you out for these delightful-sounding procedures are among the 'best' (meaning giving one a really nice drugged out feeling) I have ever taken. During the procedure one has a sense of what is happening while feeling really relaxed and comfortable. Once in awhile there are some poking feelings and the patient can comment, causing the doctor to adjust their endoscope and keep it on track. As the patient comes off the meds, they have a sense of waking up in an altered dream-like state and I usually have very scattered, in-and-out thoughts and memories (reminiscent of Billy Pilgrim's popping in out of segments of his life) of the span of time on the medications. Going to work or out for a walk in the park is out of the question. Eating tasty food, laying around on a comfy couch with a favorite pet or stuffed animal, and listening to music are my favorite things to do for about 6 hours after the procedure. I like ice cream, jello, pudding, and a soft pillow during these times. I have never experienced much after-procedure pain at all.

So, Liz was there to talk to the doc after the exam was completed. According to Liz, Dr. Poreddy reported that... "His upper GI tract shows a lot of inflammation and he has colitis, diverticulitis, (...and probably a couple of other itises...). He needs to begin taking omeprazole and make an appointment to see me in 2 weeks." I will spare you blog readers the pictures we have of the tunnels of my insides. Now that the holidays are over, I will make an appointment. I have been taking the omeprazole and while visiting Joan in Dallas, she made me drink some fiber powder in my coffee each morning.

In general, 2010 has been a healthy year for me. Mordechai the Miracle Kidney is doing great and I am back to my regular duties, behaviors, and foibles. Although I am fine, the environment outside my little family system is going to Hell in a hand-basket. My larger professional system is splintering and possibly coming apart from the loss of federal and state funding for training front-line social workers. The even larger social services system is suffering state funding cutbacks by a state governor who believes in tightening the in-state budget to convince the country of his financial prowess: "Texas is one of the few states with a surplus" he claimed during the last state election, as he systematically cut social services to further disenfranchise the already marginalized citizens. "Don't get me going" part of me says to my blog-writing part. This blog is about Jack's KIDNEY adventure, not politics.

Closer to home, just one sub-system out from us, my adult kids and our brother-in-law's mothers have passed on during the past year, causing us all much grief and pain and adjustment. We are reminded that life is precious and, at least from MY perspective; we owe it to ourselves to live our lives like we would like to be remembered by those who will miss us the most once we have moved on.

410) Transplant Clinic Dr. Appt.

2010-11-11T20:24:00.003-06:00

November 11, 2010
Thursday

NAMC: Appointment with Dr. Lewis. He checked my throat scar and the swelling that has now gone completely. All good. Prodded my body and checked my labs. The report: everything is just fine. Parathyroid glands are awakening... my calcium was high.

So I can go from my 1, 2, 1 regimen down to 1 Oscal in the morning and one at night. As my parathyroid glands wake up they start producing calcium and therefore I need to take less oscal.

In short, labs look good, parathyroid glands are doing fine, BP and creatnine is great. I'm a clean machine! Next appointment set for February, with annual meds before the appointment.

409) Texas End Stage Renal Disease Summit

2010-11-11T12:45:00.019-06:00

November 9, 2010

Tuesday

Doubletree Hotel Austin: Ben Wislinski, from the Dialysis Patient Citizens group in DC had asked me to sit on a panel of patients who selected different modalities for their dialysis. So here I am at the Doubletree in a big conference room, seeing folks I haven’t seen in a few years: Chad from the DPC in Washington, and Herman the Nurse and Suzanne the Administrator from El Milagro. I spot Herman and Suzanne and walk over to join them at their table.

This summit’s agenda includes:

1. Breakfast;

2. Welcome remarks from Chad Lennox;

3. Two doctors discussing advancements in renal home therapy

----A. Dr. Robert Farkas on the benefits of home therapy as a treatment modality, and,

----B. Dr. James Sloand from Baxter discussing future trends in home renal therapy

4. Living with ESRD: A patient’s perspective

----A. Shelly Inglis, Home-Hemo patient and DPC Patient Ambassador

----B. John Howell, former Peritoneal Dialysis (PD) patient with a kidney transplant

----C. Jack Nowicki (Me), former In-center Dialysis patient and DPC Patient Ambassador with a kidney transplant

5. State medical services available to ESRD patients ~ Lisa Glenna, Texas Kidney Health Care Program

6. Healthcare issues and the 2011/2012 Texas Biennial Legislative Session ~ State Representative Elliot Naishtat

7. Renal home therapies and public policy ~ Chad Lennox, ED of DPC

The first speaker, Dr. Farkas comes across as a unabashed proponent of peritoneal dialysis, reporting how much safer this modality is today than in years passed. He discussed the evolution of PD, new research on dialysates, and all the various issues about the cost of home modalities versus in-center treatment. Dr. Sloand spoke about the future for dialysis modalities, touching on the current modalities in more detail* and forecasting the future. He reported on improving outcomes through “comparative effectiveness” and what will be “good outcomes for less money”. He mentioned that present research shows that survival rates between PD and Hemo outcomes are basically equivalent and that the verdict on Home-Hemo is still out (although the present outcomes are encouraging).

In the future, Dr. Sloand predicts (or forecasts) the following: 1) In home efficiency of PD solutions will increase (finding new and better dialysates) and better filtering membranes; 2) Caregiver connections and education for them and patients will increase; 3) Immediate online support and education, feedback, and problem-solving to patients and caregivers when mistakes are made; 4) Automated, wearable artificial kidneys (AWAKS) will be available and they will regenerate the dialysate; 5) HHD will be as “incredibly” easy to use “as buttoning a shirt”, and they will warn patients when things are going wrong; and finally, he sees a time when 6) implantable renal replacement therapy (RRT) will be available that will work 24/7 using a human nephron filter (glomeria with a permeable sieve). These innovations and additions to the doctor’s arsenal will make kidney failure more treatable and cheaper on the whole society.

From the other two patients talking about their preferred modalities of dialysis I learned some interesting things. John Howell, in discussing his experience being a PKD victim in a family where PKD was rampant, said that he had heard early on that in-center dialysis was a “death notice” and therefore, as soon as he could, he chose PD as his modality. I remarked to him that I am glad I hadn’t heard that. Shelley Ingles has been through it all, and a few times, I might add. She is currently on Home-Hemo and touting it for the flexibility it allows her in traveling. When she has difficulties (or, had difficulties) she goes for in-center treatments in San Marcos’ center. She also was on PD and had no problems with it for some time before she had a transplant. I think her transplanted kidney gave out after about 10 years and thus she is now on HHD.

Since we are getting ready for an important legislative session here in Texas, and that involves TNOYS, I was particularly interested in hearing Elliot Naishtat’s report on what we can expect in the lege. After telling his personal story about coming to Texas from New York as a VISTA Volunteer in the mid-60’s, he reported on the changes we can expect based on the Republican gains in the Texas Legislature: basically that we will see major cuts in the health and human services areas. He focused on the possibility of further cuts to all HHS programs in order for the state to live up to the governor’s promise of no new taxes.

As it stands, the state HHS program is going to the lege with a proposed budget that cuts all the prevention and early intervention (for delinquency and child abuse) services by 84% since the HHS programs cannot fathom cutting “critical services”. Training has already gone by the wayside and state agencies are being asked for further 10% cuts in the near future. Also, Rep. Naishtat mentioned that there is the possibility the Republican-run lege will attempt to legislate the state pulling out of the federal Medicaid program. The state budget shortfall of approximately 18 to 24 billion dollars, along with the governor’s “live within our means” motto will make a huge dent in HHS services, school financing, and any other places that are not seen as absolutely necessary.

Chad Lennox closed the summit by talking about ESRD patients' opportunities for working through the DPC and asked everyone to keep abreast of ways they can advocate for the continuing needs of all kidney patients.

408) Discharge Day

2010-09-24T07:45:00.004-05:00

September 24, 2010
Friday

NAMC 4-N: Dr. Sankar popped in at 7:30 am to report that my overnight calcium level is back up to 8.2 so I can check out this morning. He wants to see me in his office next week, where we will do another calcium level check. He is happy that things seem to be going well with my calcium. He is going to the nurses station to write up discharge notes and I'm outa here!

Afternoon: Home again. Not going in to the office this afternoon. Back to work on Monday. Today is rest and taking lots of Calcium... 500's 4 times a day. Bernadette cautions me not to take them with anything with phosphorous cause it'll bind with the calcium and escort it right out the other end. Only useful to keep my level up when taken without food.

407) Check out day?

2010-09-23T10:34:00.007-05:00

September 23, 2010
Thursday

NAMC 4-N: Dr. Sankar stopped in early this morning and shared that he thinks the calcium level is slowing and beginning to level off. As we discussed before it dropped from 10.3 to 10 to 8.4 and then to 8.2 where it was at last reading. He anticipates it will level and I should be able to check out of here early evening today. Nurse Barbara was in here while he reports and will be reporting back on how I am doing, plus there is more blood work to check the calcium level today.

A few minutes later, Dr. Lewis stopped by to see me and I told him about Sankar's report. He sounded happy about that and left. Then Bernadette came by and we discussed the whole thing about taking more calcium, levels, being careful to not go from hyper parathyroidism to hypo parathyroidism, etc.

Throughout all this I was also nibbling at my breakfast and trying to slip into the day... wanting to take a shower and get back to finishing grading papers for the class.

I'll be adding to this post as the day goes on...

Later: 1:30 pm... Barbara the Nurse runs in to tell me my morning calcium level: 8.2 again... it has stayed the same as last one... so maybe it is leveling... Barbara will call Doc Sankar and see what he thinks.

Later: 6:00 pm... Barbara the Nurse came in just before leaving for the day and said that my latest blood work from this afternoon shows my calcium level is down to 7.4! DAMN! Dr. Sankar hasn't called but we know that this lower level means I stay another night. Nurse Barbara won't be working tomorrow so we said our goodbyes with a hug. She is one fine nurse!

A few minutes later Lizzie and Shayna came to visit and stayed til about 9 watching the new season shows on TV. Next blood work is at 3 am. Nurse Fe checked in and we discussed the situation and she gave me meds and calcium and my stomach shot and we're off to another evening. At least there is good TV tonight. And, I have all the time in world to continue grading my papers. Onward thru the fog!

406) Calcium Dips

2010-09-22T09:27:00.006-05:00

September 22, 2010
Wednesday

NAMC: Up by 6 am cause lots of poking and testing here. I started playing on the Mac Dr. Lewis pops in about 8 and reports that my Calcium looks good and I may be able to check out today. WOW. Bernadette pops in an hour or two later and asks if Dr. Sankar embedded a piece of my parathyroid in me somewhere and my completely confused expression told her I had no idea what she was talking about. She says, "sometimes they put a little piece of it back in you somewhere to get the extra hormone out and back into your system." Weird!

The rest of the morning goes by expectedly: Eunice the Nursing student from ACC comes in to take my BP, temp, and pulse a few times... and is attended by her instructor, Sherry, Cheryl, Ashley, or some other similar name. I have confused it several times already... Barbara comes by to say "HI", gets me some Nursing station coffee to supplement the food service coffee.
I must say though, the food at this place is the best hospital food I have ever had! My over easy egg, hash browns, and bacon this morning were wonderful. My lunch of a vegetarian quesadilla filled with zucchini, grilled onions, and peppers and here-made pinto beans was also really tasty. I think I may have written about the food here when I got my transplant too. Lizzie comes over from the school and joins me for lunch, and eats my salad (which I really ordered for her anyway). She's off back over there for a meeting from 3 til 5. If I stay tonite, Shayna wants to come up to see me.

Later: So, finally, at about 2, Dr. Sankar pops in after surgeries and reports that all is going well: my calcium is dropping just he thought and he believes it'll drop a bit more before starting to rally. He also told me about a reading I hadn't heard about. It started at 10.3, then dropped to 10 and last time dropped again to 8.4. He anticipates another drop and then maybe it'll start going up again. He is doubling my calcium intake to rush the whole process along.

I called Liz with the news and post it here for the rest of you arm chair physicians.

405) Parathyroidectomy

2010-09-21T18:53:00.040-05:00

September 21, 2010

Tuesday

NAMC ~ 7:05 PM: so, here we are again, getting signed in and preped for another surgery. These beginning notes were taken by Lizzie while I acted as the "patient". Now, if I can only read her notes! We are in the ambulatory surgery wing with our first nurse, Jay. He is giving us the lowdown on what all we can expect, when it should occur and setting my first IV feed. Quite a while later, it seems, my anesthesiologist, Dr. Lima enters and we discuss my knock out drugs... in this instance a "general anesthetic". She promised to take good care of me and Ilda the Nurse (2) and I talked for a good while, while Liz kept calling Shayna unsuccessfully 13 rimes to get her up for school. Finally, she was able to reach her with a TEXT message!

Ilda rolled me down through the halls... and as a rider on the gurney, mostly we notice the hall walls and ceilings going by... and into the O.R.,where I first see Dr. Sankar. He is smiling his usual self and I quickly ask my two questions which I have been concentrating on remembering since we arrived: 1) can I get a room up on 4 North, the kidney floor? Sure. And (2); can I see / have the overgrown parathyroid? No. Its just a little brown peanut. We have to send it to biopsy... he reports. Okay.

Dr. Lima brings over my ultra-seal disposable face mask and gently places it over my nose and mouth and before I can say, "Winken, Blinken, and Nod" I'm off in the ozone and then I hear lovely Lizzie's voice saying something like, "Jack... here's your meds... time to take your meds..." and she holds them up to my lips, one at a time, in a little paper catsup cup. This is a very complicated process over and over and over again, for drowsy dopey me. I think I said something like, "Hooray. I am still alive and on the planet...", maybe. I was very sleepy and immediately went back off to dream-land. This part of operations is definitely my favorite part: in and out of consciousness with not a care in the world, cept of course knowing I am still IN the world. Liz notes in her notes that the time is 9:30 am.

So it goes... off and on and on and off for some unknown length of time, Liz is gone and left me with "sweet blond" (<-- Liz's notes) Nurse Valerie (#3) who is very sweet (and I don't use "sweet" hardly EVER). Every time I come up the stairs to consciousness she is there, telling me I did good and all is well, etc. I find out much later that the reason I dreamed of Liz bringing me my meds was that she WAS doing so... she had gone to the car to get them... and been allowed into recovery cause none of the staff can handle "outside meds" cause they are "unauthorized" and may be laced with poison or some such thing. Finally, at 11:30 I am mostly awake and it is time to be rolling on up to 4-N. Valerie kisses me goodbye, gently on the cheek, hugs Liz and sends us away to new nurses and adventures in hosptaland. (So far, Nurse Valerie is my favorite, as you can probably guess.)

We arrive to find Nurse Barbara and Cowgirl Sabrina who I recognize from my last stay on 4-N, a year and a half ago now. They see lots of patients but it only takes a few minutes to remind them who we are. Both of them are like "the best" and we are immediately kidding and teasing and making a fun time here on 4-N.

Bernadette stops by and we talk meds and tell her the surgery evidently went well. She has touched base with Sankar and relays his message of success and Liz tells about her brief talk with him just after he finished the operation. I can tell Lizzie is relieved. She and I set in to making this room our room, getting out the lap top and spreading our junk around in a homey way. They bring me "clear liquids" and I get my first coffee of the day (2 big styro-cups) along with orange jello, mushroom soup (clearly not clear), iced tea, apple juice, milk (clear?), and banana pudding. I drink coffee and pump Liz for all the answers about what happened while I was in La La Land.

She has already called my Dad, her Mom, John & Katie, Kim, Shayna, and Jen. We talk about how happy we are, how good life is, de tails of the day, etc. etc. while the nurses come in and out and measure all my bodily fluids and measurable signals of health. I find I have to stay in bed today and pee in the jar. I'll wait to poop til tomorrow, thank you.

Then, another meal comes! Its dinner! Two fajitas, beans straight up, ice T, a salad with French dressing, and more banana pudding, yum yum... Liz gets one of the fajitas and the iced tea and I gobble down the rest after we have talked and talked and watched the ABC Evening News. The she leaves to go home to Shayna.

Nurse Reba takes the floor after Barb and I don't recall yet much about this shift. I didn't get to see "The Good Wife", so I watched "Parenthood" which was pretty lame tonight. I busied myself writing the Ode to Liz, two paragraphs below...

The over-night crew comes on and it is Nurse Lissy, who remembers the thank you letter I sent when I left after the transplant, and which hung up in the Nurse's lounge for many months. This tidbit makes me feel very good that they so graciously accept my accolades last time.

+><+><+><+><+><+><+><+><+><+><+><+><+><+

Somewhere in the beginning of tonight's post, I wrote:

"I STARTED THIS POST AND THEN, ALL OF A SUDDEN AN OLD TUNE POPPED INTO MY HEAD... and I dedicate it to my BFF, main squeeze, love of my life... Lizzie!"

Here I am again...back in that same old place again,

seeing all those friends again... lyin' here dreaming of you.

You stayed here with me again... and sent in the light again,

and gave me my meds again... as I woke up to you.

Yeah, I'm back on 4N again, resting in my room again,

and flirting with those nurses again... jest like an old fool.

I'm missing you here again... even tho you just left; when?

Here I am - can't find my pen...even tho you findin' it ain't cool.

Hope you're smiling now on the couch in the den, knowing that YOU are the comedienne

and that I'll take a taxi in the pouring rain ...cause I'm always comin' home to you!

l'm always comin' home again... laughing all the weigh is what I intend

and back to my old self again... and waiting 'n' wanting to make fondyou.

404) THIS WEEK IS National PKD Week!

2010-09-14T13:47:00.005-05:00

September 14, 2010
Tuesday

This is National PKD Awareness Week!
"What's that?" you say? Its the week where we PKD People let the world know more about our disease! Visit the PKD Website now to find out more.

Unfortunately, Austin is NOT having a PKD Walk for the Cure this year, because the interest in our local chapter has fizzled. There is one, however in San Antonio
Saturday, September 25, 201o
Check it out! Donate! Go and Walk!

Later: Liz and I met with Dr. Sankar, a young, curly headed Indian with a quick smile and a completely American voice. He got to the office after we had been waiting for 20 minutes, which allowed me to read two of my student's first papers on their theory of change.

Dr. Sankar rushed in, apologizing for being late by saying he just got out of surgery. He again explained how the lower right parathyroid gland has enlarged and the others are asleep and we'll clip that one out and the others should wake up and start doing their jobs. The operarion takes about 1 and a half hours from start to finish, will be done early in the morning and then I'll "hang out" in the hospital for a few days (maybe up to 4 or 5) while they pump me up with calcium til my sleeping glands take over the job. It is impossible to tell how long that'll take and he wants me in the hospital through that process.

So, all we have to do now is decide WHEN I'll go in. After some discussion about when is best for Liz, best for me, etc., we decided that I'll go in next Tuesday morning at 5 am.

403) NKF Email on "bundling" dialysis services

2010-09-10T09:21:00.003-05:00

September 10, 2010
Friday

I received this email today and want to share with all readers:

Dear NKF Patient and Family Council Members:
By now, many of you have heard about the Centers for Medicare and Medicaid Services (CMS) new rules for payment and delivery of dialysis, which were announced in July, 2010. To help you and your families better understand these new rules, which are often referred to as "bundling" of dialysis services, and how they may affect you, the National Kidney Foundation had developed a "question and answer" resource. This information is available to you on the NKF's "Kidney Drug Coverage" website at: www.kidneydrugcoverage.org/BundlingQnA.html. Please read through it and feel free to discuss with your families, other patients and with your healthcare team at your dialysis center. We will continue to provide you with "patient-friendly" information about this subject as it becomes available.

Casey Greenwood LMSW

Patient Services Director

National Kidney Foundation

30 E. 33rd St.

New York, NY 10016

Ph: 212-889-2210 ext. 144

Fax: 212-689-9261

www.kidney.org

If you or your loved one have chronic kidney disease or are on dialysis, you are not alone. For information and support from other people like you, join the National Kidney Foundation's Patient and Family Council at http://www.kidney.org/patients/pfc/index.cfm

402) Hyper-Parathyroid Consult Results

2010-09-09T22:51:00.014-05:00

September 9, 2010
Thursday

Several evenings ago, Bernadette called to report that both my virus tests were negative, so I do not have Epstein-Barr or the other unnamed virus that are frequent in post transplant folks. Good news, we all agree.

This morning Liz and I went to meet with Dr. Paul Moore to find out the results of his analysis of my hyper-parathyroid tests (click 'hyper-thyroid' for complete info on this disease & see post # 400). His nurse, Nancy, came in and weighed me and got my BP (180 lbs! 140/60 BP). Dr. Moore came in, introduced himself to Liz, and began his review of my testing, giving me the tests results and explaining what they mean. Liz scooted over so she could see to.

First, the results of the blood work on the Lab Report, as follows:
PTH Intact ~ [Normal = 12 - 88]. Mine is 226 pg/mt. <-- "Way too high." Since I am taking synthroid, I should cut back on that... "take one less per week".
TSH ~ [Normal = 0.44 - 4.37]. Mine is "too Low" at 0.11 uIU/ML <-- I have no idea what these numbers and letters mean.
Calcium ~ [Normal = 8.7 - 10.0]. Mine is too high at 11.2 mg/dl.

Dr. Moore explained what these all mean. My left right parathyroid "...is way over producing calcium... sucking it outa my bones..." which has caused the other parathyroid glands to "...go to sleep..." and lay dormant. The over calcium production is not being corrected by my Sensipar.

On the second sheet, the Imaging Report (gamma camera) the lower right side lobe is enlarged... Dr. Moore poked me gently right there to show us where the lobe is. Both this scan and the ultrasound (third page) show that this lobe is enlarged and has "increased persistent activity", meaning it is working too hard.

All of this suggests a surgery to take the overworking lobe out. According to Dr. Moore, taking it out should "... awaken the other lobes to start functioning normally." (<-- I hope). I asked Dr. Moore about what the symptoms of what these tests would be and he replied, "the textbook answer would be this would lead to fatigue, stomach upset, and raised BP". AHA!! I got dem things these days!

So, here is the plan. These reports and Dr. Moore's recommendations sent to Dr. Lewis and Dr. Krienke. We stabilize the parathyroid by lowering the synthroid, Dr. Lewis refers me to one of his group of surgeons he works with, and we schedule surgery. One week after surgery, Dr. Moore wants lab work and wants to see me again.

Lizzie and I left Dr. Moore's and picked up Shayna to go to Rosh Hashanah services. We are happy to have an answer to this ongoing parathyroid issue, and it seems, from Dr. Moore's work that it will be much simpler than it would've been if all the lobes were outa whack! Also, me thinks, it is better than finding out I have Epstein-Barr.

So we end up celebrating the new year at services, and then head over to Cari & Stuart's for our New Year's luncheon. L'shanah tovah everyone!

401) Colonoscopy Consult

2010-09-03T17:16:00.003-05:00

August 31, 2010
Tuesday

Today I met with Dr. Poreddy to discuss need for another colonoscopy. Amy, the nurse informs me that the last time I was there was EXACTLY ONE YEAR AGO TODAY! Weird! That time I was here for "slow emptying stomach" which I remember as "indigestion" and got some prilosec (see Post 379 for details). So we discuss my current situation, tests that Dr. Moore is doing, and my history of colonoscopies with Dr. Hanschen. When Poreddy hears how long it has been since my last colonoscopy, he immediately says, "Oh, you need one now..." and that's the end of this consult.

Dr Poreddy mentioned that he requested Hanschen's records and hasn't received them... so I volunteered to call and see what I can do to get them. Onwards thru the fog!

400) Nuclear Imaging of the Parathyroid Glands

2010-08-28T10:00:00.017-05:00

August 28, 2010
Saturday

So, on the 23rd I went up to NAMC for the parathyroid scans that Dr. Moore needs to complete his consult for Dr. Lewis. And, this is the first time I've had available to post about it. Too busy this last week with trainings and prepping for the fall semester class.

I got there and Robert, the bomb diggity tech escorts me into the first scan, where he asks me to take off my shirt while he and Amy step outa the room and I say "that's okay; I ain't proud...". Well, just then he get called out and Amy just stands there as I de-shirt and gown up. Kinda funny. Then he returns and oils up my neck for a slow ultrasound of that whole area and is simultaneously instructing Amy, an intern from the Austin Community College program in X-ray Technology. She takes notes... I try to keep from swallowing... and we are done in about 15 minutes.

He escorts me on down the hall, where I see Mark, who calls out down the hall something like, "Hey; you're the web page writer guy, aren't you?" and I slowly translate that into "blog guy" and respond with a nod as they roll me into his room. On the way Dr. Lewis passes me and we salute each other. In the next room, Mark and I catch up (see # 338 & 383) and talk about my ongoing healing kidney and the other attendant things that keep popping up, like the current hyper-para-thyroid business.

Mark sets me up to receive a radioactive isotope (I think it is Tc99m-sestamibi) and then he injects it and I wait awhile til they can set me up in the imaging scanner, a gamma camera.

"By using a gamma camera in nuclear medicine, the radiologist is able to determine if one of the four parathyroid glands is hyper-functioning, if that is the cause of the hyperpara-thyroidism. Theoretically, the hyper-functioning parathyroid gland will take up more of the Tc99m-sestamibi, and will show up 'brighter' than the other normal parathyroid glands on the gamma camera pictures..."* This process is one of those where I lay back on a curved pad and a huge machine encloses a simultaneously moving imager that comes curving up from the right... right over my face and neck, at a height of about 2 to 3 inches. Mark asks me to stay still (but I can swallow when I feel like it) for the next 12 minutes that it takes to take the pictures it needs. I lay there. They have music playing... not my choice exactly. I lay there.

After 12 minutes the machines swing back and I get up, helped by Mark. I am done... for 2 hours. This is the finish of the pre-picture. In two hours I come back for the images of my neck with the isotope fully taken up in my parathyroid.

I had planned to hang out at NAMC, finish up the nuclear imaging, and then go over to the Transplant clinic for my meeting with Dr. Lewis. I'm itchy to DO something besides read so I head out to find a place to sit... so, on the way down the hall I decide to shoot down Mo Pac to my office and see what's going on...

Back at NAMC:
Back up to the X-ray waiting room, where Mark comes to find me just about on time. We return to the imaging room and I complete the next 12 minute stint in the gamma camera. Mark and I say our see ya's and I move on down the hall to the front of the hospital where I now have to be re-registered by a nice young woman who is doing her first registration. I think she does a great job and tell her so. Then it's down the hall again to the Transplant Clinic.

Walk in and expect to have to wait... and they surprise me with a room waiting. Maxine weighs me (176! that's UP some) takes my BP (130/72) and asks all the pre-doc questions. Yes I have been unusually tired lately... have had a few headaches... some bad indigestion twice or so... and nothing else to complain about. Then Lizzie shows up.

Dr. Lewis enters and says all the blood work is good and I continue to do great, based on what he can see. We talk about indigestion and he ponders that somewhat and decides he wants me to get another colonoscopy with Dr. Poreddy, who did my endoscopy years ago. I wonder if all the colonoscopies that Dr. Hanschen did can be used and Lewis says they were too long ago. He also wants me tested for 2 other viruses that might be involved so I go in for more blood work next Monday (later I find out that one test is for Epstein-Barr virus).

So, anyway, now I am scheduled for another consult with Poreddy pre-scheduling another colonoscopy and have another appointment, with its attendant lab work, with Dr. Lewis set for September 13th. The call back from Dr. Moore is still to come.

I am not too worried at this point. And, I am realizing there will be some more posts to come to the readers on this blog.

Notes:
* "Hyperparathyroidism" retrieved August 28 from Wikipedia, online at http://en.wikipedia.org/wiki/Hyperparathyroidism

399) Hyperparathyroidism Çonsult

2010-07-31T11:19:00.014-05:00

July 29, 2010
Thursday

Last time I saw Dr. Lewis, he was perplexed about the situation with my continued high calcium, so he referred me to Dr. Paul Moore, an endrocinologist. Well, after one missed appointment where the doc was at the north office and they scheduled me at the south office, we finally met for a consult today.

Dr. Moore and I discussed my medications, health history (including the early thymus treatments and the HHT) and he called around for the latest lab work that Lewis' office was supposed to send. Even though others have explained to me many times, Dr. Moore reviewed the problem: hyperparathroidism. I took notes this time, since this is now an "official" diagnosis we are adding to my collection. 1) Sensipar increases the sensitivity of the parathyroid gland to calcium levels in the body, decreasing the level of parathyroid hormone, calcium, in phosphorous. 2) After transplant, sometimes the parathyroid glands continue to increase the calcium... like they are stuck in high gear, and the Sensipar is continued to control the level of calcium so it doesn't go too high. These levels have to be controlled either medicinally or through surgery (hence my appt. with Moore to help decide which is the best course for ME). One bad thing about surgery in my case is he doesn't know which nodule of the parathyroid is the one to zap and taking out the whole works can, in his words, lead to "messy" results. 3) So, Dr. Moore wants to a) check my blood work; b) set me up for an ultra sound and another scan to see is any of the nodules are "hot", and c) meet again to make a plan.

It has been some time since I have posted up here... and yet, I do want to keep folks updated on my ups and downs post transplant. Don't know yet whether this upcoming work on my hyperthyroidism is gonna be an up or a down. Stay tuned and we'll find out together.

398) Mordechai's Birthday

2010-03-13T15:40:00.010-06:00

March 12, 2010
Saturday

Home: Kick Kats won their second game of the season against the Starlettes... 3-2... Shayna played midfield mostly and played well in this

hard- fought game. I missed blogging on Mordechai's birthday last Tuesday and also World Kidney Day on Wednesday.

At the birthday party we had Grace, Lawrence, Kim, David and little Emma over for stir fry and a

kidney-shaped German chocolate cake... great fun.

On World Kidney Day I FB'd a link and toasted readers with a long drink of cool clear water.

Today I welcome friend and past student Donna to the blogosphere. She is writing her experiences as she begins her Peace Corps stint in Puerto Rico. Check her out at Donna's Peace Corps Adventures.

397) Annual Dr. Visit & Physical

2010-03-03T07:01:00.008-06:00

March 2, 2010
Tuesday

NAMC: Liz and I went for my 'annual' physical and 3 month kidney checkup. For the first time we are visiting up here at 10:15 am... they have changed their schedules around and from now on we'll be meeting mid-day Tuesday's instead of late afternoon Wednesdays.

My pre-doc shows I have low temp, 130/70 BP, and weigh 180! I have got to quit eating so much pizza... and exercise some. The doc and Bernadette get to me at the same time, so Bernadette bows out and Dr. Lewis checks me over and discusses the current situation, based on my labs and reports. He reports that my blood count is good, creatine is 1.1, no more blood in the urine, and my levels of myfortic and the neorals are good. However, my calcium is high so I need to double my sensipar for now to see if that works. He concludes that "you couldn't tell you have ever been sick".

I bring up my concerns with my drippy hose and its urgency to turn on when it has to, and he discusses my three option: 1) get a test and then start Flomax; 2) start Flomax without the test to see if it makes a difference; or, 3) have an exploratory operation. I choose #2, and he writes me a prescription and we will meet in two months to check if that is working. If so, we're in good shape. If not, we go on to explore the other options.

Bernadette comes in in her new glasses and we chat about the changes in meds, etc. So, we are all done again and ready to move into year number two living with Mordechai the Miracle Kidney! Stay tuned for a birthday party for Mordechai... coming up on March 9th!

396) PKD in the Neighborhood

2010-02-27T10:33:00.003-06:00

February 27, 2010
Saturday

Last Wednesday: My friend Kim was listed on the board as "out" for a funeral. Now I have historically been shy of funerals... avoiding them at all costs during the years of living life on the edge. Only went to very close friends' funerals (Willie C. and Mike C.) and then my mom's... but that's about it. Then in my fifties it seemed like I was over that personal quirk and began realizing it was not about me but about MY honoring the departed and I needed to bite the bullet and go and respect the departed.

At any rate, that day Kim was out for a funeral and when I finally touched base with her later in the afternoon, she reported that he up hill neighbor had died after "years of being frail" and going for weekly "treatments" for years. At the funeral she learned from another neighbor that the woman (68) died from complications following years of PKD. Kim wondered why she hadn't gotten a transplant, like I did. I shared that there are a lot of reasons for folks not to be candidates for transplant and it would be impossible to guess what the deal was with her neighbor. Kim was surprised that right there next door was PKD, just like mine.

So, PKD is around every corner it seems, as the most common, life threatening genetic disease impacting more that 600,000 Americans.

395) Do Transplant Hearts carry memories?

2010-02-24T07:47:00.004-06:00

February 14, 2010
Saturday

Morning News: Picked up from the internet this morning... and thought provoking... wonder if this goes for kidneys too?

"Is part of an organ donor’s personality also transferred to the recipient in a transplant? Yes, contends Pearsall in his book The Heart’s Code, which provides other remarkable examples of transplanted hearts with memories." No mention of kidneys or any other organs aside from the heart in this article report on a book by Paul Pearsall.

394) Notice from Nephr-online

2010-02-11T15:56:00.006-06:00

February 11, 2010
Saturday

News Flash: Urgent need for 4-wheelers and their toys in DC! "The blizzard has finally ended in the D.C. metro region, but the need for drivers has not. The National Kidney Foundation has put out urgent calls to four-wheel drivers that can help the 6,000 stranded dialysis patients who can't get to their weekly appointments. Missing just one of these appointments can be fatal.

If you live in the D.C. metro area, have a four-wheel drive vehicle, and would like to help, send your contact information and availability through Saturday to:"

DaVita Dialysis
brian.nelson@davita.com

Fresenius Medical Care
anita.otto@fmc-na.com

393) Message for New Readers

2010-01-30T16:09:00.031-06:00

January 30, 2010
Saturday

New Readers:
This blog is now so long now that few people have the where-with-all to read it through from beginning to end. However, there are some parts that are of interest to most people, so it is possible to find what you want either by looking in the several indexes, or by looking for the big events, as listed below.

For new blog readers; when you click on a month from the listing of months to the black side bar, please note that you will come in at the LAST post of the month. You page down to return to the beginning of each month. It is the same with Post #'s: page down to find earlier numbers. For your ease, however, the posts listed below are links that'll take you to the specific month.

Starting with the oldest first here are some items you may wish to review, by month:

April, 2006 --> My First Time ... and page down to post # 1
August, 2006 --> Welcome New Readers ...#47
February, 2007 --> The Hundredth Post ... and page down to # 100
September, 2007 --> Washington Advocacy Trip ... and page down to # 165 (thru 168)
January, 2008 --> INDEX ... and page down to # 207
July, 2008 --> Dialysis @ Kerrville Folk Festival ... and page down to # 251-252
March, 2009 --> My Transplant ... and page down to # 337
September, 2009 --> 6 Month Post Transplant Check Up ... and page down to post 379

Also, you can search the blog for any particular word or name by using the "Find" function on your toolbar. When you click on Find, a new toolbar appears at the bottom of the page. Type in your name or word and click "Next" and you will search the particular month you are viewing. If the word or name is NOT used in that month you must select another month and again click "Next".

Happy Reading!

392) US Renal Community Helps in Haiti

2010-01-19T17:19:00.004-06:00

January 19, 2010
Tuesday

Remember Disaster Assistance?
See what the renal community is doing to help the dialysis patients in Haiti. Very cool!

391) News to Me

2010-01-11T15:22:00.007-06:00

January 11, 2010
Thursday

AWAK --> presents the (personal) 'Space' Odessey of 2010.
Read all about it at http://nephronline.com/article.asp?IndexID=301

this smallish utility belt-like packet is a dialysis machine that provides 24/7 dialysis as the wearer goes thru their day!

390) Twenty Ten's First Post ~ Good Labs!

2010-01-09T13:17:00.006-06:00

January 7, 2010

Thursday

Home: Bernadette called tonight to say my labs from Tuesday "were perfect" and I can "go down to one myfortic in the morning" because the level is too high. This is a good thing. Nice way to start my tenth month post transplant, me thinks!

We wish a good, healthy new year for all our kidney kontacts out there: the folks on dialysis; transplantees, and those still worried-sick about their kidney konditions.

We give thanks to all the medical people who make their lives supporting us kidney patients: the docs, nurses, techs, dieticians, phlebotomists, social workers, and lab folks we have to work with...

...and especially in my own world:
Peggy the Lab Tech, Dr. Lewis, Bernadette, and Maxine the LVN.

And, sometime soon in this new year I have to get over to El Milagro to say a special H-N-Y to all those folks over there too.

389) Our 2009 Holiday Card

2009-12-25T08:51:00.011-06:00

Friends ~ this has indeed been a big year for us, including:
~ Jack's successful kidney transplant in March
~ John's graduation with a BS in Biology in May
~ Katie's September return to Texas State with a new major: Interior Design
~ Shayna's Bat Mitzvah in November, ...and
~ Liz's love, support, and organizing skill through all our challenges & celebrations!

We wish for you health & happiness in the New Year! J~L~J~K~S
[pics from the Bat Mitzvah]

388) A Trip to the Emergecy Room

2009-12-20T14:51:00.018-06:00

December 20, 2009

Sunday

Home: Every day I am more out of the fog of a "simple virus" that started with a sore throat last Thursday, the 17th, like a train pulling out of the station on a track that was not only heading to the wrong destination, but also through an alternate universe not dissimilar to chugging through Dr. Parnassus' mirror. Actually, if I had had more time in delirious states, it would have been like the excitement Dr. Parnssus imaginary world offers with its surreal obstacles. Mine were only comparable in my own mind, which is STILL not in its right station...

And, as I have promised to everyone, I will arrive on time in the RIGHT station and ready for the next two day's normal agenda... driving out to Columbus Texas with my sweetie to do two Trainings for CCYFS while Liz shops the little town, and we stay in a B&B.

Thursday afternoon, I was at the office, finished preparing for Columbus, and planning for Friday's Office Party, where my responsibilities included 1) making chicken enchiladas for 8 staff, 2) finding a final gift to give as a "Secret Santa", 3) considering which book to pull outa my stacks for gifting in our Books White Elephant. OH, and also, for my busy evening, buying some last minute Hanukkah things for Liz's family, and wrapping ALL my gifts for Friday night.

Liz was at the University wrapping up her work before two weeks of vacation, and then making her final plans for our last day Hanukkah festivities, also Friday at sundown at our house... plans which included buying and wrapping the last of the family presents, shopping & cooking the traditional latkes brisket for 12 of us, and straightening house... you get the point. That was our "normal" time schedule for our Austin Nowicki Hanukkah Train for the next 24 hours or so.

So, I am there in the Thursday afternoon, talking to my colleague Kim, mentioning that my throat is really sore. She shares, "Oh yeah... that's what everyone had... first it'll be the throat, then the drainage that won't stop, then the...."

"STOP! That's NOT gonna happen! Don't even describe it to me... you know how suggestible I am! Just keep that to yourself. I'm gonna be fine..."

"Right. I hope so... and don't think you're coming in here Sunday to prepare for Columbus..."

"I'm ready now" I responded... and we went on to compare presents, think about the party, etc.

When I got home I decided to take a little nap and begin the pre-cooking of the enchiladas after Survivor. I started boiling the chicken... and that train pulled thru Parnassus' mirror, outa the station and into an alternate reality... while I lay on the couch, napping in and out of the rest of the evening. Liz was worried, and I kept saying, "I just need some sleep..." at 9 o'clock, 10, and sometime after midnight. Around that time my "plan" was to sleep... get up at 5 a.m. and cook enchiladas while figuring out how to do the rest.

At 5 am Liz wakes me and says I am HOT... and takes my temperature... no big deal... it's only 100.2, here's some Tylenol. "I need to sleep a little bit more..." I say, only just barely recognizing I am completely out onto a new track that is not headed where I think I am going.

At 8 she wakes me up for my meds and we call Bernadette and leave a message. She calls back and, like the Swiss Conductor, punches my ticket and tells me about my next stop.
"You need to go up to the Emergency Room at NAMC and get checked out completely!"

"Really? I have things to do...." and she interjects, "...like go to the Emergency Room. Do you want to make sure your kidney is okay? <-- actually, I was off into a moment of rationality, imagining striking the items off my list. As I draw an imaginary line thru each item, the motion leads to an image of the people impacted and my hallucinations of how I am "failing" them. Wait, that voice yelling "failing" is my mom's.Then I realize Bernadette is my Dr Parnassus and she IS imagining my reality!

I call Kim and share that I will BUY and send over enchiladas ("don't worry about it); that I am at the Emergency Room (well, don't they already know it is the flu? <-- everything is the "flu" to Kim); (Should I cancel Monday? I respond, I'll be fine by Monday, I'm sure).

I am soon to step onto the landing at the Emergency Room of NAMC! I even have my cell phone with me!

So, Lizzie hauls me out there. I am feeling 22% better, after the Tylenol, and my fever is down ... and am fairly quickly brought into a room to await Dr. Milner. Is he Parnassus / Bernadette too? Liz waits for the beginning to begin before going down to the university to finish her pre-holiday work. BTW... her train is on the wrong track too. It is 9:30 am.

We get outa the waiting room and into a treatment room fairly quickly... Bernadette has called ahead with a "reservation". The nurses, head nurse Chris, and Doctor Milner are friendly... and get right to the job of taking blood for testing. Liz leaves for the university and I read my new book, Isiguro's An Artist of the Floating World... recommended to me by Johnny.

Sometime later Dr. Milner returns and reports on my blood work: no flu, no strep, creatinin is fine. I am ony a bit dehydrated so he offers me a pint drip. That takes another several hours and we finally get out of there at around 4:30 pm.

I still feel miserable with sore throat and body aches so Lizzie takes me home and puts me to couch for a rest. I sleep on and off... mostly on... through Friday, miss the family Hanukkah, which has been moved over to Jen's house from our house. And on Saturday I get up in the morning feeling fine for an hour or two... and then it is out on the couch for most of the day til I have to get up to wrap presents for our own Hanukkah with the kids. We make green enchiladas and have a pretty good time with the kids around, sharing our gifts and catching up with everyone's lives.

Sunday I get up and feel fine for even more hours.

December 21, 2009
Monday

By the time Monday rolls around I am back to 95% and Lizzie and I head out to Columbus for me to do a training gig at CCYFS and us to stay at a B&B for a "romantic getaway". Liz drops me off for my afternoon training and goes shopping and then we head over to the Little Red House (servant's quarters for the Magnolia Oaks B&B). This place was really a comfy little cottage that we had all to ourselves and we got to meet and chat with John and Nancy (the owners) before we headed back to Austin on Tuesday afternoon.

387) December Doctor's Visit

2009-12-02T17:01:00.006-06:00

December 2, 2009

Wednesday

NAMC: In for my 8 month check up with Dr. Lewis. My vitals were healthy (BP 126/60), and I answered all the nurse questions to indicate that I am healthy, etc. I was happy to see Bernadette, back from her vacation.

Dr. Lewis looked over my labs, asked questions and commented that all continues to be good and that there is a miniscule amount of blood in my urine... taking us off onto a discussion of the blood in my urine throughtout my life, bed rest and home schooling during my second grade year at Topath Elementary School in Avon, Connecticut, and my complete records being destroyed in the US Army Medical Records building fire of 1957 or therabouts... in St. Louis...

So, he wants more regular blood work, ending up in a 24-hour collection and next appointment in February.2010.

386) News for Transplant People

2009-11-24T23:22:00.003-06:00

November 24, 2009
Tuesday

Reading the NephrOnline today and found an article about quality of life for transplant people over time. The authors report that usually transplant get more medical attention and support the first year after surgery and less as time goes on. I think we all know that. The interesting point, however, is that as people get less from the medical support system, they have more hospitalizations and the group representing one year post surgery had generally a better outlook about their future than did the group representing 3 years post surgery. "The side effects of immunosuppressive medication had statistically significant effects on selected psychosocial variables, such as how they judged their health, what they felt they could achieve, how well they coped and their health-related quality of life."

The authors suggest that continued medical support should continue more regularly for more time post surgery than currently. "They also need to provide patients with advice on post-transplant care, immunosuppressive medication and self-care skills, together with initiatives that enhance their positive appraisal of their health, their belief in what they can achieve and their ability to cope effectively."

This research makes sense, and I myself find that I am getting lax on my self care as I meet less with my post-transplant team. It seems like the desire to return to a "normal" life post transplant, at least in my case, has an impact on keeping to the strict timing of taking my meds and no matter how I try to keep the timing a priority, it easily slips into the background, especially when there is a busy social or work schedule, like going to a sporting event and realizing once I am there that I'll still be there when my medication time happens.

I think that as the post transplant team sees me less often, I also pay close attention to my situation less strictly.

385) HAVE A SAY --- TODAY!

2009-11-11T14:33:00.004-06:00

November 11, 2009
Wednesday

From the PKD Advocacy Network:
I took time out today to put in my two cents... and you can too...

Immunosuppressive drug coverage must be extended

E-mail your Senators today

Congress is on the verge of reforming our nation's health care system, and now is the time to take action. As you know, maintaining lifetime immunosuppressive drug coverage is one of the biggest challenges kidney transplant recipients face. We can't miss an opportunity to ensure Congress addresses this issue.

Take a moment to send your Senators an e-mail asking them to include the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 565) in whichever health care reform legislation Congress may approve.

Immunosuppressive drugs are vital for surviving a kidney transplant. Under current Medicare law, coverage of immunosuppressive drugs are only guaranteed for 36 months after transplantation. S. 565 will end this 36 month limit.

Kidney transplant patients need vital immunosuppressive drugs for the rest of their lives. Currently, Medicare only covers the cost of these drugs for 36 months. The annual cost of these drugs is $15,000 to $20,000, which is far less than the cost of dialysis ($50,000 to $75,000 per patient, per year) or the cost of a second transplant ($100,000 to $125,000 per transplant).

384) November Report

2009-11-07T12:29:00.008-06:00

November 7, 2009
Saturday

Home: I had a participant in a training yesterday who started a conversation during a break by saying, "Do you mind if I ask a personal question?". Of course, I seldom mind and my own mind calculated quickly that it had been some time since someone has asked about my kidney, dialysis, or any of those topics that used to come up frequently. "No... I don't mind" I replied.

She continued, asking, "Are you on dialysis?" and I countered, "Not anymore...." to no response but a blank face... so I continued, "I got a kidney in March, so I haven't been on since then". That explanation data entered for her and so she began to ask about dialysis, dialysis centers, and other details of the dialysis experience, explaining that her 38 year old daughter has just had her "kidneys collapse" and has ended up in dialysis. She continued that the daughter has had complications from some exotic genetic disease that docs don't usually know about, so she was treated primarily for being HIV positive and so on and so on..."developing chronic hypertension" and numerous other listed medical conditions. I replied something like, "so, the hypertension impacted her kidney function..." which supported her continuance of ventilating the story. I am thinking all this time that it is sad that people search out others they imagine have some sense of understanding of their crisis and then they open up like a dam long bursting with water's weighty energy when stopped up. Aside from the daughter's debilitating disease and her current needs for medical intervention, and my training participant's consternation about the medical care she is receiving, the nephrologist's lack of building rapport with the patient's mother, and such, it is clear that the woman in front of me wanted some "advice" without really ever coming to an answerable question.

I offerred that it is important for such medically involved dialysis patients to feel a sense of connection with the others and the staff in their dialysis center. They can get excellent information, sounding boards, and patient-to-patient support from other patients and staff in the dialysis center if the dialysis center is an open, collegial-type of facility where patients are encouraged to build supportive relationships, and staff are friendly and encouraging. Based on the woman's response, the center where the daughter is, is not like that at all and the patients are all separated by hospital privacy screens and staff are very business-like. I suggested she google davita and look at their information about finding a good facility, saying that I am not necessarily recommending Davita facilities... but they have a useful website.

Around this time the break was over and all the other participants re-entered for the training and I was left bringing other thoughts to the fore and gently setting this concern and consideration of these kinds of conversations to the rear. I do, however, think it is curious how people search out people they think are in similar situations to begin very intimate discussions with, without knowing really anything more than their hallucintation of the similarity between them and the person they are inquiring with.

Next Tuesday (November 10) Mordechi the Miracle Kidney will be 8 months old... 8 months post transplant and all still continues to go well!

News: I was going to follow up with Dr. Leary about the telangectasia in my gum and had an appointment that I went to and still missed. His office has moved and I couldn't find the new office. I did find out that he CAN zap that spot in my mouth. Still need to get that done sometime. Then onto my dentist to get needed teeth work I've been putting off while I got further into the healing and acceptance of Mordechi.

NOTE: Of recent past I find myself doing much more family sharing with friends on FaceBook and less of the personal reporting here on the blog. For friends from afar who are used to finding details and thoughts about those non-kidney related personal items that used to reside here on this blog, they can now find me on FaceBook.

383) My Cardiac Testing Adventure

2009-10-24T15:02:00.006-05:00

October 21, 2009
Wednesday

NAMC: After my last Clinic meeting, Bernadette said she'd schedule me for the remainder of my Cardiac testing for up there at NAMC so we could get me in and out without having to find a Cardiologist to get involved... in other words, they'd do the stress test and then pull in a cardiologist who is on the floor to monitor it. So, she scheduled it for the 20th. Well, turns out I am in El Paso that day and when I figured that out and called Bernadette, she replied a little cooly, "Why don't YOU schedule it so you can work out a workable date for it?" and of course, I agreed. So, then I scheduled it for the next day (that would be today) at 7:00 am.

So, I get checked in and guided to the waiting room, and then taken to the exam room, where my old buddy, Mark, and I re-connect (see Post # 338) and he tells the nurse, Cindy (?) describes the nuclear cardiac testing they will do and I nod knowingly throughout, although I am listening for "exercise" and that never comes up.

They give me isotopes to drink (yum) and put me on the long board of a CAT scan (or some similar machine) that takes pictures of my heart thumping for 18 minutes as the tracer thingy goes with my blood thru my heart. Then I am out of that and ready for the doctor watching part.

Turns out the cardiac testing I am doing is where a medicine is put into me thru the IV that will stress my heart chemically rather than me doing is myself, muscularly. So, that's where the doc comes in to watch. He is nice and a good watcher, as he leans back against the cabinet, talking with me and the techs. Takes about 2 to 3 minutes and I feel like there is an invisible linebacker sitting on my chest briefly. I get a headache too, as a secondary effect. Then that part is done.

Then they send me to the cafeteria for a taco and after an hour I return and they take pictures of my heart again for 18 minutes. Then we all congratulate each other and the whole thing is done.

However I am supposed to do a training this afternoon, and as serendipity would have it, I get the time wrong, they can't do it this afternoon, and I just get to go home and take a nap... which lasts till after the sun has set. So, there ya go. Another calendar box "X"ed off.

If you have to go for one of these nuclear cardiac stress tests, it really isn't so bad, in my experience. And Mark and Cindy are happy to be mentioned up here in the blogisphere.

382) October Clinic Visit

2009-10-15T08:49:00.004-05:00

October 14, 2009
Wednesday

NAMC: I am here for my clinic visit. Bernadette does my initial evaluation 20 questions and all are answered positively... and I tell her about having a telangectasia in my gum. BP is good and the doctor gives me my lab results. He remarks that I am more than 6 months post transplant and based on my blood work you couldn't tell I had even had a transplant. He adds that the preliminary cardiac workup he has looks normal too. Liz and I are happy about all this news. I tell him about my telangectasia and he recommends I call Dr. Leary to discuss it and find out who he thinks I should see as a dental surgeon.

We talk about finishing up my Norvasc prescription and then start the new BP meds he wants me to take to cut down my water retention. Other than that, no changes in my current meds, but he does recommend I start some sort of exercise regimen. We set an appointment for early December and we are done and on our way.

I feel very good about how this whole thing is progressing.
Plan to contact David the Social Worker about contacting the donor family.
All the blessings already are.

381) Sycamore Creek Concerts Reunites Old Friends

2009-10-11T13:08:00.015-05:00

October 11, 2009
Sunday

Home: Wow... it's been almost a month since I've posted here. Things are jumping and there hasn't been any major kidney news lately.

Today, I am posting after seeing several OLD friends last night at Thomas & Gail's house concert, featuring Terri Hendrix and Lloyd Maines. All the usuals were there, plus several folks I haven't seen in ages: Judy and Bill; Linda; and Rick and Lynn. Actually... haven't seen Linda, Rick or Lynn since before I even knew I had PKD... like 10 years or so. So, I felt it timely to say a few things here today for those who don't follow this blog routinely.

1) April - August 2006: My beginnings of adjusting to dialysis can be read and enjoyed.
2) September 2006 - April 2007: My first year on dialysis is completed.
3) February 2007: The 100th post!
4) January 2008: Blog INDEX at Post #207 that tracks import topics to date.
5) July 2008: KFF Baldauf Family Reunion at Post #251-252.
6) March 2009: From one more dialysis post (Post 336) to "We got a kidney!!" Post 337
7) August 2009: 6 months post transplant clinic visit! @ Post 379.

More to come on October 14th... next clinic visit. Namaste.

380) PDK WALK FOR THE CURE

2009-09-12T13:30:00.027-05:00

September 12, 2009
Saturday

Abiding Love Lutheran Church: The Austin Chapter of the PKD Foundation met last night to set up for today's walk, amidst drenching rains... deciding to put the walk signs and such out this morning. This morning we all met at 7 and decided to cancel the walking part, since many parts of our path were under water... to cancel the sumo wrestling and the jumping castle... and to stay indoors for the festivities and speechifying and such. Walk leaders, Candace, Randy, Kim, Dan, Butch and others kept their spirits up even though the walk was a wash... and we all made the best of the lousy weather, visiting, thanking folks who came anyway, explaining PKD, and remembering and honoring those family members lost to PKD. I got to wear the big kidney (pics to come later). Shayna and her team did a good job of participating in the "walk" (actually walking the route and returning soaked to the bone), and helping with the setup and take down. Some of the pics I took are shown here. A number of the "teams" that have made their own team shirts, supporting family members with PKD came, as usual in their matching t-shirts.
Cheryl who comments on this blog often came to visit with us and to see the info about PKD.
Today the "cemetery' was a wall installation with the names people lost to PKD (see # 378).
Two of the family teams t-shirts.

The Jonas Alvarez Band.

Even tho we were inside, looks like all had a good time. By the way, you can still donate to Shayna's Team Tikkun Olam til the end of October!

379) 6 Month Checkup with Dr. Lewis

2009-09-04T10:24:00.024-05:00

September 2, 2009
Wednesday

NAMC: "This kidney is a monster!" Dr. Lewis says. He is standing over near the door in his sea green scrubs, studying my record's updates and then he turns and smiles and begins asking some of his usual questions: "How're ya feeling? Any nausea... diarrhea..." and such.

We have been here for awhile, with Maxine making small talk and taking my BP (125/68), temp, weight (184! --> I just ate lunch 30 minutes ago), etc. and she has left us to catch up before Doc comes in for my exam. My creatinine is 1.1, BTW.

Dr. Lewis asks questions and gives info: 1) my triglycerides are up and we discuss my self watching salt ("I'm eating less salt from chips, etc. but pistachio's and cheese may be the culprit...") so he asks that I continue to "watch" my salt intake and he decides to refer me for cardiac testing "... to be sure we protect my great health and that (monster) kidney..." he installed. And, 2) what about my swelling feet? ("That Dr. Poreddy says it is from the Norvasc and I should be on anther BP medicine... and I still think it is worse in the higher temperatures and better when it cools off...blah blah...")

Ah yes, Dr. Poreddy --> I must regress, stepping back thru time to August 10th... a Monday... bright and early... when I went to S. Austin Hospital to get a Stomach Emptying Test and a barium swallow.

The SET wasn't much to talk about. It is also called a gastic emptying test. They gave me a cup of oatmeal with an isotope in it and I ate it and waited awhile before laying on a long table with a moving x-ray machine that tracked the food as it digested and emptied out of the stomach... lasting about an hour. Pretty boring really.

Then I went to another room where they mixed up some Barium swallow potion and had several little cups with different consistencies of the potion. We waited until the doctor... a "Austin-type" guy about my age, with a plaid shirt ruddy complexion... looking like a hiker... came in and joked with me a bit and had me drink one of the potions while he and I watched this black blob flow thru my skeletal head, down the pipe running fairly parallel to my spinal column, through the body, kinda like one of those TV commercials of the innards of your drain with draino flowing through it. It was fascinating... and fortunately he had to do this three or four times and I got to watch each time. My skeletal head would go back, all white in the surface and greyish around the edges... my jaw opening and the ghostly larynex. It was similar to this pic, yet we got to see all the way down to my stomach. It was slurp, swallow, slide, black blop slipping down like the coloured oil in your lava lamp falling back down as it cools... until it settles into the stomach. This doc concluded there is no problem with my swallowng, and that made me happy.

So, by the date of my Poreddy appointment, he introduces himself and leans intently towards me looking directly into the depth of my eyes... as,if he is searching for something in there, or maybe he is just using his rapport-building skills and I am wondering if folks from India have a different idea of personal space (they do) and it seems as it he is leaning in almost too far, but I don't back up cause I'm curious how close he'll come before stopping. Anyway, he reports to me matter-of-factly: 1) I have "slow stomach emptying". I wait to hear more. There is no more. I coulda asked, "Can you tell me more?" and yet I just sat there staring into his eyes as he was staring into my eyes, thinking maybe I could get a reading on what this slow emptying was about.... when he finally continued, "you can take Prilosec and I'll give you a prescription, but don't fill it until you talk to Dr. Lewis. You are on a very complex regimen of medications, and he should see how this one will fit with the rest. If you can't take it for some reason, we'll do a endoscopy... have you ever had one of those before?"

"Well, yes, I have had one some years ago, when I had a very low blood count. Don't recall the date or the doc... but Dr. Moritz got the results and I thought it had to do with my HHT. Do you know what HHT is..." he nods and jumps up, saying let me get the report and walks out of the exam room. I'm thinking, "this should be good. I've never seen any doc be able to get an old report any time soon...." and I pull out my new book and start reading (Kurt Anderson's Reset). Poreddy pops back in within a minute or so, with a warm, stapled report of my gastrointestinal endoscopy from 2006. I am amazed and have new respect from this guy. He looks it over, and says, "Yes, they did find some little red spots in your stomach..." and I again am waiting for more.... not to come. He concludes, "Well, get some prilosec and fill this unless Dr. Lewis says not to..." And for some reason, I don't ask for clarification, or what he thinks, or anything. I thanked him, got up and left, just like that. How unusual of me. Maybe he had me hypnotized or something. I pondered this strange doctor's visit for all the drive back to work.

And now, back onto the forward escalator... stepping /gliding up and up... back to the Septermber 2 Floor: hosiery, kidney checks, Dr. Lewis, Bernadette coming up. I tell Dr. Lewis about my visit to Dr. Poreddy and we try to find the now lost prescription for the forgotten name med for my slowly emptying stomach... can't find it anywhere, yet we showed it to Maxine just 20 minutes ago... maybe she has it? Dr. Lewis calls for her and she says she returned it to us (not me...) and time stops for a sec... and then she says the name of the medication! We get back into time and she leaves behind a closing door, Dr. Lewis thinks and speaks: "Don't fill it. Too many drugs isn't good... and I'm taking you off two (valcyte & dapsone: the infection beaters) myself... take some prilosec if you want..." and I am delighted to drop two and not have to add another.

What about the Killer Swine Flu, I inquire, and his answer goes something like this: "You can get the vacine when it comes out."
Me: "Can I get it here? Are you guys gonna get us in a.s.a.p. so we are protected cause of our immunosuppresency?"
Lewis: "Get it if you want. I've been doing this (transplants, I suppose) for many many years and I don't get too worried about it. Transplanted people get the flu just like everyone else and we don't see a lot of them do poorly." Shrug. Okay. I think, well; I'll get one and maybe not worry so much about the whole thing. I do trust Lewis.

<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
September 4, 2009
Friday

Home: On September 10 it'll be 6 months post transplant! WOW. It has gone by fast. It has gone by slow. Mostly I am aware that I have been off dialysis for 1/2 year. That is a blessing. I have a "monster" 25 year old kidney cleaning all my toxic wastes and functioning beautifully... I have the awareness that each and every day is to be lived completely and fully in the present! I can be as happy as I can be and be as down as I can be and enjoy all my states for how they define this life we all live. Namaste.

I wonder when Mordechi the Miracle Kidney will turn 26. Now I can find out, because I believe at 6 months I am allowed to contact the family that donated their son or daughter's kidney to ME. WOW again. I think of Insoo's face and voice saying her "WOW" how did you manage that?"

So, one question now is, do I want to find out more about the person who left their 25 year old kidney, whom I have named Mordechi? For many months I thought excitedly about contacting that family to somehow inform them that the donation of their progeny's organ has saved a person such as me... is this about me or them? I'm thinking (hallucinating) there must be some sense that their loss of a child (which many consider the greatest loss) cannot even be dented by the story of someone who bought a few years based on their loss. Can I be happy or even somehow relieved by the thought of my child's organ living on in a stranger? Am I as blessed and happy about their loss and they are healed by the gift of life they have given?

In the realm of the "compassion" that Jack Kornfied writes about in A Path with Heart, we all are part of the great compassion and can realize that all pain is our pain and all healing is also our healing... do these folks I do not know see the world in these ways? And, do I want to find out it they even want to hear from me? I am not sure. I think I will discuss with my transplant social worker, David.

This is my first Friday off, since TNOYS in now closed on Fridays while we cut back expenses and try to get our financial feet back on the ground. We lost some staff, and all the rest of us are working less time until we get some money gigs going. It is weird, but nice, in a way. I'll use the time for chores, preparing for my UT class... again teaching SFBT as a 2nd year graduate course in the School of Social Work.

Life is Good. All the blessings already are.

378) Team Tikkun Olam

2009-08-16T19:39:00.007-05:00

August 24, 2009 ~ Shayna's page name = http://www.pkdcure.org/shaynatikkunolam

August 16, 2009
Sunday

Home: The beginnings of Shayna's Team Tikkun Olam are installed on Austin's PKD Walk for the Cure website. She and I finished putting them up and then she was off to Hebrew and her Rabbi meeting. In Hebrew, Tikkum Olam means "helping to prefect the world" and it is part of Shayna's work towards her Bat Mitzvah, later this fall; her service project as she learns to be part of her community, and part of the reason Liz and I attended the Austin PKD Chapter meeting yesterday.

Austin's Chapter Walk Website

377) At a PKD Austin Chapter Meeting

2009-08-16T07:20:00.014-05:00

August 15, 2009
Saturday

Austin Chapter PKD Foundation Meeting: Liz and I attended the August meeting today to be part of the planning for the September PKD Walk, which Shayna has taken on as her community project for her Bat Mitzvah community project. Shayna was on her way back from the coast so we represented her and volunteered her for working with working with the younger kids attending the walk with their parents. Liz has attended these chapter meetings in the past, and I am embarrassed to say that this was my first actual meeting, although I have participated in a number of the walks, raised money, and blogged about them for several years [Posts # 282, 164, & 55]. This year's walk will be in the same location as last year's, right near our neighborhood, at Arbor Trails.

The Chair graciously welcomed Liz when we arrived, and we told her (Francine) about my transplant and she hugged me and was happy for us. We found our seats and I introduced myself to Joan, a woman who'd received a transplant some years ago, and we immediately began discussing doctors, concluding with sharing the recommendations I have for Judith Betts because of her brilliance, caring and comfortable attitude toward patients, and responsiveness to her patients.

The meeting followed a detailed agenda, including updates on projects, a report from our PKD Foundation Rep., Laura, detailed planning for this year's walk with Candace leading the way, a short report on the National Conference from the new chair, Randy, and concluding remarks from the outgoing Francine. Towards the end she announced my transplant, and I quickly gave a report and referred folks to this blog for more information. Liz... to my left and a little behind me in her chair... tearily added some to my story... and later said she was surprised she teared up at that moment. It is still an emotional story when we tell it sometimes... especially to groups who understand the blessing of a kidney transplant when so many folks with PKD end up dying without receiving one. I don't recall the stats on this, but if Randy reads this, maybe he'll comment on that statistic.

Related to the Walk: Candace reported on details so far, and encouraged us all to begin to advertise with posters, flyers, and getting our PKD Walk websites going. She reported on her own door to door experiences and fired us all up about what we can personally do to encourage people to GIVE MONEY for our cause of finding a CURE FOR PKD. Liz and I are inspired... her to take info to U.T. School of Social Work... me to take it to our TNOYS Conference next week.

In talking to Candace about Shayna's role in helping she brought up the idea of Shayna working the Inflatable for the little kids; including watching numbers inside at a time, keeping the big kids out, organizing kids' shoes upon entry and exit, and maybe even bringing some of the Awesome Foursome to help her. I volunteered to work with the Sumo Wrestling activity, which, I guess has to do with getting larger kids and adults into and out of the Sumo Suits. Both of these activities are planned to bring people out for the event and to keep people there for awhile to mix and mingle with PKDers and learn more about PKD and it's affect on families.

There are also plans to have a fire engine there and maybe even a band. All agreed that the "PKD Heaven" display was a great addition last year and it really brings home the seriousness of PKD as a disease that impacts all people. So, we are now in the season of getting out the donations for PKD research and completing Shayna's Community Project, and I, for one, am excited about the event!

Francine concluded the meeting with presenting a plaque the chapter received recognizing their contributions for funding research, which one of the past leaders who has passed on had much to do with.

376) August Clinic Visit

2009-08-08T07:14:00.017-05:00

August 8, 2009
Saturday

Morning Musings: The dog wakes me up at about 6:30... wanting to go out. It is the nicest time of the day here in Austin these days... I stand on the back porch waking up and watch her busying herself about checking all her "places", seeing if there are any early critters out there to grab before they fully wake up... then its off to her other places: where she 'does her business' before inspecting the fence line. I decide its time to water our new hillside plantings, telling myself, "new plantings can be watered on our off days" and I haven't watered ours since last Sunday. I'm also thinking about my dad and hoping he is getting better. He still hasn't contacted us since getting out of the hospital, and based on our last argumentative conversation, I am letting him heal in peace. I heard yesterday from Katie that his computer is "goofy" and so I realize he might not be following this blog or reading the soft emails of cheer and healing I've occasionally sent him. Namaste Dad. Coffee aroma brings me back to the present... got to get a cup...

Last Clinic Appointment: Liz and I went for my clinic visit last Wednesday, after my labs on Tuesday. I had forgotten my lab appointment on the 28th and didn't even realize it til Bernadette called later, asking what happened. I chalked it up to post-vacation brain drain, or, as Kim continues to say, my post operative fuzzy brain. At any rate, it slipped my mind so I went in Tuesday instead. Maxine the LVN brought me into a treatment room and did the weighing and BPing and I have lost 4 pounds since last visit so I was pretty happy about that. My BP was good and this time she didn't give me copies of my labs and I didn't ask.

Dr. Lewis came in and reviewed my labs and did his exam and he continues to think all is going quite well in my healing and adjustment to this foreign kidney. I asked him if he'd read the recent NewYorker article about people who donate kidneys to strangers. This stopped Dr. Lewis up short. Yes he read it and No he didn't like or agree with it one bit. His disagreement went beyond mine: mine being focused on the author's portrayal of dialysis as "a kind of death-in-life" and "gruesome" caught me as one-sided and simplistic and I wondered how many dialysis patients she had really interviewed. Sure, there are lots of people who HATE dialysis, but there are, in my experience, just as many who have adjusted to it and accept it as a necessary part of life on the planet... and who make the best of it as we do with any chore we don't really enjoy. Certainly this blog has tried to put the most positive spin on dialysis and how people can integrate it into their lives as an educational and enlightening experience that helps them appreciate every minute they have on the planet... similar to a near death experiences impact.

Lewis' take? He scowled that the whole thing was "yellow journalism" and that it was representative of what magazines publish these days to sell their copies. From his perspective, the references to antiquated research from the Victorian era of psychology, back in 1967, using "free-associative interviews, dream analysis, and Rorschach and thematic apperception tests" was completely unnecessary, given the amount of more recent research about kidney donation. I agreed wholeheartedly with this, and at the time mentally criticizing myself for being too blindly acquiescing to writers' verbiage. I want to be more thoughtful in reading and compare writings to my own ideas as I am reading rather than data entering them and somehow subconsciously debate them later as the synapses are having difficulty hooking onto them.

Anyway, Lewis made some good points that I agreed with and I came home to reconsider everything the author had written with a new filter. The rest of my appointment went fine. Lewis is concerned by some coughing I have right after meals sometimes, so referred my for a "barium swallow and gastric emptying study"! Sounds impressive, huh? Doc says we should check into it and he referred me for the test and then I make an appointment with a gastroenterologist (Dr. Poreddy) they work with. All my lab work was excellent again, and we are getting ready for busting my 6 month anniversary, on September 9th! We set our next month's appointments for lab and clinic, and I later set appointments for the BSGES and gastro-doc.

All is well.

375) July Report & Vacation

2009-08-02T08:43:00.020-05:00

August 2, 2009
Sunday

Home: I was channel surfing yesterday while napping on and off after a busy week at work... and I happened upon one of Wayne Dyer's* presentations on his new book, Excuses Begone, and it reminded me of something I have learned and forgotten many times. If we direct our thoughts to what we are thankful for and think about... in those last few minutes before we drop into sleep... we want for our future there is a greater likelihood of manifesting those things in our futures. When I got really tired of, and finished with my experience of dialysis and waiting for my new kidney... I think I started focusing on a new kidney and the changes it would bring to my life and being thankful while imagining a new life as I went to sleep... and within a short period of time... we were surprised by that fateful Monday morning call that came. I recall hoping, praying, researching paired exchanges, and expressing my frustrations along with my focus on getting this new kidney. For example see post 330 from February, when I talked about creating positive futures.

And one of the things I badly need to think about when I drift off to dreamland every night... is taking my meds on time. I go thru these spells when I concentrate on the meds and all goes well for a time. I bought a talking alarm clock that has worked fine, except I don't usually keep it with me... it speaks out from the bottom of my briefcase usually... and if, perchance, my briefcase is near me, I get a chuckle when I hear the black bag say softly, "it's nine oclock". It does have one little problem: when I put the talking alarm clock in my pocket, the little buttons get pressed by my pants when I sit down, and then the time, alarm, and settings invariable get changed. Sigh. So, now I have the added chore of sending it back and getting one that is more suited to pants pockets. That difficulty, plus going on vacation and changing time zones and daily schedules has thrown me off my pill taking schedule. I must sheepishly admit that I actually missed a morning med taking once and when I discovered it and immediatly took my meds, it took about three days to get back to my 8 am / 8 pm schedule. Then just last Friday, while doing a workshop I noticed at about noon that I hadn't taken the morning meds yet, so I am now readjusting to that screw-up by adjusting a half hour at a time til I get back to the 8 and 8 schedule. Will be back on schedule tomorrow morning. As I write this I am hoping that Bernadette is no longer following this blog, because I am really too embarrassed about my mistakes to even share them with her. When I think about it I attribute the whole missing meds thing to ADD, and is that an "excuse", Dyer would ask? Well, yes.... and, also the whole deal about when one begins to feel like a healthy human again, which I am particularly happy about these days, then it is easy to forget, or put to the back of my brain, the meds-taking that defines me as still "sick". Does that make sense? The healthier I feel the more the meds seem get forgotten. I must do something about the way I have that framed... and fast. Bernadette's germanic voice rings in my brain, much like mom's used to... "even missing the rejection and anti-infection drugs by a little shortens the long term life of your kidney" and in the vision accompanying the voice she is smiling while shaking her finger at me.

Bit of News: My dad is finally back at home and doing better, according to my sources. Since our last difficult phone call, I have been intent on giving him space (at his request) to recover and heal before "bothering" him again. I am very pleased to hear about him being back home and that is a worry I can put away. When our parents get to that age where we worry about their health and we begin to hear about their aging and we begin to realize they are beginning that stage of moving on... we, have to accept the tenuousness of life on this planet. We don't want to lose them and we also don't want them to suffer. We understand that they become more fragile and yet there is little we can do anymore to assist them. In my dad's case, as he ages he seems to get more in touch with his lack of control over everything and I think that is very tough on him. So, when he asks for being "left alone", no matter how difficult it is to let go, I believe we must respect the aged wishes, no matter what we believe. Some people would have us disregard the aged one's wishes and go on the way we are accustomed to behaving, and I think that is a move that is more about our needs than there needs. So, no matter how much it is unsatisfactory to our needs, we really show our love by accepting the aged one's needs and desires to make their lives as comfortable as they want it to be. I am sending light and best wishes to dad for the time being.

Vacation Report: We recently returned from a week in the mountains of southern New Mexico, the land of enchantment! It was much cooler and wet than Austin has been and we were thrilled by the daily rains in Cloud Croft that remind me of all the years I have gone there over my life. I recalled to Lizzie one story from the hippie years of hitch-hiking from Ruidoso to CC with Anita and somewhere along the route we got caught in a total downpour that soaked us to the bone. Then we got a ride in the bed of a pickup truck and got out in CC to meet our friends (Dale and Jay and maybe some others) and they, plus all the lookers on, were surprised to see drenched us in the sunny skies when not a drop had fallen.

I was delighted to share this mountain experience of afternoon rains again with Liz and for the first conscious time with Shayna Rose. We did some hiking, reading, shopping, and just enjoying the mountain air.

For the last few days we headed back down to Texas and visited UT folks at Balmorhea and old friends at Ft. Davis before heading back to Austin thru Alpine and Marfa. This last picture is enroute to Alpine from Ft. Davis

Notes:
*Sometimes when I need a small pick-me-up, I click on Dyer's Blog and usually can find something that works.

374) In Which I Meet a Real Survivor

2009-07-27T09:03:00.009-05:00

July 7, 2009
Wednesday

Laredo: I am here in Laredo today to facilitate a Youth Leadership Conference that Mario has organized. I arrive at the facility about 30 minutes early and there is a youth there already... asking if he can help me unload and set up. He carries the heaviest of my supplies up the stairs to the second floor of the building and goes about the process of assisting me in any way he can. He tells me he is a college student at the community college in Laredo, and although he is a little older than the rest of the youth he is anxious to be involved with the group and excited about this day of leadership activities designed to pull the group together and to practice some ways of communicating with their community about substance abuse and how to move in the direction of a drug free community.

As other young people arrive and partake of the generous snacks that Mario and adult staff have provided, this young man, Luis, goes around talking to some of them, ever aware of any other way he can help. After the first round of ice-breaking activities and setting the day's goals for the conference, Luis approaches me and reports that he is so happy to be here and participate in this event because it is still new to him to be up and around and able to do these kinds of things.

He continues that three years ago he had a heart transplant! I exclaim, "Wow! I had a kidney transplant last March!" We share our scars and I hear his story... he was born with only one ventrical and lived the first 15 years or so with very limited activity... bed or wheel chair bound with home schooling, etc. until he got the heart transplant and recovery in San Antonio. I am astounded! Here is this young guy who is enjoying... actually LIVING life to the fullest [he reports now riding horses and roping calves ~ which the doner girl did before passing on] and going to school and working on his dad's ranch, and being fully aware of his new abilities to experience reality from a new stand! It is awe-inspiring and adds some humbleness to my situation. This kid had a HEART TRANSPLANT and has a new life to live!

I am just an old guy with some extended years... but, here we have a person who has a full and long life to live because of our modern technology. Later we compare diet, meds (he takes something like 37 a day... all through the day... AND remembers them faithfully!) to my measly eleven every 12 hours; morning and night.

This trip to Laredo, and meeting my young friend, Luis and his peers becomes another of those meaningful experiences that we find in living that help us to remember "all the blessings already are". Thanks to all the youth leaders that were present that day; and especially to Luis. And thanks to Mario and SCAN for again inviting me down to work with them.

373) July Meds and Clinic

2009-07-23T16:16:00.012-05:00

July 7, 2009
Wednesday

Transplant Clinic: Liz and I come in for my clinic visit and Dr. Lewis is right on time. My weight and BP are up slightly and for the first time since coming to these clinic meetings, Maxine, the intake nurse gives me a copy of my lab results, saying "...you wanted to see them I thought". These reports are pretty cool I think. They have a full review of everything that they find with columns of the category, result, flag (if needed), and reference. So, for example, the first line under BASIC has:

Sodium 140 ___ 136-145 meg/L (and so on down to...)
Chloride 108 _H_ 98-107 meg/L (etc..)

So, this gives me some things to highlight while we are waiting between the medical folks and I have 7 H's or L's to ask Dr. Lewis about. After my questions and his answers Lewis does a perfunctory exam and continues to indicate I am doing well, from his perspective.

I tell him I've been having some water retention in my feet and I think it might be from the heat these past few weeks... which is unseasonably hot for the past few weeks. Dr. Lewis doesn't think it’s the heat. He asks how much salt I am eating and I reply, "according to the labs I seem okay..." So, he asks me to "watch" my salt intake for a while. I agree.

Now, from my perspective, this is a constructivist way to give a sort of Ericksonian command or "suggestion" in which you suggest a behavior without ordering it. When orders are given, like, "Stop eating salt" or "Don't eat so much salt", some people's defenses or hesitancies have a difficult time following the directive, either consciously or unconsciously.

So, when we say things like "watch", we circumvent most of the person's defenses and they think of it more like a challenge, rather than a command. "Watch for red pickup trucks" helps you to notice them when they appear in your vision, and you do so because there is no pressure to do it: you just remember to do it.

I probably shall remember my self attending to salt and how much of it I am ingesting.

So, the visit is entertaining and I am going to watch my salt intake and notice the foods that I eat with lots of salt in them.

Bernadette comes in and gives me a new med sheet, noting that I am going to go back to taking the Dapsome because they should have had me on it for 6 months instead of 6 weeks. All other meds are remaining the same.

We are all happy and we begin to set some dates for August labs and clinic.

372) July 4th Weekend Rept

2009-07-04T08:17:00.007-05:00

July 7, 2009
Tuesday

The Weekend Report: It was a busy and friend-filled fourth weekend, with my birthday dinner date to Fino's with Friends... celebrating mine and Ken's birthdays and a belated Cathe birthday too. Then on to the fourth and a fish fry at Lake LBJ with more friends, and Sunday brunch with in laws paying us in migas, pancakes, and eggs florentine for caring for their hamster for a week. As a transplant recipient I can only report that it is so nice to eat almost anything I want now!

Sunday John and Katie visited and Katie stayed for steak and my traditional birthday pineapple upside down cake.

Monday back to work and today I should get my new talking pocket watch in the mail. Of course, since last mention of med time slippage, I've been doing great on remembering the 8 am and 8 pm pill times. Wouldn't you know?

So the USA is 233 years old and I am 120 days post transplant.

Later: An email from Shauny that I want to pass along to you all... with her permission.

"Hi! I know you know I have the volunteer spirit. I wanted to pass this along because when you click on the link to find volunteer opportunities it gives you so many choices. I found two new ways to help today. I will start taking inner-city kids on nature outings for Sierra Club, and I will start being a community outreach volunteer for greater Houston's Collaboration for Children. Volunteering gives me peace of mind. It takes my mind off of my own worries. It makes me grateful. It makes me feel I'm doing more than what is required. I feel I'm giving part of myself and my experiences so that my life has a purpose. These feeling sustain me. I hope you can find something for yourself here. And that it will enrich your life."

Love, Shauny

371) DAD Report

2009-07-02T07:58:00.009-05:00

July 1, 2009
Wednesday

Lunch time: I'm in a thought provoking workshop with Leslie Moore on "parenting", utilizing all the great theorists' ideas in a developmental view of the challenges of parenting... with a number of friends from STAR agencies from Round Rock, Austin, and San Antonio. At lunch Emily from LifeWorks asks about my kidney adventure and reports she was an assistant social worker in a Frensius dialysis center in SA and so I share parts of my story with a knowing person... which is somewhat unusual... since most people don't know so much about renal disease, dialysis, and transplants. I tell her about this blog.

Evening: Dad report via Tracy... my dad transferred today from the hospital to the Towers' assisted living center, Parklane West, where he can stay up to 30 days with specialized care. Tracy reports that she wants him back up in his 17th floor roost by the weekend, but the doctors aren't sure at this point. She also reports that he is doing much better but still doesn't want visitors or calls from anyone. I am glad to hear that he is doing better.

370) TIME for a change & memory boosting too

2009-06-30T17:47:00.013-05:00

June 30, 2009
Tuesday

Home: Today was lab day and I went in for labs at 10 instead of early, like usual... the reason: inadvertently took my meds at 10:50 pm last night... not at the usual 8:00 pm. I have had this slipping med time thing going in the last week or so. While out of town I forgot once or twice and by the time I remembered I was facilitating a training or driving cross country or some such other lame excuse. My getting back to life is impacting my meds regimen!

So, today I went in for labs late and then emailed Bernadette with the reason and my adjustments, since I know that they want the labs at the end of a 12-hour med schedule. Bernadette emailed me back with the following:

"Thanks for letting me know. I will remind Dr. Lewis when he looks at the labs. Your level will be off, since you had a longer time the night before, so the level dropped lower and, therefore will be lower in am as well.

Again I want to suggest that you carry an alarm with you at all times. Taking the meds 12 hours apart is crucial for the long survival of the kidney."

Lizzie was adament this morning that I GET AN ALARM... and then, this afternoon, when I had some free time at the office I ordered one from Amazon. To add to my lame excuseness, I can no longer wear my watch on my left wrist because of my fistula. I can't imagine wearing a watch on my right hand... it just wouldn't be right. So I went online and found a novel idea in a pocket watch;

a talking watch for old people! --->

Maybe I can program it to yell at me in my Uncle's voice " TAKE YOUR DAMN MEDS!!" in that way he used to yell and in the way I set up the computer to yell at Johnny when he was online long years ago. "Get off the damn computer" my Mac used to say... at the very least it has voices and three alarm settings so I should be able to have my pocket buzz or yell or ring out at 8 and 8 continually. That would be a relief.

So, that's my story and I'm sticking to it! Thanks Bernadette and Liz for getting on my butt about this whole thing. I must remember to take meds tonight at 9:30, in the morning at 9:00, tomorrow night at 8:30 ~~~ and then I'll be back on track... a "clean machine" (ala Dale) running on time.

7:15 pm: Bernadette just called with a lab results report:

Creatinine is .09
Cholesterol is 133
Cyclosporine is a little low; "which makes sense since it was low last night and remained low today" with the labs. She talked to Dr. Lewis about it and he says stay on course and we'll check again on July14th.

I told Bernadette I ordered a talking pocket watch to remind me to take my meds every 12 hours and she was delighted. I thanked her for calling with the report.

All remains well. Namaste Bernadette.

369) Weekly Report 3

2009-06-28T09:27:00.027-05:00

June 21, 2009
Sunday

Weekly update: While preparing for writing this blog this morning, I nourish the yard [our watering days are Tuesday & Sunday] and to tell the truth, I haven't really been watering at all yet this year. And, the yellowing of the front yard outside of the shade canopy of our oaks plus the last week's 100 + temperatures finally got to me.

Yesterday Liz and I worked on transplanting some of the plants that have outgrown their pots and decided to put our new Carolina jessamine in some large pots rather than planting them down the hill where we really want them. It is just to damn hot to keep them watered until the heat wave subsides... and that may be in September the way this weather is turning out. Our plan is to grown this vine up the back gate archway and keep it trimmed so it doesn't completely overgrow the whole fence. I like the idea of seeing out into the creek bed. A special thanks to my transplanted gardener and FB friend, Gene Bozarth, for encouraging in the direction of getting back into my landscaping and lawn work... since he has been doing his gardening post-transplant for some time now. I did, however, with Lizzie's directive, wear my medcare vinyl gloves.

Also, this morning, while busying myself around, waiting for each setting of the sprinklers, I happened across another kidney blog by a guy who is a Certified Coach and NLP Trainer, ', 'Coach Richie', and read his most recent post, "Leave the Past in the Past" a good read with good ideas about how PKDers, and I would add, dialysis patients too, can leave their past experiences of pain, discouragement, and dis-ability in the past, and live in the present... describing his taking "many years of understanding, and retraining my mind to change the equation to “doctor” equals “healing!”[...rather than "pain"]

I now have good rapport with all my doctors, and I like to think that they don’t cringe when they know I’m coming in to see them.

Negative medical events that happened in the PAST to you or family members happened…in the PAST!

They don’t equate what will happen to you now or in the future."

...Yet, it might not have to take many years.. we basically can all reframe past negative experiences from our 'younger and less experienced' self's remembered responses to negative events. After all, didn't most of us think of shots as BAD as kids, and now, as adults, we accept that they are good for us. Coach Richie also describes "re-imprinting" which, as a coach, he can probably guide his folks through competently...

Re-imprinting is a conversational hypnosis activity in which the guide takes the person back through their earlier negative imprints, which are powerfully negative or positive experiences that are the building blocks of our current personality. So, when we are anchored into the strengths and resources we have as adults today, and taken back with those resources to a time before each imprinted experience, we can re-experience that event with our present self's resources. For many of these experiences, our present self has all the resources it needs to relive the past experience without having the same negative reaction that was imprinted. In fact, the event is re-imprinted... which, when lived through again, up to the present, makes the necessary adjustments along the way such that our notions of our history are changed. Very cool process actually...

Friday: I was in Wharton for two consulting (TA) gigs [cultural competency & play therapy] at the Texana STAR Program. I met a woman who has had kidney problems throughout her family and we had a nice conversation about kidneys and Bar Mitzvahs, which overflowed to the whole group at lunch and several folks expressed interest in this blog. There were questions about my time on dialysis, taking anti-rejection meds* forever, and healing from transplant. Several folks were surprised about my being up and traveling just 3 months post transplant... another counselor reported about her two friends with transplants; one doing fine and one not doing fine.

I gave them my google label "jack's kidney"...and, according to my FEEDJIT, one of them spent almost an hour perusing it yesterday.

Zoomed back up to Austin and got home about 7 pm... just in time to take Shayna and Liz to

Shabbat Services: ...Kerry Baker's last service as Rabbi of Kol Halev... about 100 or so people were there, including old founding members, new members, and friends of the congregations, like Margo. This was a heartfelt time, remembering the 12 years with Rabbi as our spiritual leader... and I really can't imagine what Kol Halev will be like without him. Some of our friends are leaving the congregation and looking into other congregations, but Liz wants us to stay on, at least through this year of Shayna's Bat Mitzvah, since it is still our Congregation from her perspective; and the only congregation Shayna has ever known. In his last talk with us, Kerry asked the congregation to think about two passages out of Deuteronomy... one thgat describes all of the children of Israel as holy, no matter what... and one later in the Chapter that describes the process of being holy as Jews, suggesting to many of the congregation that it is not enough to simply BE Jewish... one must also ACT as a Jew, including the inner evolution of becoming Jewish... seeing the process of spiritual growth. My own thoughts were that the author is like a salesman, highlighting the product (Jewishness for Life) and then what one must do to possess this Jewishness. Thankfully, there were some Jewish scholars (at least to my way of thinking) at the service, so there was quite a bit of discussion about the meanings of these passages and what they bring to the congregation today... on Kerry's last service. Toward the end of the service, Shayna said my dad's name during the Mi Sheberakh, one of the central Jewish prayers for those who are ill or recovering from illness... and I was proud she thought of that.

In ending, Kerry brought his family up front and expressed his sadness about moving on, as well as his excitement about new beginnings... one for him and one for us who remain... challenging the congregation to re-build Kol Halev in a way that reflects what the congregation wants and needs to continue. The closing song was led by Amy the Cantorial Soloist, and perhaps written by her... and had some memorable verses, as follows:

"Bar mitzvahs and weddings
And 3am calls
The good times and bad times
You've been there for all
We've loved Rebbe's tisches
And 45 minute d'vars
Torah study on Tuesday
And the sermon on Star Wars...

You led the discussions
Without any notes
You know all of Austin
And that's not a joke
We'll miss you, for sure
Especially
Group Aliyot
And Ask Da Rebbe"

There was a special sweet oneg afterward and lots of tears and hugging. Reminds me again... Everything changes... change is the only constant...

DAD Report: As of Friday, my dad is still in the hospital in SA and the only ongoing news of his situation comes from Michael, via Carol... who calls Mike for reports (she is now the "communicator" ala Satir... the role my Mom played before she died... part of the reason communications between dad, Mike, and me have suffered). Added to our dad data bank is the info that dad is still in the hospital because they're 1) continuing to treat the edema in his legs and, according to Mike: 2) he also has had a bad reaction to some meds for depression... and, he should be stable and out any day now. My info is via Liz, via Carol, via Michael... and, I think more and more that our conversation may have been convoluted via the mis-medications... although I cannot throw out the idea completely that people's beliefs drive their sensitivities...

As all things seem to have some sort of serendipity... and I had been drive-time pondering my dad's condition and how to stay in touch while respecting his need for privacy. Then, on Friday, in Wharton, in an activity I gave the counselors to draw a map of "who you are and where you came from", there were three maps and their corresponding stories of histories of serious divisions between the generations of participant's families; either due to marriage outside the faith or the ethnic group... and these stories informed my own one [divorce outside the belief system], so I listened carefully for ideas and insight. One person, whose map was one of perpetual connectedness through all the generations of her "family" brought her to comment how difficult it is for her to work with families where there is a breaking of the ties... of where the parent wants to throw the child away... and the rest of us nodded in relation to that disclosure, understanding too well that client's distress. Although I don't really believe in the concept of "transference" I must admit its fleeting image crossed my mind right then.

The earlier part of the week is just a blur now... so, remember folks... "all the blessings already are..."

Notes:
* Related to the question of current meds: right now I am taking:

Neoral ~ 1 - 100 mg @ 8 am and 8 pm
Neoral ~ 1 - 25 mg @ 8 am and 8 pm
Myfortic ~ 2 - 180 mg @ 8 am and 8 pm
Valcyte ~ 1 - 450 mg. every other day
Norvasc ~ 1/2 - 10 mg @ 8 am
Synthroid ~ 1 - .25 mg @ 8 am
Multivitamin ~ 1 @ 8 am
Paroxetine ~ 1 - 20 mg @ 8 am
Crestor ~ 1 - 10 mg @ 8 pm
Sensipar ~ 1 - 30 mg @ 8 am

368: TW Three

2009-06-21T17:21:00.026-05:00

June 14, 2009
Sunday

That Was The Week That Was... remember that show from years ago? Since it seems I'm moving into a schedule of blogging weekly... this week feels like a jumble of events that expanded through out the week, like a string of pearls, each with their own little lesson, or memory, or challenge for me.

Monday found me driving to La Marque... partway between Houston and Galveston... to do a training for the STAR folks down there... I walked into the church where the training was being hosted and within minutes ran into one of my students from UT, and that was a joy. She and her husband had settled into their new post IKE lives very favorably, with Ken taking over a coffee house and Holly switching employers and doing groups in schools. She rushes off to eat lunch and go to work, and I end up spending the lunch hour meeting with their Executive Director and explaining and supporting and processing his feelings about the difficulties with the state funding source. For me, in my state of return to my "retirement job" and getting back out to work with these devoted agencies, it is depressing to hear from all these people these days. It makes me quite sad the direction of the crisis intervention and runaway prevention program I have been supporting and 'believing in' for over twenty years now. The developments and changes in this basic community-based program are becoming the albatross hanging heavily on my neck... and bringing me down at this time when I am trying to use the passion for training as a healing force for my kidney. Actually the work with the staff went well and was energizing... I could tell throughout my drive home afterward. And, I did stop at Rick's in Ellenger for a pound of brisket to match with Liz's potato salad for dinner. Yum.

Tuesday was blood work and paperwork...
Wednesday I go for a doctor's appointment and see Bernadette and Doc Lewis... he comes in and says "Hi" and follows with "Boy, that kidney is an M1 Abrams Tank of a kidney isn't it?" and I respond with an "Uh huh..." trying to picture what he is describing... "a tank as a metaphor for a kidney.... BIG... Powerful... a blast the Hell outa ANYTHING kidney! YEAH!..." He twinkles and I smile. It is doing good. He continues to say things are as good as they could be. Since my 3 month anniversary (June 9th) is past, I now am in phase where there is a very low chance of "acute rejection" from now on. He continues talking and gives me a cursory physical by looking in my mouth, feeling my neck, pushing on my abdomen and thats about it.

I tell him about getting our final bill of 173 K and my wondering... "If this was an easy transplant with nothing really going wrong, etcetera, could we say that the price was about what an easy transplant would cost?" Dr. Lewis didn't want to go there; saying that he doesn't understand billing, insurance companies, or anything about how these things are valued. He continued that no kidney transplant is easy or simple... it is a major surgery and you cannot really equate a surgery where nothing goes wrong, the time spent, and the lack of problems with the price. ( I get that it is not like taking your car in, where you expect to pay more if it is complicated and they have to do more than you expected.) So that mystery remains... maybe I should ask the insurance carriers....

Doctor Lewis concludes that all is going really well; there are no meds changes for now... and he'll see me again towards the end of July. Bernadette comes in a little later with the poop sheet with no meds changes and two appointments for blood work and my next doctor's appointment.

Liz and I get outa there early and I go back to work for awhile...

Friday: Up early and drive to Dallas for two Technical Assistance meetings with Promise House; one about resolving conflicts in the shelter and one about confidentiality parameters with youth... the highlight being that this group thought that Texas follows the Tarasoff ruling in California: them finding out that Texas is NOT a Tarasoff state! Afterward I had a talk with the supervisor about the kinds of difficulties that arise when shelters and counseling centers try to collaborate with youth and families.

Driving home was a quick trip hopping from NPR All Things Considered on KERA to ATC on Waco's KWBU to Austin's KUT and arriving home about 8. My mother in law is staying with us this weekend for my nephew's birthday and we visited before I crashed out, have worked from 6 to 8 and driven about 600 miles...

Saturday: My dad calls mid-afternoon to say he is in the hospital in SA, and has been since last Wednesday... thought I should know... and adamant that I NOT come down to see him. He reports that it is CHF (cardiac heart failure), which sounds pretty serious to me and he adds that it comes from his edema in the legs and that he intends to get out on Monday to go for a skin cancer treatment at another medical facility. My reaction is to question him about coming down, which disintegrates into an argument about our topsyturvy relationship and ends with me saying that I hope he feels better and at least no one slams the phone down. I immediately call Carol to inform her and she calls Tracy and finds out that they (Mike & Tracy) intend to go talk to the doctors tonight) and that my dad has demanded they not come see him either... so, then Carol calls him and he tells her not to come too. So, everyone is ordered not to come and I feel minisculey better... and wish I had just gathered info from him and let all the rest go. So it goes in the Dad Department.

The evening gives me an opportunity to get beyond the afternoon as the family celebrates little David's 7th... adults consuming their drinks of choice, snacking on guacamole, and then eating grass fed cow steaks, broiled squash, and chocolate b-day cake while the kids run crazy all over the house. Lizzie and I ham it up for the photographer, Mitt. Great time til I get tired and catch a ride home early with Larry & Diane. Then the worries about dad return til I fall asleep... so it goes in the Jack Department.

Sunday: Father's Day and I think about my dad as Lizzie prepares breakfast of strawberry and blueberry crepes. MIL Joan, Katie, Shayna, and Liz all wish me a happy father's day and Johnny calls and all is well at home.

367) Flag Day 2009

2009-06-14T15:18:00.028-05:00

June 14, 2009
Sunday

...been meaning to post for at least five days now... and the more I get back into my pre-dialysis life, the more I seem to live life rather than write it. So, a brief catchup for all you who care or follow this as a survivor's log of a transplant recipient. It's Sunday and Liz and Shayna are up at Camp Kachina, checking Shayna and the Awesome Foursome into a cabin for a week of blistering heat and camp activities in the scrubbiest camp I've ever seen... that's another story... So, quick run through of a busy week.

Tuesday: Lab work... went smoothly and I am getting used to having to be checked in to the hospital every time... going thru the signatures, warnings, assignments of insurance, wrist banding, etc., and then visiting with Ms. Peggy as she pokes me and I give a sample of my precious bodily fluids and set them in a box hole in the wall. There is something very weird about that whole process. I pee and Peggy is on the other side of the flimsy wall with a rectangular hole cut through it... only two aluminum doors separating us... I can hear her and she me... I could just stand up from the lab chair and pee right there for all the privacy the whole thing affords. It's kinda like being married to Peggy... like I say... weird.

Pee talk and pee observation and pee collecting is such an important part of any kidney difficulties so folks ought to get used to it or forget participating in kidney treatments of any kind. Makes me remember adolescence and my friend, Anita, who has disappeared from my circle, and maybe from existence... although I hope not. We used to talk pee plenty back in the old days.

Tuesday evening Bernadette calls with her now usual "all things excellent" calls... and, without even any confusing questions. She reports my creatinine is 1.2, which is good.

Wednesday I leave the house at 6 am and spend the next couple hours listening to Morning Edition as I drive my rental Pontiac G6 out into the hill country chasing the dark to Fredricksburg on auto-pilot, drinking my coffee and munching on a few breakfast tacos. I decide to turn left and head down the hill to K-ville and then punch it on I-10 west where the speed limit is now 80. I am driving to Alpine to do a workshop for the Texas Council of Family Violence's Criminal Justice System Response Training back thru the hill country and then over the Edward's Plateau to the place where you can take a sharp left and drive right down thru a wide valley, south and then right up through the foothills to Alpine... a drive that reminds me of my west Texas homeland, and thinking about two simultaneous topics; Craig Childs' Secret Knowledge of Water and a new way to introduce my crisis intervention workshop to my audience. I am envisioning an expansion of a continuum of crises along a curve [like the landscapes out here that seem to stretch from side to side rather than vertically] from common situational and developmental crises [the vertical view], based on the many labels people use... a landscape of phobias, PSTD's, suppressions, dissociations, denials, psychoses, and catatonias. Then I plan to bring the participants back
again to the idea that all crises can be worked from the process of identifying the lethality, finding the known and forgotten coping strategies and assisting the person to their coping before jumping to the work of resolution. These ideas are formulating in my brain as memories of Childs' descriptions of Indians mapping the secret water holes throughout the desert... and simmer in my visualized Permian Basin of surrounding mountains, and the flatland between them zoom by my G6. I drive down thru that wide valley to Alpine, watching my gas gauge go down too, thru empty to the flashing notice... "Get Gas Now!" and that takes my focus as I cruise into town.

Two hours of workshop, visiting with new friends, and I drive out of there, feeling like it went okay, given it is my first outing post Mordechai's entrance into my life... and decide to drive on to Marfa and out that way... through Marathon, past the Glass Mountains --->
and back up to the speed ribbon called I-10 East... running from the sun to the darkness of HWY 290 and then through the hill country, watching for deer and drunks... making it home by 11:30 pm. What a drive.

Wednesday: Back to the budding crisis at work... budget losses and all the staff anxiety and adjustments we must make to continue our work with our network members, and preparing for an upcoming Board meeting on Friday.

I, however, continue to count my lucky stars, taking care of myself so I can take care of others.

By Saturday Lizzie and I are ready for a date ---> going out to Thomas & Gails' Sycamore Creek venue to hear Jonathan Byrd, where we see friends (Marty, Katie, & Mitch) and bask in the breeze of a warmish evening, enjoying the music and being together in the hills northwest of Dripping Springs... the highlight being running into Joy and connecting on FB later. So, we are all really fortunate to be on the planet! As LMF said, "Life is full and beautiful. Celebrate life with your friends everyday. After they are no longer it is too late."

366) Another Lab Call from Bernadette

2009-06-06T09:20:00.025-05:00

June 5, 2009
Friday

Lab Call: Bernadette called me at work this afternoon to check on my pill-taking behavior. She asked if I was taking my myfortic like I am supposed to. Since I am at work, she has to describe the pill (the greenish grey one) and I / we changed the dosage to 2 in the morning and 1 at night, from 2 and 2. I remember some changes and thought we were changing the Nueral from 1 and 2 to 1 and 1... and I can feel-see the fuzz (VK synthesis) spreading thru my brain, like dry ice smoke spreading on a stage behind the ballet. I pull myself together and vocalize.... ummm... tell her I could answer better if I had my med schedule and box of pills right in front of me to look at... and we decide I'll call her when I get home in an hour or so.

And then I ask, "So, what's the problem?"... to which she answers that my myfortic level is high... she further explains the lab results on myfortic come a few days after the results she calls me about the night of my lab work (like last post). And, in those results my level of myfortic is 6.3!

Hmmmm. I am searching the corners of my brain for a chart of levels of myfortic. Hmmm... do I find that chart? Well, of course not, having no recolection of myfortic even having levels. "So, what does that mean?", I enquire, in a worried fashion. Bernadette gives me an answer that goes in one ear and out the other because I am listening for words like "delerium", "incontenance", or "impotence"! Evidently it is not 'that' important... and she says she is also calling Dr. Lewis for his thoughts.

I email myself at home to remind me to call her back.

Later: I get home to a sparklingly clean house ~~ our new house cleaner, Adrian (another story) has been here and I reminds me of entering my mom's house when I was a kid, or like going to a hotel that is emaculate and decorated just like my house (how comforting). I like it a lot.

I have a snack and then call Bernadette back.

"Hi. I have my current Transplant Medication Sheet and my pill box right in front of me and am... I am taking 2 myfortics in the morning and one in the evening." She says "right" and I go on: "and on little stinky cap in the morning and one at night..." ..."Right". "So, is that what I'm posed to do?" And I add that when I compare that to my open boxes on my pill box I can verify that I filled it correctly, and tell her that.

Bernadette verifies that it sounds like I am doing it right and adds that Dr. Lewis said to just carry on and we'll check the levels again next Tuesday and see what's what. I reply that that doesn't make me feel that much better and she says something about sometimes these things just happen and I shouldn't worry about it but make sure I double check as I fill the box each time... and I am doing good... and to have a good weekend. After our call I go back and check again going paper by box by paper until I am sure each compartment in the pill box is right. According to the internet (Scott & White), "Symptoms of a mycophenolic acid overdose may include nausea, vomiting, diarrhea, and unusual bleeding or bruising." and I haven't had any of that recently. WHEW!

"Am I paranoid?" I wonder as I turn on the News and decide what to have for dinner.

Liz & Shayna are down for the last weekend of KFF which I still can't go to because of the DIRT and drifting microbes from people who forgo their wellness to bask in the music... in other words... come to the ranch sick with colds, flu, and God knows what else. I keep up through peoples' Facebook notes and pics and the pics Theresa, Pat, and Susie send me via email. Thanks Folks! And of course the phone calls from Lizzie and Shayna.

From Last Weekend: At right is a picture of Shayna & Calla serving dinner on the KFF Volunteer Staff Kitchen Krew ~~~~~~>
This is the first year Shayna is officially on the krew.

365) Positive Feedback from Bernadette

2009-05-27T17:00:00.002-05:00

May 26, 2009
Tuesday

Lab Call: Tonite Bernadette called me at work, at home, and then, later again, at home... missing me the first few times. She called to say my labs were perfect! ...couldn't be any better. No changes in meds! My creatinine is 1.0 and I am a "clean machine" to quote my old buddy Dale from EP. Yahooooo

I shared with Bernadette that I like a professional that goes outa her way to give out good new as well as the bad.... and she replied (or I hallucinated that she replied) something to the effect that is her favorite type of news to report.

"Namaste Bernadette!"

364) Memorial Day Weekend

2009-05-25T09:29:00.019-05:00

May 25, 2009
Monday

Transplant Report: Last Tuesday, the 26th was lab day and it went off without a hitch. The regimen seems kinda boring to me right now: 5 Labs and an Appointment... what can I say about that? Maybe at some point in this post I'll pontificate about staying out of the dirt and how difficult that is.

Work Report: I did a full 8-hour day at work on Tuesday, after Labs! First full day since returning to work on April 23 or there-abouts. Mostly I take my time in the morning and do my meds and charting regimen, slowly wake up and get to the office sometime between 9 and 10. I stay until I am tired, which has been longer and longer each week. Plus things are getting busy at the office so I am probably gonna be at almost full time this next week. Of note, Christina set us up with a TNOYS Facebook so you can now find us on Facebook by clicking Texas Network of Youth Services and you can become our "fan" and even send a contribution in these dour times. We have been working on submitting grant applications to solidify our place in the non-profit world of youth services.

The office has continued to do a great job of keeping the place antiseptic... with anti-bacterial soap and posters in the rest rooms about washing your hands as long as it takes to sing a verse of "Happy Birthday to You"; and bottles of hand sanitizer in every public space.

The Dirt on Gardening: I have been trying to locate all the specs on why I shouldn't garden for the first year or so, post transplant (<-- like Bernadette said). Not much came up in my Google search over the last hour or so. I did post a question on the NKF Listserve for transplantees. Basically, as I get it, there are all kinds of microbes, bird poop, animal poop, mold spores, and 'all kind of mean and nasty things' in the dirt and my propensity, at this point in my acceptance of Mordechai the Miracle Kidney it is still very tenuous in the infection / rejection department... and, therefore digging, potting, planting, and such are not appropriate hobbies for me. DRAT! I have that itch every weekend to get out there and do yard work. Bernadette suggests that if the little devil on my right shoulder makes me, I should wear double gloves (surgical under gardening) a mask, and mega sunscreen. Oh yeah... the sun is not my friend either.

So, yesterday, about the crack of noon, when Shayna rolled out, we got to work on the front yard's first edging and mowing and clipping and sweeping, it was Shayna the Yard Girl's edging and mowing debut, with Lizzie the Helper sweeping. I was relegated to some distance trimming (20" up from the business end of the loppers), and sharpening the cutting edges of the edger, lawnmower blades, and the loppers. This is Shayna's first time edging and mowing and it took her some time to learn edging. She stuck it out however, and did an adequate job. The mowing was easier for her once I showed her the tricks of electric lawn mowing and she did a good job with that!

This is also the first weekend of the Kerrville Folk Festival and WE are NOT there... too much Dirt and People for me to get in the middle of this year. Another DRAT. And, for the first time ever, some of our friends are sending phone pics and notes via Facebook and I can't figure out if that makes it worse or better! I love hearing from them and seeing their pics.... and, it reminds me and makes me miss being there. For example, my friend Andrea posted, "(I'm)... slightly surprised to find drama in Forest Lawn"... making me very curious... Forest Lawn is the staff campground, where there is supposed to be QUIET and no drama. Lizzie and Shayna are going the next two weekends, so I'll be home alone to work on projects, etc.

So, instead of sitting around moping all weekend, Steve and Mary Lou had their once-every-so-often Memorial Day Party & BBQ* and invited us, Kim, David & Little Emma, and several other families with kids. It has been raining off and on all weekend (traditionally the rainiest weekend of the year in Austin) and yet the skies cleared before the get-together) and I got to slather myself with sun screen! The food and company was good and we got home early too.

So, today is quiet and restful. Have a good Memorial Day!

Notes:
* Instead of uploading pics here, I am experimenting with a link to them on Shutterfly!

363) Two Months Post Transplant

2009-05-16T09:13:00.044-05:00

May 16, 2009
Saturday

So, it's been awhile since I posted and it's been awhile since my last doctor's appointment and lab work. I am still adjusting to the regimen of a transplant person. Last Saturday, the 9th marked the 2 month anniversary of my transplant! There are specific stages of "healing" after a transplant that go something like ---> 1) first week; 2) first month; 3) first three months; 4) first 6 months; and, 5) first year... and you can claim an Anniversary after completion of each stage: at least I do since I think of anniversaries as holidays. So, even though it's only 2 months, to me it is an anniversary. On the 9th Shayna celebrated by beginning the her spring soccer tournament by winning 2 of the three games and tieing the third. Afterwards, Shayna and I go shopping for Mother's Day. I stay home from the games... still not wanting to be in crowds much. Other notes of note are detailed after my Transplant Report.

Post-Transplant Report:
My last lab day was scheduled for May 12th and it was after a 12 hour fast. So, lo and behold, on May11th I started fasting at 7 pm and then forgot my meds and didn't take them til 9:20 pm. This meds and fasting process is meant to conclude with blood work at 7 am... so I figured that at 7 am I'd still have until 9:20 for my meds level to be where they want it for the lab work (see Post # 354, April 4th) and I called Bernadette at about 8 am and she agreed and said that I should repeat the process again Tuesday nite and have labs Wednesday the 13th... the same day as my clinic appointment.

I fasted again on Tuesday, from 7 to 7 and made sure I took my meds at 8 pm sharp and then went for labs Wednesday morning at 7:30 for labs. Of course, that morning was 2 months since my last "sign in" at S. Austin Med Center, so I had to go thru the whole damn sign-in process again and that took 1/2 an hour... so Peggy took my blood about 8:00 instead of 7:30! "The best plans of men and mice often go awry"*

Post Transplant Clinic # 4:
Later in the afternoon I meet Liz at NAMC for clinic and there too, we have to go thru the whole half hour re-registration, making us late for the appointment at 2:00. Maxine is waiting for us half way down the hall and quickly ushers us in for Part 1 of the clinic, the taking of my weight (167 on their equipment - 162 @ home), temp, and BP (145/75). Then Maxine asks all the normal questions like pain?, nausiousness?, diahrea?, headaches?, pee color?, night sweats?, etc. Then she ushers us into the treatment room and Dr. Lewis comes in in about 2 minutes (unusual) and asks, "How are you doing Jack?" and I answer, "Pretty good." and then he goes thru many of the same questions and we discuss my recent groin pain when running and scrotum pain when they bounce. "Hmmm. Slip into a gown and I'll be right back." I do and he does... and he does a physical exam and concludes that all is well down there and I probably just over did it or lifted something too heavy... oh yeah, "Maybe it was moving the new stove?" I remember.

His report to me is that all is as good as it could be at this point for a person my age and size. "Am I small?" I query... "No; large" which surprises me... I never think of myself as 'large' except in my girth. He continues with the following report in some sort of order that Liz and I recap at Spider House later: "Creatinine 1.0; blood count is Good; Cholesterol okay... low; Bad Cholesterol little high but also good; meds all good ---> no changes this time; I am extending your Dapsone for another 6 weeks; you're doing great! So, I think we'll go for 5 weeks before I see you again; but I want you to have labs every week during that time."

My Report to Lewis includes 1) questions about sleeping more and he thinks it may be that I need more sleep or am pushing it too hard, or even possibly some post-transplant depression... he's not worried about it. 2) My question about getting back out 'on the road again' for a workshop in Alpine on June 15th, and dealing with hand-shaking, etc. He suggests I be careful to not pick my nose while shaking hands with people and head to the rest room afterward and wash up. Take some of my anti-bacterial wipes for doorknobs, etc. We conclude with my reporting a little about TNOYS probably losing a big grant and my putting in a letter of inquiry for a big grant. He asks about what it would fund and I briefly tell him it is a 3-year study for our network agencies that would look at best practices in ensuring fidelity of face-to-face practice to training. I like good docs (and I cannot lie)..., like Lewis, who show interest in their patients' lives outside of their medical needs, call them by name, and take the few extra minutes to have a 'relationship'. Research shows that building a relationship is an important common factor supporting positive outcomes (maybe in medicine too, according to Bill Moyers).

Then Dr. Lewis leaves and Bernadette enters and says, in response to Liz's question, that I no longer have to chart my pee! Yippee!... but she does want me to continue to chart fluid intake, and weight, temp. and BP in the mornings so we have a record in case we need it.
I discuss briefly with her my fluid intake going to Hell since going back to work and she can't understand why I can't just drink 2000 ml. while working. I reply that I get into some project and focus on it for hours without remembering to take a break for lunch or a drink. "Don't you get thirsty?" she wonders and I either think, or say, "Yes, but, I keep working until there is a good stopping place... like when my brain hits a dry spot :) or I get to a point where I need to sit back and think... and then I'll take a drink.... but, that only happens once or twice a day."

So, she says something like, "You just need to take 4 bottles of water to work and set them in front of you on your desk" and I reluctantly nod my head. She is right, of course. I do need to find a way to drink more H2O and get the intake up from about 1350 a day to the required 2000. She also adds that I can watch my pee (without measuring it) and when it gets too dark or cloudy stop for a good long drink. She gives us the new and updated Med sheet for my notebook, including the following new information: 1) Walgreens @ Brodie for the continued meds ; 2) Labs on 5/19, 5/26, 6/9, and 6/19 at 7:30 am at S. Austin Hosp EXPRESS Lab, and 3) Transplant Clinic on 6/17 at 1:20 pm - register at 12:50 pm.

All in all, I am quite happy with the clinic today... and Liz and I have a short date at Spider House with iced coffee and small talk.

Other News of Interest:
May 8 ~ Grandma Joan Comes to Town: Big weekend (David's birthday, Mom's Day, etc.) so Joan comes down from Dallas and we all celebrate by going to Fino's for dinner after work. Brother-in-law John baby sits the three young boys while the "adults" plus Shayna go out for a nice dinner at Fino's which for me was okay food for too much money. But, everyone liked it and four of the girls went directly to the ballet afterward. I went on home watched pro basketball.

May 10 ~ Mother's Day: Shayna gave her mom an African violet and we had a nice quiet morning before meeting the relations at Eastside Cafe for a wonderful brunch. We left the group early in order to get Shayna to the last two games of the Soccer tourney... and were only about 10 minutes late for the first game. I went home... and the Kick Kats won the first game easily and then played for the championship against the Starlettes again! I went over to the fields for the second half and watched the Kats score 4 points in the half, winning over the Starlettes 6 to 2! Once again the Kats are the champions of their league (U12)! This weekend (5/16) they are in Victoria and have won the first game in that tourney 5 to 0. According to Liz, Shayna is playing great: and while we are on the phone the Kats score two goals in the second half of their second game and are now ahead 4 to 0 in the game they are playing right now! Wish I could be there.

May 12 ~ Shayna's Induction to the National Junior Honor Society: On Tuesday evening Shayna was inducted into the NJHS, as was Liz, many years ago. There were tons of parents there and I tried to not get too close to anyone. My Pics were pretty blurry because they were taken from half way up the bleachers that were bouncing with applause... it was fun watching Shayna look proud and happy looking dressed up with a number of her Kick Kats team and at least one of the Awesome Foursome too. Note that in the second pic Shayna and the NJHS Officer right behind her have on the SAME dress! Shayna was okay with it and snickering, and the other girl was definitely NOT okay with it and didn't even shake Shayna's hand. They stayed far apart during the reception afterward. Lizzie and I laughed about the whole thing and a few of Shayna's friends mentioned it to her. The last pic is of Shayna and Jaimie, one of the Awesome Foursome, who figure strongly in a story Shayna won awards for and which the school had published!

May 14 ~ Shayna's Play Performed: Since Shayna's book was published, the school's theater group picked it as one of three to develop into a short play, that Shayna titled "I'm Sorry Jay" and then worked along with the director to select the actors, re-write the story into dialogue, and work with the theater group on all the aspects of the production. Liz went to see the play on May 14th although I had to work on high priority stuff at TNOYS. After the play, Shayna and the Director stayed on stage to answer students' questions about the production. It was very cool! (Pics of the production coming soon).

Back to Today, May 16th: These longer posts take time... I have to find a happy medium... today all is quiet around here... raining a lot with a comfortable 75 degree temperature allowing me to have all the windows up. I am missing lawn work (needs mowing badly) and all the flowers (especially the hibiscus, petunias, kolanches, roses, red yucca, and lantana) are blooming so it looks overgrown out there but quite colorful. The "depressed" state seems to have moved on and work is doing fairly well at keeping me busy and motivated. I am still very happy about being able to eat more like I like to eat and taking meds only twice a day instead of taking binders after every meal.

To my friends still on dialysis: envision getting your transplant so you can once again enjoy life without the phosphorous blues! Namaste my friends on Lifealysis.

Notes:
* Quote from Robert Burns retrieved online from Robert Burns Country.

362) Advocacy Opportunity

2009-05-06T08:46:00.006-05:00

May 6, 2009
Wednesday

From the Dialysis Patient Citizens (DPC) advocacy group, we all got a request to advocate for legislation to support the Kidney Transplant Patient's Act of 2009 (S 565 / HR 1458). This legislation will help transplant patients. Currently the Medicare ESRD Program only covers immuno-suppressant drugs for 36 months following a transplant. With the average annual cost of $17,000 a year, patients must find a way to pay for their medications after the initial 36 months. When passed the legislation will allow Medicare to cover these costs for the life of the patient. As quoted from the DPC newsletter:

"RX individuals who receive an organ transplant must take immunosuppressant drugs to reduce the likelihood that their body will reject the transplanted organ. Currently the Medicare End Stage Renal Disease (ESRD) program pays the majority of dialysis and transplantation costs for eligible ESRD patients, but only covers immunosuppressant drugs for 36 months following a transplant. Many dialysis patients find this policy a barrier to seeking a kidney transplant. The DPC Board of Directors recently passed a new policy in support of Immunosuppressant Drug Coverage for the life of a kidney transplant.

Congress has introduced a bill to provide kidney transplant patients with life time immunosuppressant drug coverage: The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009 (S 565 HR 1458). Extending the current benefit beyond 36 months would result in a net savings to Medicare, provide transplantation as an affordable option to more patients, and ensure that those individuals in whom Medicare has invested can continue to receive the necessary drugs to reduce their chance of rejection.

Please join DPC in supporting the extension of Medicare coverage for immunosuppressant medications. Contact your members of Congress and ask them to support the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009!"

This is an opportunity to have a say and support this important legislation. Please consider this opportunity to let your legislators know what YOU think. Of course, I am supporting the legislation because it impacts me personally.

361) Returning to Work

2009-04-28T13:40:00.010-05:00

April 27, 2009
Thuesday

Morning: Went in for Labs this morning... on time... but had to wait for awhile and didn't get home to take 8 am meds til 8:30. Today I am returning to work again. Just preparing for work took longer than I expected, starting last Friday, when I stopped by the office to talk to folks about preparing for my return. Fortunately we have several germ-o-phobes in the office who agreed to everything I am saying and offered to help. It is very helpful to have employers' assistance in ensuring a work environment that is as antiseptic as possible when a transplant recipient returns to their workplace. This is the email that our ED sent out:
Three major points:

1. Jack will assume responsibility for keeping his hands clean; that is number one – minimizes transmission of anything

2. Don’t even think about coming to work sick. If you feel good enough to do some work at home, with your supervisor’s approval you can arrange to do work at home – of course that depends on having a computer with which you can access your work computer.

3. If you feel you may be not sick but still possibly carrying around some unwelcome germs (not sure if you have a cold or allergies, for example) – let Jack know to stay away from you, and be EXTRA cautious about limiting your ability to spread germs.

Then there are a variety of precautions we should all keep in mind:

· Wash hands at least after using the bathroom and before eating; Faith will post info about this in bathrooms.

· Use Lysol spray to clean off door knobs, faucets, light switches, toilet flush handle, and other key places that everyone has to touch.

· Don’t use Jack’s desk, computer, phone, etc.; he will keep his office a sanitized area.

· Keep conference room tables sanitized; perhaps use this as area to meet with Jack.

Faith is making some hand-washing posters for the two bathrooms.

My own preparation this morning included lists of things to take (pee bottle, chart, and several items I might need) and I finally get to the office about 9:45 or so. The day was fairly normal and I felt like I was getting back into the stream, so to speak; catching up on projects, updating my time sheet, and getting my future appointments, etc. on the calendar. Met with Kim and Theresa about status of projects and with Christine about the Legislature and the only real difference I notice is using the bathroom five times in 5 hours, versus using it about once a week before the arrival of Mordechia.

The advice I have for people going back to work is... "Go slow to get going". Today I work about 5 to 6 hours and intend to build upon that as I go.

Call from Bernadette: Back at home, late afternoon... Bernadette calls and reports that my labs were "perfect"... therefore, no changes in meds this week... and my creatinine was 1.0!
I had emailed her about concerns about getting back out on the road and training and she discussed them with Dr. Lewis: "You can do anything you want to do. Take a mask if you fly and if you are sitting next to a cougher, put the mask on. Don't put the mask on before getting on board... they might think you're a terrorist. Otherwise, avoid shaking hands and don't get too close to people."

So it goes... getting back into the river of work.

Note: Katie's 20th birthday is today... We had the kids over for a nice steak dinner on Sunday night and Katie brought her friend Jenna. Nice time.