389) Our 2009 Holiday Card

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

December 20, 2009

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 s
tation 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, thi
nk 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 y
our 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

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

December 2, 2009

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

November 24, 2009

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!

November 11, 2009

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

November 7, 2009

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

October 21, 2009

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

October 14, 2009

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

October 11, 2009

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.



September 12, 2009

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-sh

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

September 2, 2009

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

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

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

August 16, 2009


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

August 15, 2009

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, conclu
ding 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

August 8, 2009

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

August 2, 2009

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


*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

July 7, 2009

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

July 7, 2009

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

July 7, 2009

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 do
wn 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.

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

July 1, 2009

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.

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

June 30, 2009

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 sch
edule. 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:

  1. Creatinine is .09
  2. Cholesterol is 133
  3. 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.