385) HAVE A SAY --- TODAY!

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

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

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

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

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

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

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.

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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.