September 12, 2009SaturdayAbiding Love Lutheran Church: The Austin Chapter of the PKD Foundation met l
ast 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
irts.
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!
September 2, 2009WednesdayNAMC: "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.
ast 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).
irts.
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!
