08 Feb Live From Dialysis, Post #9

Good morning!

Since the Through The Storm event last week, I have been both floating with delight and dragging myself along… The event itself was amazing. Sitting on stage in front of a full house was … fulfilling, fun, heart-warming… I felt my batteries hugely re-charged. Inspiring on so many levels. Elizabeth Lesser is just stupendous. It’s hard to look bad on stage next to her.

And, simultaneously, my body has been going through some “adaptive” behavior… I have been, in just the past two weeks or so, acting like a real kidney patient. Edema, headaches, high blood pressure, difficulty sleeping… I wake up and my eyes are puffy, my face a new shape… my dialysis team is as perplexed as I am in how to manage it. We are tinkering with the formulas, and today I am hopeful that there may be a way out of the woods… but it’s been painful and challenging.

Two days ago, one of the nephrologists came through dialysis, making their rounds. He stopped and spoke with me about my oxymoronic interplay of fluid retention and headaches… Confounded, the words came out of his mouth, “well, we’ll treat the numbers, that’s what we do, we treat the numbers”

What a moment for me. Philosophically, personally… I can’t recall ever being so face-to-face with an opposing approach to medicine, and that he was speaking ABOUT ME as the set of numbers!  Shocking, really.  And then, as time passed, I get where he’s coming from, I get the technician’s role that he assumes, most likely to protect himself from the sea of humanity that he has to navigate every day and keep his head on for…

So, doctoral judgements aside, I am feeling hopeful.

There has been so much activity on the Kidney Donation side of things…

A number of potential donors are being evaluated at Mount Sinai. One in particular looking very positive… but I really don’t know anything until the final sign-off (we have had 3 or 4 already that have gotten this far in the eval process only to be nixed for one reason or another).

Quick plug: if you are interested in being evaluated as a donor, call 212-659-8024 or go to:

http://mtsinai.donorscreen.org/  and you may need my birthdate, which is 9/28/78

A big piece of news is that a dear friend, Ian Turner, has offered to donate his Kidney to the Matching Program. Ian is not a direct match for me, but by giving to the Matching Program, he is willing to give his kidney to someone else who is in need and this, in turn, speeds up my waiting time, by years. The two kidneys are swapped simultaneously, and, in effect, a second person in kidney failure has their life saved. It’s an incredibly altruistic willingness on Ian’s part.

We are waiting to see if there is a direct match for me among those who are being evaluated now, as the transplant team thinks this would be the fastest route. And frankly, the fastest route is the one I’ll take.

A huge bow of gratitude to everyone who is part of this. Thank you for following my story.