fett on 8/7/2010 at 17:13

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Just returned from the transplant center at St. Louis. I scored very well on the V02 test (this is the benchmark test to evaluate someone for heart transplant) - at least for a patient in heart failure. This means that I'm not in enough present danger to be listed yet. In the meantime, I have to keep the rest of myself in good shape (no more meth, no more unprotected sex with MrDuck), and my assessment tests up to date so if I go downhill quickly, it will only take 4-6 weeks to get listed. The V02 projects that my heart could last another 5-10 years before I need transplant. Which is awesome when you consider that after a transplant, you only survive 10-15 years at best. This hopefully means I'll live long enough to see my boys into adulthood, and possibly parenthood.

We were seriously looking into moving to either St. Louis or Boston for transplant, but since I'm not as urgent as might be expected, we're going to stay NW Arkansas while Christie finishes her BSN. We also hooked up with a free Med-Vac service that can get me to St. Louis in a little over an hour, in case anything crazy happens. My St. Louis doctor (Dr. Joseph) knows my Boston doctor (Dr.Maron) and they are working together to manage my symptoms with medication in the meantime, which is fairly complicated. I'm confident I'm in good hands between the two of them. Dr. Joseph is not an HCM doctor - she's a transplant doctor/surgeon but has lots of experience with diastolic heart failure and is very plugged into the HCM community. We laughed a lot yesterday because she kept saying, "Now I've never told another patient to do this, but you need to___________________." When she was explaining to Christie how to help regulate my meds she kept warning us that I would not react to them like the patients Christie is used to as a cardiac nurse. All of that makes me feel like she has a really good grasp on how bizarre my combination of issues has become. She said that I make a "fascinating physiological study." Glad to amuse you ma'am.

I've been told I'll have to re-adjust my expectations of what I can do, since my energy and oxygen is severely diminished from a year ago. She told me to stay as active as possible and was very specific about what activities I can and can't do, what to watch for with my blood pressure. All doctors are also in agreement that the progression of the disease has paused for now, but there's no way to accurately assess when it might progress again. 5-10 years as per the V02 test is only the best projection available at the moment, but we are "cautiously optimistic," because the way my disease has progressed so far is only seen in 1-2% of HCM cases.

Thanks for all your encouragement, support, and prayers. Now let's resume the important task of Rocking and/or Rolling. I love you TTLG. You guys are fucking awesome.

Ostriig on 8/7/2010 at 17:37

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That's some great news dude, glad things are looking up for you! Keep at it and best of luck still ahead!

june gloom on 8/7/2010 at 18:00

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Great to hear, fett!

rachel on 8/7/2010 at 18:16

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Great :) Best of luck man!

Rug Burn Junky on 8/7/2010 at 18:25

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I look forward to hearing the results of your V05 test.

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