July 28, 2011

First transplant education meeting

I had a series of tests and meetings at NY Presbyterian today. The full battery of PFTs was the bulk of it. And they ran two parts over and over and over... Then a blood gas, of course. I hate those, but the nurse there is really good at it.

My PFTs came back much improved! By 5 percentage points. That may not sound like much when the margin of error is almost that much, but I think this is a real improvement, especially since my last PFTs, just after IVs, were 31% FEV1 done post-albuterol and this series done pre-albuterol. I am at 36% FEV1! I'm thrilled and wonder if returning to cycling has contributed to that, or if I'm just lucky.

The day wrapped up with a transplant patient education meeting in the Millstein building. I was late because the PFTs ran long, but that's OK - the education meeting ran long too!

I'll admit right now my eyes were opened to many things. Some of which are heartening and others dismaying. I knew grapefruit is verboten post-tx, but I had no idea sushi is too. :( And pets. Pets owned before tx can be kept, but somebody else has to deal with the litterbox. And no new pets. But, all in all, given what I'll be able to do versus what I won't; it's still a great deal.

Perhaps what shocked me most was the wide demographic spread of the people in the audience. Black and white, old and young. More white than black, admittedly, and lots more old than young, but still. Quite a cross-section. The patients speaking were all over 50.

I walked in and went into instant germophobe mode and I don't think I'll be able to overcome that. Consciously, I realize that this one group - pre and post tx patients - is probably the *cleanest* group of people, but given the low-volume chorus of coughing, the scattering of masks in the crowd, and the large amount and variety of oxygen tanks like buoys in a grey-haired, wheezing sea - I just about turned and fled.

But reason got the upper hand and I stayed, standing, at the back of the room. I found myself about five feet from someone who I believe had CF. Not unusual as the patients are chiefly a mix of people with COPD, IPF, and CF. The CF crowd was decidedly younger than the rest. There may have been people with other conditions there, too; I don't know. But we're all in the same boat, I suppose.

My dad could have been in that boat. He needed one. And there were post-tx patients there who had been transplanted in their late 60s. I wonder if Dad missed his chance; or if he was even offered that chance. Standing there, I flashed back to that hospital room and was again filled with the frustration I felt then: powerless to do anything and even if I could, it was too late.

I noticed on the sign in sheet that most of the patients were there with their caregivers; but most of them are far more advanced cases than I, too. I will need to go to a meeting or two with Mom, I think, but not a pressing deal. I have a lot to learn at these meetings. But next time, I'm not taking any chances and will wear a mask.

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