For one, the meeting wasn't jam-packed full. There were actually empty chairs! This might have something to do with it being a Wednesday - difficult for people to get away mid-week all the time. Another surprise: I was maybe the only CF patient in the room; there were only two people younger than me and only one of those sounded like she might have CF. A third surprise: There were many caregivers there without their patients. Odd. And many "new" patients - people still going through evaluation.
Even more of a surprise: this meeting began like an actual support group, with the first hour being run by the social worker, Phyllis, and people introducing themselves and briefly telling their stories. I kept waiting for a CF person to stand up, but no-one did. I was last, so had less time, but I made sure to stand up and say a few words. With as many pulmonary fibrosis patients as had just introduced themselves, I really wanted to talk about Dad, but didn't have the time for it.
What I expressed, instead, was how much I'd just learned listening to all of them and how humbling it is to still not be on oxygen. Some of these people were, in the recent past, quite literally at death's door. One woman was in a coma for two and a half months and though the doctors wanted to pull the plug, her daughter would not let them. Now she is out and about with her oxygen and just recently listed. Another man, Willy, was a NY Transit cop for 16 years before his condition forced him into early retirement. Now he works in North Carolina for a homicide division down there. I'll come back to Willy in a bit.
I also expressed that I wanted to make sure the cystic fibrosis corner was heard from. I was, frankly, shocked to see no other CF patients there. Still...I mentioned that CF patients, as a group, tend to have a close knit online support community, mentioned Joanne Schum being 17 years post-tx (!!), and noted that all of our stories will ultimately have the same chapter in the middle somewhere.
The meeting moved on with Dr. Lederer, the other main pulmonologist at the clinic, speaking about statistics, for the most part. I like him a lot and am now thinking about trying to switch to his care. I believe he is Jerry Cahill's doc.
Anyway, he had put together a very clean and organized power point that was used very well - this man can certainly present! Unfortunately, on some slides w/ bar graphs showing average survival rates post-tx among various groups, the only disease he illustrated was cystic fibrosis. This was a bar of its own, alongside bars for over-65, LAS above 60, national averages, and NY Presbyterian averages. Some of the patients were not pleased that CF was called out and the other lung diseases weren't. I began to feel very alone in both my literal and figurative corners.
Well...the meeting went. Good info all around. One supremely annoying woman, a patient, who could not shut her fucking yap. You'd have thought she was at a gospel revival or something.
Now...let me wrap up with Willy because he has possibly come the farthest to be transplanted at NY Presbyterian. He lives in North Carolina!! I asked him, before the meeting, why not Duke or Chapel Hill? Well, it boils down to what he found in his research. He likes the NY Presbyterian numbers better, their success rates, their survival rates. He has heard a couple of bad stories come out of Duke that scared him. I had to concur on the survival stats. NY Presbyterian is one of the best in the nation, if not THE best. When your life is on the line, you bet on the winning horse, not the convenient horse. Fortunately for me (though not for my family), NY Pres is also quite convenient for me. But that ... that is by planning. Way back when I moved here and transplant was just a distant "someday" possibility, I was aware that this was the right area to be in when I'd eventually need it.