October 29, 2010

First meeting with lung tx team

Several weeks ago, when I was in the grip of an exacerbation, my FEV1 dropped to less than 25%. Dr. DiMango commented that it was time to get meet the lung transplant team. Not that I'd need a transplant right away, but it's better to get to know them and do the tests sooner rather than later. OK.

So IVs came and went, as noted in my blog, and it's been another couple of weeks. My last couple of runs have gone quite well, much to my surprise. But looming on the horizon has always been this date: October 29th. The day I'll first meet the transplant team. A couple weeks back, the coordinator sent me a whole package of paperwork to fill out and pamphlets to read. Interesting and useful, all of it. I didn't have a lot of questions left after reading it all. And I know what questions I do have can be answered in two ways: I can call the coordinating nurse, or I can go online and ask my friends who have already started this process. (Philosophically, there's no "finish" to lung transplant. Post-operation, there's life-long maintenance and evaluation, of course.)

So I had a 10 a.m. appointment, which I managed to be late to because MTA stranded my ass on a platform for 45 minutes, then sent the D local. :( FUCKING MTA! The people at the transplant center didn't seem too perturbed.

For some reasons, I thought I'd be meeting all of them at once, but instead I met them one at a time.

The coordinating nurse, Carmen Saunders, is really quite nice and exudes an aura of calm competence. I liked her right away. She did a lot of explaining of the main plot line, so to speak, while gathering an updated medical history. She seemed pleased that most of my info is already in the system since I'm seen at the Columbia CF center; and she wasn't alone in that opinion. Anyway - great gal, coming out of the now-gone St. Vincents where she was a nurse on various wards, even ER for a little bit, but especially the endoscopy suite - so she KNOWS what the tests are like. She and I exchanged paperwork (rather little more than my name and basic info, at this point), and then went to fetch the doctor.

Dr. Selim Arcasoy is now my pulmonologist for transplant and from this point forward will coordinate with Dr. DiMango. Post-tx, he'll be my main pulmo and DiMango will take care of the rest of my CF. I also like Dr. Arcasoy a lot. We had a good conversation and he seemed content with my current state of health. He listened to my lungs and felt my legs (diabetes check?).

Both he and Carmen confirmed my assumption that while I'll be in the program and on their radar, I probably won't be listed for transplant at this time. Not unexpected. I'm not yet sick enough.

The next visit was from Dr. Frank D'Ovido, the surgeon. He was less personable. Kind of mumbled through some boilerplate stuff, all of which I'd heard befoe, but it's good to hear from the surgeon. He did surprise me by saying that the operation itself is the least difficult part of the transplant experience. He stressed the importance of good exercise, nutrition, and fitness in the coming months and years before transplant, as basically the healthier I am, the better I'll do after the operation. I'll heal faster, bounce back faster, and be less susceptible to complications. His visit was quick.

While waiting for whoever was next, I got a drop-in from a doctor I'd seen in the past: Dr. Lori Shah. I knew she'd gone to Columbia, but didn't know she'd joined the transplant staff. It's probably best that she's not my pulmonologist - I actually think I prefer Dr. Arcasoy. But it was nice to see her again. She looks so young!

Finally, my last meeting was with the financial counselor, Beatriz Badillo. This was very short. She'd called Tricare (I'm not sure how long ago) and gotten the skinny on what's covered, what's not, and what copays I can expect for tests, procedures, and medications. She was, let's say, pleasantly surprised. Me too, actually. I'm covered to the same, regular deductibles and copays as all my other CF stuff. After running through the numbers, she said she has only once or twice seen such good coverage. I have to believe it. I am... a bit overwhelmed at my good fortune.

Or perhaps not just good fortune. I really, truly, have my father to thank and the more I need my health insurance and the more it's there for me, the more I realize what a tremendous gift my dad gave me. Now, I am still waiting for the other shoe to drop and for Tricare to call and say "you're not in our system anymore," but I have assurances from various quarters that that won't happen. I hope not; at least not before transplant! I mean...I think about the overall cost of a transplant and the care leading up to and after it... Did Dad know during his 20 years of service that he was effectively banking two to three times his pay in future saved healthcare costs for his son? If this were the sum total of my inheritance, I'd be a wealthy man! Thanks, Dad.

So, anyway, got out of the clinic after about five hours and immediately went to take care of the myriad bloodwork that needs to be brought up to date. Fifteen vials. That breaks my old record by six! My one mistake, at this point, was to take a picture of the vials and post them on Facebook. Mom commented it looks like a transplant evaluation! But I haven't told Mom yet that the T-word has come up. 'Til now, it's all been a hypothetical. I mean, a definite "going to happen someday", but now shit's gettin' real. So I want to have a sit-down with her and Rachel at Thanksgiving and let them know I've transitioned into the first stages of the transplant process, that things could take awhile, but that sacrifices will be asked of all of us. Unfortunately, more from Mom. Not financial, but personal. She just got done taking care of a terminally ill patient and now she's going to be saddled (within - best guest - two-three years) with another. The tx center requires social support; they require caregivers. Not just one, but two. One more-or-less full-time in the last stages pre-tx and immediately post, as one might expect, but also a second person in town who can contribute support and act as a backup to the primary caregiver. I asked if a close friend would be OK, instead of prevailing upon my siblings to make a sacrifice, and they said it is. I have a couple of people in mind I want to approach about getting on board my care team, but I need to know more about the extent of their role. This would all be so much easier if I had a live-in gf or spouse.

I'll wrap this up by saying that the survival rates are not good. Not as good as for other organs, at any rate. Hell, I'm surprised lung tx works at all. They are proud of their one-year survival rate for CF, which tends to be higher than for other people needing lung tx (but which can be explained by the younger demographic), is 90%. This drops as time goes on, of course, to about 60% at 5 years out and 25% at 10 years out. Scary stuff. Of course, the alternative is 100% certain.

No comments: