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.
October 29, 2010
October 25, 2010
Off the IVs, off the prednisone; UGH
Prednisone gives me such energy and makes me feel so good. I can breathe, I can run, I can get around without pain in the joints... so why do I have to go off it? I'm back to hurting, needing painkillers, walking more than jogging, no energy to speak of, etc. Ugh. I should call my doctor. I need to anyhow, so I can get a port scheduled.
In other thoughts...
I've been trying out the GUS flavors and now there's a contender in the low-sugar, for-grown-ups soda category: Bionade.
The elderberry and lychee flavors are quite good. The ginger-orange, not so much. In fact, it's pretty bad. I haven't tried the herbs flavor yet. I'd have to say both the elderberry and lychee are unique.
By contrast, the GUS sodas come in a standard assortment of flavors plus a few interesting ones (pomegranite), but I think are still superior, especially the Dry Meyer Lemon and Dry Valencia Orange. I have purchased one of the Extra Dry Ginger Ale to try.
In other thoughts...
I've been trying out the GUS flavors and now there's a contender in the low-sugar, for-grown-ups soda category: Bionade.
The elderberry and lychee flavors are quite good. The ginger-orange, not so much. In fact, it's pretty bad. I haven't tried the herbs flavor yet. I'd have to say both the elderberry and lychee are unique.
By contrast, the GUS sodas come in a standard assortment of flavors plus a few interesting ones (pomegranite), but I think are still superior, especially the Dry Meyer Lemon and Dry Valencia Orange. I have purchased one of the Extra Dry Ginger Ale to try.
October 10, 2010
Staten Island Half Marathon 2010 race report
Haven't been blogging too much lately, have I? It's lost its appeal, really; feels like all I want to do here is bitch about how life sucks. My thoughts these last three weeks have been fairly dark and I'm trying not to bring that here. Before I get to the race report, a quick update on other parts of my life:
1) Running - not too hot. Got a 10-miler done 3 weeks ago that I almost cut short, but perservered and overall it wasn't bad. I was happy enough with that one. But since then, nada. One or two very short runs and that's it. Hell of a taper, eh?
2) Motorcycling - if all turns out as planned, I'll be selling Roxie tomorrow morning for just about what I could get for her if I sold via ebay motors. Selling as-is and they buyer knows he'll have to put some coin into her to get her ready for functional city riding. I'm grieved about this, but have my reasons. It is time to let her go, as my riding needs and wants have changed. I'll keep an eye out for my next bike, as with prices depressed right now, the money I'm getting for Roxie would be a great downpayment. I am, for the record, looking more at Ultras than anything else.
3) Grieving for dad - it comes and goes. Dad never lived HERE, so life seems pretty normal day-to-day, but sometimes it just hits hard. Like at the end of today's race, for instance. I know Dad would have been so proud that I finished it at all.
4) Health - I'm on IVs and am in week 3. Will probably have to do a week 4 as I've somehow contracted a cold on top of things. Friday's PFTs are promising, but it is taking more and more albuterol just to let me breath. The PICC placement this time was awful. I didn't feel much pain, of course, because lidocaine (or whatever the hell they use) is a wonderful thing. But after four failed attempts in my left arm, they had to move to the right and that should have been like buttah, but instead had its own problems. I'm not waiting on a port anymore. As soon as I'm off the PICC, I'm getting my doc to schedule a port procedure.
5) Work - back to teaching, getting some small jobs here and there. Picking up. I hope its a real trend and not just a burp in the steady stream of nothingness.
6) Renovation: ongoing. I actually like my contractor and his crews. I feel like I've made the right decision with him and that the money spent on this is well invested.
So. How did the Staten Island Half Marathon of 2010 go for me? Well, I'm not only on IVs for lung infection, but I also have a cold; I nearly skipped this. But I've done it every year since 2005, so I didn't want to miss it. I'm glad I got out there. But between the poor last three weeks of training and muscles cramping up due to salt loss, it got pretty hairy in the last three miles. I was running pretty consistent 12:30 miles through mile 7. Mile 8 has the big hill, so was a lot slower, but I expected that. Mile 9 and 10 were back to 12:30 or thereabout. But 11 through 13 were difficult and slow. I'd aimed for a 2:45 overall, just based on being untrained, and almost hit that mark, with an official time of 2:46:52. The weird thing is, this is one second faster than last year's race! All of the other data are similar, too, including splits, temperature, humidity, weather, my place in the pack by percent, and my Age Graded percentage. Creepy.
Some observations;
I have no problem striking up a conversation with people, but I fail to ask their names. Too bad; at least one of the ladies I chatted with before the race was single. Another lady had just had her first child in April and this was her very first race. :) I'm sure she did well, as she runs 8:15 miles in practice.
Knowing the route helped keep it from being insurmountably long. No wrong turns this time. I could expect certain landmarks and knew the rough distances between them. The flat out-and-back portion wasn't nearly as long as I remember (miles 5.5 through 7.5). The big hill was.
Kudos to the city for resurfacing the streets! Almost the entire route was on freshly laid asphalt and my knees, ankles, and hips appreciate it!
Fantastic volunteer support - plenty of water tables (more than usual, I think) and plenty of portapotty stations.
And kudos to NYRR for finally ordering enough fucking bagels! For the first time in at least the last three years, I actually got a bagel and an apple. I know that should be no big deal, but when you are as far at the back of the pack as I am, it's depressing enough that they're rolling up the finish line before you arrive, but to find that the order or rationing of the bagels wasn't enough to supply the back of the pack with the end of race food and Gatorade that everyone else enjoys is just aggravating. But this time was different. I am grateful!
I took a year off from running to attempt to reboot, but I'm exactly where I was. EXACTLY. And I drew so little joy from today's run. I'm thinking about shelving any racing longer than 10K altogether. Finishing used to be its own reward when it was my first few big runs; but after 21 half marathons, that really doesn't apply anymore. I am so tired of fighting my lungs for control of my running. I am tired of ending up with hands on knees, coughing my lungs out, every 10 minutes or so. I'm tired of drawing concerned attention from volunteers, medical personnel, cops, and other runners. I don't know what I'm going to do from here.
1) Running - not too hot. Got a 10-miler done 3 weeks ago that I almost cut short, but perservered and overall it wasn't bad. I was happy enough with that one. But since then, nada. One or two very short runs and that's it. Hell of a taper, eh?
2) Motorcycling - if all turns out as planned, I'll be selling Roxie tomorrow morning for just about what I could get for her if I sold via ebay motors. Selling as-is and they buyer knows he'll have to put some coin into her to get her ready for functional city riding. I'm grieved about this, but have my reasons. It is time to let her go, as my riding needs and wants have changed. I'll keep an eye out for my next bike, as with prices depressed right now, the money I'm getting for Roxie would be a great downpayment. I am, for the record, looking more at Ultras than anything else.
3) Grieving for dad - it comes and goes. Dad never lived HERE, so life seems pretty normal day-to-day, but sometimes it just hits hard. Like at the end of today's race, for instance. I know Dad would have been so proud that I finished it at all.
4) Health - I'm on IVs and am in week 3. Will probably have to do a week 4 as I've somehow contracted a cold on top of things. Friday's PFTs are promising, but it is taking more and more albuterol just to let me breath. The PICC placement this time was awful. I didn't feel much pain, of course, because lidocaine (or whatever the hell they use) is a wonderful thing. But after four failed attempts in my left arm, they had to move to the right and that should have been like buttah, but instead had its own problems. I'm not waiting on a port anymore. As soon as I'm off the PICC, I'm getting my doc to schedule a port procedure.
5) Work - back to teaching, getting some small jobs here and there. Picking up. I hope its a real trend and not just a burp in the steady stream of nothingness.
6) Renovation: ongoing. I actually like my contractor and his crews. I feel like I've made the right decision with him and that the money spent on this is well invested.
So. How did the Staten Island Half Marathon of 2010 go for me? Well, I'm not only on IVs for lung infection, but I also have a cold; I nearly skipped this. But I've done it every year since 2005, so I didn't want to miss it. I'm glad I got out there. But between the poor last three weeks of training and muscles cramping up due to salt loss, it got pretty hairy in the last three miles. I was running pretty consistent 12:30 miles through mile 7. Mile 8 has the big hill, so was a lot slower, but I expected that. Mile 9 and 10 were back to 12:30 or thereabout. But 11 through 13 were difficult and slow. I'd aimed for a 2:45 overall, just based on being untrained, and almost hit that mark, with an official time of 2:46:52. The weird thing is, this is one second faster than last year's race! All of the other data are similar, too, including splits, temperature, humidity, weather, my place in the pack by percent, and my Age Graded percentage. Creepy.
Some observations;
I have no problem striking up a conversation with people, but I fail to ask their names. Too bad; at least one of the ladies I chatted with before the race was single. Another lady had just had her first child in April and this was her very first race. :) I'm sure she did well, as she runs 8:15 miles in practice.
Knowing the route helped keep it from being insurmountably long. No wrong turns this time. I could expect certain landmarks and knew the rough distances between them. The flat out-and-back portion wasn't nearly as long as I remember (miles 5.5 through 7.5). The big hill was.
Kudos to the city for resurfacing the streets! Almost the entire route was on freshly laid asphalt and my knees, ankles, and hips appreciate it!
Fantastic volunteer support - plenty of water tables (more than usual, I think) and plenty of portapotty stations.
And kudos to NYRR for finally ordering enough fucking bagels! For the first time in at least the last three years, I actually got a bagel and an apple. I know that should be no big deal, but when you are as far at the back of the pack as I am, it's depressing enough that they're rolling up the finish line before you arrive, but to find that the order or rationing of the bagels wasn't enough to supply the back of the pack with the end of race food and Gatorade that everyone else enjoys is just aggravating. But this time was different. I am grateful!
I took a year off from running to attempt to reboot, but I'm exactly where I was. EXACTLY. And I drew so little joy from today's run. I'm thinking about shelving any racing longer than 10K altogether. Finishing used to be its own reward when it was my first few big runs; but after 21 half marathons, that really doesn't apply anymore. I am so tired of fighting my lungs for control of my running. I am tired of ending up with hands on knees, coughing my lungs out, every 10 minutes or so. I'm tired of drawing concerned attention from volunteers, medical personnel, cops, and other runners. I don't know what I'm going to do from here.
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