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February 18, 2011
January 1, 2011
Midnight Run
Well, not much going on in my athletic life. Health is so-so. Feeling pretty good the last few days, so when I got a New Year's Eve invite from fellow runner and Pheddip listener, Marci, to run the Midnight Run with her and her friends, I took her up on it. Not that I had a prayer of running WITH them, but we spent a couple hours together beforehand and a little bit of recovery time after. Marci lives on 58th, very close to Central Park, very convenient for running meetups.
So after some of the usual pre-run BSing and worries and watching Marci squeeze on her Vibrams, we got going about an hour before the run. We needed at least half that to get to the Bandshell, where the party was, as many routes were blocked off by the popo. (The warm weather brought everyone out to Times Square, which on New Year's Eve sort of extends itself outward. Nuts.)
The Emerald Nuts Midnight Run is a great tradition, with runners dressing in costumes for a contest or just come as you are. I've done this run at least once before and volunteered at the mid-point "champagne" station two years ago, when it was in the teens. My impression at those times was that the run draws about 3-4,000 runners, max.
This year, however, there were a lot more. A LOT more! I'd guess at 7,000 or more, at least and perhaps one bandit for every registered runner. Things have advanced, certainly. They had the lead truck out for this and elites were warming up in a protected sprint area. This is moving beyond "fun run".
The start was amazing. There were no corrals, so we just squeezed in where we could. Midnight came quickly and the fireworks started. The fireworks lasted a LONG time - at least 20 minutes. I was a mile and a half into the run before they stopped. Or, rather, paused, because they started again as I was about a half-mile from the finish. Very nice!
As we started, I told the others to have a good run and just did this at my own pace. They were planning 10-minute miles, and I was planning perhaps 12s. The results are somewhat slower:
The first mile was pretty slow at 13:30, but I didn't walk at all until half a mile into it, when I was well up Cat Hill, even well past the bobcat statue! Perhaps the slow, crowded start gave me that energy. (Or perhaps it was the nasty caffeinated strawberry-banana Gu I took a half hour before.) The second mile was flatter and I walked only twice, for very brief periods, and turned in a 12:15. One of those walks was to slug down a few swallows of non-alcoholic champagne. I might have passed that, but the entire pack slowed to a walk there. So, whatever.
Mile three was a lot of hills and a fair bit of walking, resulting in 13:29 for that mile. Considering how tired I was getting, not terrible, but not great. However, the fourth mile was a real winner, as it's on the long downhill towards the 72nd street crossover. No walking (much to my surprise) and a bit of a push toward the finish, resulting in a sub-12 mile.
I wrapped up the evening with the mile-long hike back to Marci's and some hot cider. Headed home shortly after, knowing the train would be local and take 90 minutes or so.
Want to thank Marci for being a good host and turning my New Year's into a very memorable one!
So after some of the usual pre-run BSing and worries and watching Marci squeeze on her Vibrams, we got going about an hour before the run. We needed at least half that to get to the Bandshell, where the party was, as many routes were blocked off by the popo. (The warm weather brought everyone out to Times Square, which on New Year's Eve sort of extends itself outward. Nuts.)
The Emerald Nuts Midnight Run is a great tradition, with runners dressing in costumes for a contest or just come as you are. I've done this run at least once before and volunteered at the mid-point "champagne" station two years ago, when it was in the teens. My impression at those times was that the run draws about 3-4,000 runners, max.
This year, however, there were a lot more. A LOT more! I'd guess at 7,000 or more, at least and perhaps one bandit for every registered runner. Things have advanced, certainly. They had the lead truck out for this and elites were warming up in a protected sprint area. This is moving beyond "fun run".
The start was amazing. There were no corrals, so we just squeezed in where we could. Midnight came quickly and the fireworks started. The fireworks lasted a LONG time - at least 20 minutes. I was a mile and a half into the run before they stopped. Or, rather, paused, because they started again as I was about a half-mile from the finish. Very nice!
As we started, I told the others to have a good run and just did this at my own pace. They were planning 10-minute miles, and I was planning perhaps 12s. The results are somewhat slower:
The first mile was pretty slow at 13:30, but I didn't walk at all until half a mile into it, when I was well up Cat Hill, even well past the bobcat statue! Perhaps the slow, crowded start gave me that energy. (Or perhaps it was the nasty caffeinated strawberry-banana Gu I took a half hour before.) The second mile was flatter and I walked only twice, for very brief periods, and turned in a 12:15. One of those walks was to slug down a few swallows of non-alcoholic champagne. I might have passed that, but the entire pack slowed to a walk there. So, whatever.
Mile three was a lot of hills and a fair bit of walking, resulting in 13:29 for that mile. Considering how tired I was getting, not terrible, but not great. However, the fourth mile was a real winner, as it's on the long downhill towards the 72nd street crossover. No walking (much to my surprise) and a bit of a push toward the finish, resulting in a sub-12 mile.
I wrapped up the evening with the mile-long hike back to Marci's and some hot cider. Headed home shortly after, knowing the train would be local and take 90 minutes or so.
Want to thank Marci for being a good host and turning my New Year's into a very memorable one!
December 18, 2010
Something's wrong
What else is new, right? Seems like something's always going wrong, but this time it isn't anything external, nor anything painful. It's just that lately I feel like I do when I'm on prednisone. Wild mood swings; weeping at the stupidest little things, good and bad. My diabetes is back to its normal course. The early-winter honeymoon is over. Can it be a chemical imbalance? I don't think I'm depressed - this month has been a little better than last month, and last month better than the one before. In fact, if none of my friends die before New Years, I'll be able to conclude that the Dark Year was pretty much November 2009 to October 2010.
December 5, 2010
Transition, transition
I think I've written it before that this is turning out to be a year of transition, and as time passes that is more and more true.
It's been three months since Dad passed away and it is starting to really feel like he's gone. But then I look at Facebook and Mom's posts or comments and there's Dad's face staring back at me from her profile picture. It's a good picture, but it's starting to be disturbing.
The downstairs renovation is being done mostly on the loan, as planned, but there are some overages and extras that I didn't plan for. These are not major - actually, far less than the 15-25% that homeowner's websites say to budget for such expenses - but it's enough that I'm greatly annoyed. Why the hell did I spend 10 months with the architect and her drawings if it wasn't to avoid hiccups like these? (As of now, we're waiting for the city to send a plumbing inspector - once that is done, the entire downstairs can be buttoned up. But until then, the bathroom is little more than exposed plumbing, electrical, and studs.)
So on to upstairs. My gift to myself from Dad's life insurance is a moderate renovation up there, starting with pre-finished oak hardwood floors. (I really can't stand engineered wood floors, even though I was forced into it in the basement, since I couldn't lose the extra 1/2" of height down there.) In addition, I'm having the contractor redo the bathroom ceiling to let the sunshine in. And the walls and ceilings throughout the apartment are getting puttied, sanded, and painted; and I'm putting in a new kitchen. I wouldn't have done the kitchen at all except that the oven is on its last legs, the cabinets have mildew and are falling apart (due to the last tenant, stupid motherfucker), and the current layout is awful.
So. Year of transitions. Dad passes away; both my apartments are getting renovated (a horribly disruptive process by the way); I'm moving upstairs; AND...
I sold Roxie. I've written about my concerns here before that with the cough syncope that has happened four times now (maybe five), that I may get myself killed if it happens while on the motorcycle. In contrast to the other risks of motorcycling, this is one that I can't manage or mitigate. I can't prevent syncope. So...when I was given a good enough offer, I took it. I'm currently slowly selling off all extraneous motorcycle parts and tools. In fact, I'm selling and freecycling a LOT of posessions, so that I won't have to move them upstairs. Anybody need a green sparkly Hello Kitty TV?? :)
There's still biking in my future. I'll get back to it full-time someday and in the meantime consider one or two weeks on a borrowed or rented machine on the road with friends to be worth the risk.
Courses of IVs are getting more numerous. I'm on them again right now - it's only been two months since my last course. But because of the immunizations from two weeks ago, I ended up getting sick and needing antibiotics again. Only this time, it's being done through a Port! Finally! I had to twist some arms, but I got my port put in on Thursday, and I started IVs Saturday morning. This is a new way of doing things, but at least no more PICC lines. I may write up a whole post about the getting the port. We'll see.
Finally, there's another huge transition in my life: I've been referred for lung transplantation at Columbia. This is something I've been writing about in blog posts I haven't published. You see, I hadn't told my family 'til Thanksgiving. I planned on waiting until the night before my flight out, but the perfect opportunity came up the Wednesday night before Turkey Day, as we all sat around the kitchen table and talked about Dad and read some of the sympathy cards. I told everyone to stay put, that I had something I wanted to talk to them about. Then I went and got the big packet of info that the transplant center had given me and gave it to Mom to read. I told the family my status, that I'm in the initial rounds of tests, immunizations, and the like, and that transplant itself - even being listed for it - is likely many years off, still. But this IS a change - what has always been theoretical for my family has now become an impending reality.
My thing is, once listed, I will have to have a caretaker living with me. So I'm cranking up my search for a mate another notch. :)
However, at the moment, the best caretaker option is probably going to be Mom. But I want her to have the utmost in freedom and to live her own life for as long as possible before having to return to the role of caretaker. She did that long enough for Dad. I recall vividly that moment right after the Bridge Run when we were having brunch and I cracked a joke and for a moment she was absolutely transformed. She was genuinely laughing and her smile reached her eyes and she looked about 40 years younger. That's the Karen that I want to help reach the surface and nourish for as long as possible. The Karen that is in the photos next to dad is a wise and responsible face, but not a happy one. So it's one I hope to keep in a box for a long time yet.
To end this post, a quick congrats to my sister Rachel, who finished the Las Vegas half marathon today in about 2:07. I don't know the exact time because a) their athlete tracking system failed spectacularly; and b) the results aren't up on the webpage yet, which just screams incompetence. (NYRR race results are up within a couple hours of the race.)
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.
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.
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