Along with my friend, Josh, I did the TD Bank Five Boro Bike Tour on Sunday. The name is quite a mouthful and the ride is quite a ... legful? Well, what I expected to be 40 miles turned out to be 36 or 37, mostly because there was a 4 mile loop the last starting group didn't get to ride.
See, I'd gotten my lottery entry in the blue group, which, had I ridden in that wave, would have started almost two hours before grey and done the entire course. But my friend drew a grey bib, so....we had to ride in grey. As did a large number of blue and red riders also seeking to ride with friends. This means this was the largest wave and was also subject to a number of backups, delays, and outright ride stoppages. One long stop, at 130th street in Harlem, kept us standing around for 45 minutes! I don't need to express how unhappy I am about this. It was bearable because I had company, but this means I won't be entering this event again unless pressured into it by friends or family. Riding traffic-free just wasn't worth the aggravation. And getting home by ferry involved similar delays that just aren't understandable.
But I don't want to leave you with the impression its a bad ride. It is a great ride, generally. The streets are closed off, and well-chosen. There are at least six bridges and only three of them represent any great challenge - and shouldn't be a challenge for any reasonably fit rider. There's good support along the route and a LOT of riding marshalls - you're never very far from a blue vested person. I was disappointed the route didn't take us along Shore Parkway, but that change was apparently due to construction and I can ride that any day.
But my post today is about maximal effort. That point at which you're still going, working hard, but you realize you have no more throttle left to give. I hit that twice on this ride, on the 59th street bridge and on the Verrazano Bridge. Both of these bridges are long and steep, especially the Verrazano, and going up them I was in a very low gear (though I don't think I hit the absolute lowest), and was puffing away as fast as I could get air in and out of my lungs, which isn't as fast as a normal person can. I was thankful the day was cool and mostly cloudy because doing that kind of effort for that long under a hot sun would have been misery. Hell, I would have stopped for rest or walked my bike up.
Actually, I note that a lot of people did exactly that. Many riders simply didn't have the fitness to handle any of the bridges. At least my cardio system can handle the effort, even if my lungs are pushed to their maximum to do it.
I had set up a GoPro to take stills every ten seconds and I stitched it into a video. Unfortunately, the battery died, so while the video gets us into Brooklyn, it ends shortly into it and doesn't capture the epicness of going over the Verrazano. Because of syndication issues with the soundtrack I used, you'll have to click this link and watch it directly at YouTube.
May 7, 2012
An answer or two
My friend Steve posted a note to me online and instead of answer there, I thought I'd turn it into this blog post. Pretty sure he'll read it soon. ;)
Been meaning to thank you for your recent blog posts about your transplant meetings. I find them very helpful and I like your perspective. What are the people like who attend these meetings?. Are most of them wearing oxygen or needing assistance getting around? Do they have labored breathing? I'm not as far along in the process as you are , so was just curious. My eval is tentatively scheduled for July. Its been a struggle just getting a foot in the door because of my diagnosis . Like you I only need O2 when I'm sick , so I'm sure that goes against me.
Thanks for the clap on the back, Steve, but it's no problem putting my thoughts down on e-paper, especially when trying to work these questions out for myself. The sheer *interconnectedness* of everything is mind-boggling. I, the patient, am but a mote in the tornado of people and activity that is The Lung Transplant. Sure, a mote at the epicenter, but a mote nonetheless.
The people at the meetings are quite varied in some ways; frighteningly, hideously, scathingly homozygous in others. The diseases that put our butts in those seats are varied, sure, but it is basically eight or ten conditions, no more. So each patient is in good company with like-stricken individuals. However, it is difficult sometimes to connect with or understand the particular fine points of someone else's disease that you don't share. (Hence, Steve, your ultra-severe asthma, as an outlier, is not only not well understood by the doctors, but also by the pool of patients around you.)
For instance, I understand CF just fine and pulmonary fibrosis well enough. But I don't quite understand interstitial lung disease or sarcoidosis. I understand only that, like me, their lungs are on the burnt side of well-done; not how they got that way. (It's also pretty clear that some patients don't understand their own disease.) Most of the patients are wearing oxygen and about 2/3 need it full time. The other 1/3 are comfortable without it at rest or mild exertion and need it only with activity or sleeping. A handful, like me, don't need oxygen at all yet. But sats aren't the only number that is important. PFTs play a big role in the prompt for evaluation. Some patients who need quite a lot of oxygen have good ability to breathe - their PFTs look good on paper, but their sats are miserable (and killing them). I'm the opposite right now.
But I digress. The chorus of hisses, ticks, beeps, and clicks grows as more people enter the room with their tanks. I personally get very uncomfortable when there's that much of that equipment in the room. I feel like the zombies are attacking. If I stay too long, they'll get me...and then I'll be the one lugging the O2 around.
A stupid reaction, isn't it?
Most of the patients are not struggling for breath when I see them; they're at rest and on enough O2 to be comfortable. Sometimes a patient's coughing fits can be alarming, but those are actually pretty rare. I am sure, though, that on the walk back to the car, or from car to house, there is a struggle for breath. It is probably this lack of struggle that makes me wonder if any of us are really ready to be transplanted. On the other hand, if they transplant when we are struggling for breath every moment of every day, we're likely too weak to survive the procedure. Timing is key.
Steve, I believe what you need to establish is a pattern of degradation. If you can chart your PFTs and oxygenation over time and establish permanent, irreversible decline, the picture becomes clearer for the physicians. Of course, you've probably already done that.
Been meaning to thank you for your recent blog posts about your transplant meetings. I find them very helpful and I like your perspective. What are the people like who attend these meetings?. Are most of them wearing oxygen or needing assistance getting around? Do they have labored breathing? I'm not as far along in the process as you are , so was just curious. My eval is tentatively scheduled for July. Its been a struggle just getting a foot in the door because of my diagnosis . Like you I only need O2 when I'm sick , so I'm sure that goes against me.
Thanks for the clap on the back, Steve, but it's no problem putting my thoughts down on e-paper, especially when trying to work these questions out for myself. The sheer *interconnectedness* of everything is mind-boggling. I, the patient, am but a mote in the tornado of people and activity that is The Lung Transplant. Sure, a mote at the epicenter, but a mote nonetheless.
The people at the meetings are quite varied in some ways; frighteningly, hideously, scathingly homozygous in others. The diseases that put our butts in those seats are varied, sure, but it is basically eight or ten conditions, no more. So each patient is in good company with like-stricken individuals. However, it is difficult sometimes to connect with or understand the particular fine points of someone else's disease that you don't share. (Hence, Steve, your ultra-severe asthma, as an outlier, is not only not well understood by the doctors, but also by the pool of patients around you.)
For instance, I understand CF just fine and pulmonary fibrosis well enough. But I don't quite understand interstitial lung disease or sarcoidosis. I understand only that, like me, their lungs are on the burnt side of well-done; not how they got that way. (It's also pretty clear that some patients don't understand their own disease.) Most of the patients are wearing oxygen and about 2/3 need it full time. The other 1/3 are comfortable without it at rest or mild exertion and need it only with activity or sleeping. A handful, like me, don't need oxygen at all yet. But sats aren't the only number that is important. PFTs play a big role in the prompt for evaluation. Some patients who need quite a lot of oxygen have good ability to breathe - their PFTs look good on paper, but their sats are miserable (and killing them). I'm the opposite right now.
But I digress. The chorus of hisses, ticks, beeps, and clicks grows as more people enter the room with their tanks. I personally get very uncomfortable when there's that much of that equipment in the room. I feel like the zombies are attacking. If I stay too long, they'll get me...and then I'll be the one lugging the O2 around.
A stupid reaction, isn't it?
Most of the patients are not struggling for breath when I see them; they're at rest and on enough O2 to be comfortable. Sometimes a patient's coughing fits can be alarming, but those are actually pretty rare. I am sure, though, that on the walk back to the car, or from car to house, there is a struggle for breath. It is probably this lack of struggle that makes me wonder if any of us are really ready to be transplanted. On the other hand, if they transplant when we are struggling for breath every moment of every day, we're likely too weak to survive the procedure. Timing is key.
Steve, I believe what you need to establish is a pattern of degradation. If you can chart your PFTs and oxygenation over time and establish permanent, irreversible decline, the picture becomes clearer for the physicians. Of course, you've probably already done that.
May 4, 2012
Why non-compliance?
I know we all have days where we can't do what we should do. Maybe it's lack of personal motivation that makes us skip working out or clean the house. Maybe it's fear of side effects that makes us skip medication, or that we're just so tired of being sick and skipping a Vest treatment makes us feel like a normal person for a moment. I admit I've fallen prey to those traps now and then.
My friends and doctors know me as a compliant patient. Sure, I'm not perfect. Treatments do get missed because I get busy, mainly. As a matter of fact, I just realized this morning that it's May already! I'd completely forgotten to switch to Cayston (which I'll do tonight - gotta get out the stool to get down the Altera from the top shelf) and to start new insulin pens. So, in this case, my non-compliance to the usual orders was just due to plain old forgetfulness.
But some non-compliance can't be blamed on forgetfulness or a busy schedule or just needing "a day off". Some of it is directly attributable to fear. I talked to a woman briefly after the last transplant meeting who said her 16-yo w/ CF has been evaluated for transplant, but is not coming to the patient meetings. He says he feels like he doesn't need to, yet. I kind of get that, being myself one of the patients all the other patients look at and think "you're not on oxygen, you don't need a transplant". There's a pressure there as someone who's not in the O2-carrying crowd. But this kid is just acting out on his fear. The fact is that he WILL need a transplant someday and if he's already been referred and evaluated, then that day is within the next couple/few years. And he needs to attend those meetings now, or they won't list him.
How do I know that? How can I be sure that a patient who is non-compliant regarding attending educational meetings won't be listed? Because one of the women I've seen at two of the meetings now was denied for that very reason! She got sicker and sicker, the doctors met and then told her that while she does indeed need to be put on the list, they can't do it because her non-attendance is evidence of her non-compliance. If she won't listen to doctor's orders about something as simple as going to some seminars, what else won't she listen to? So now she's attending the meetings. I'd say "good for her", but really....how can someone be so stupid in the first place?
Dr Lederer touched on non-compliance very briefly and I asked him how many patients become non-compliant after transplant. (After all, being transplanted is a whole new condition to manage.) My thought was that some patients will fall into the trap of "I feel so great now, why am I taking all these pills? Maybe I can skip this doctor appointment?" etc. He said perhaps 5%. To me, that number is shockingly high, but perhaps that really represents a 95% compliance rate, which in the medical community is also shockingly high. Lederer blamed post-tx non-compliance as one of the reasons for post-tx rejection complications.
I guess my question is: why don't post-tx patients stay compliant 100% of the time? Why do some fall off the wagon? Is it for the same reasons we fall off the wagon before transplant? Or a different slew of reasons altogether?
My friends and doctors know me as a compliant patient. Sure, I'm not perfect. Treatments do get missed because I get busy, mainly. As a matter of fact, I just realized this morning that it's May already! I'd completely forgotten to switch to Cayston (which I'll do tonight - gotta get out the stool to get down the Altera from the top shelf) and to start new insulin pens. So, in this case, my non-compliance to the usual orders was just due to plain old forgetfulness.
But some non-compliance can't be blamed on forgetfulness or a busy schedule or just needing "a day off". Some of it is directly attributable to fear. I talked to a woman briefly after the last transplant meeting who said her 16-yo w/ CF has been evaluated for transplant, but is not coming to the patient meetings. He says he feels like he doesn't need to, yet. I kind of get that, being myself one of the patients all the other patients look at and think "you're not on oxygen, you don't need a transplant". There's a pressure there as someone who's not in the O2-carrying crowd. But this kid is just acting out on his fear. The fact is that he WILL need a transplant someday and if he's already been referred and evaluated, then that day is within the next couple/few years. And he needs to attend those meetings now, or they won't list him.
How do I know that? How can I be sure that a patient who is non-compliant regarding attending educational meetings won't be listed? Because one of the women I've seen at two of the meetings now was denied for that very reason! She got sicker and sicker, the doctors met and then told her that while she does indeed need to be put on the list, they can't do it because her non-attendance is evidence of her non-compliance. If she won't listen to doctor's orders about something as simple as going to some seminars, what else won't she listen to? So now she's attending the meetings. I'd say "good for her", but really....how can someone be so stupid in the first place?
Dr Lederer touched on non-compliance very briefly and I asked him how many patients become non-compliant after transplant. (After all, being transplanted is a whole new condition to manage.) My thought was that some patients will fall into the trap of "I feel so great now, why am I taking all these pills? Maybe I can skip this doctor appointment?" etc. He said perhaps 5%. To me, that number is shockingly high, but perhaps that really represents a 95% compliance rate, which in the medical community is also shockingly high. Lederer blamed post-tx non-compliance as one of the reasons for post-tx rejection complications.
I guess my question is: why don't post-tx patients stay compliant 100% of the time? Why do some fall off the wagon? Is it for the same reasons we fall off the wagon before transplant? Or a different slew of reasons altogether?
May 2, 2012
Just when I think I've got it all figured out
Another transplant meeting today. I thought I had these figured out, but was thrown a couple of curve balls this afternoon.
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.
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.
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