Post-transplant day 300. Catching the bus.
Yesterday, on my two hundred ninety ninth day after my transplant, I went on my longest run in several months - a mere 2.25 miles. My legs were jelly after a mile and a half and my blood sugar was running low - a problem I have a lot these days. Once again, it came back to me that recovering fully from such a surgery takes far longer than I'd anticipated, and I guess I'm a bit older than I was last time I trained for a race. I turned off RunKeeper, sat down for a bit, and walked the rest of the way home.
My route took me past several bus stops. Some of them had whole families waiting there and it was clear they'd been waiting quite some time. I got to thinking about those bus stops and the families.... just waiting. There is little doubt the bus will eventually come, but perhaps some will give up and find another way to go where they're going. Perhaps some will just give up and just stay home. Or maybe the bus really isn't coming. It felt uncomfortably familiar.
It seems to me that the road to transplant is very much like waiting for a bus, but a bus for which you have no reliable schedule and you can't actually be sure it will come at all. If it does, it can carry you on, possibly for a long, long time. Nobody knows what distance your ticket is worth. For me, I had to fully switch buslines! Some of my friends nearly missed their bus. Others, like Heather James, are still waiting and no one has any idea when her bus will come.
And still others won't be getting on the bus at all. For one reason or another, the bus doesn't stop at their stop, or worse yet doesn't open its doors. Getting confused by this metaphor? Sorry. What I am saying is that for some people transplant is not an option. I suppose for a few that's by choice, but for almost every person who has been denied this life-saving treatment, it is mostly the doctors making this choice for them.
Friend Kenna Taylor is one of them. I don't know the exact reasons why doctors have turned her down, but at a mere 17 years old, she has been sent home on hospice care - sent home to die. And as of right now, she's back in the ICU. I believe they will make her comfortable, but the stop for transplant is not on her ticket. And I am emotionally panicked. I just want to grab the driver or the conductor by the lapels and scream at them - WHY AREN'T YOU STOPPING FOR HER??
Who are these men and women who make the life and death calls? What gives these mysterious conductors of the night the right to refuse to punch your ticket? Oh, sure - years of schooling and experience; yeah I get it. Nobody else is qualified to determine whether a candidate is a good transplant risk or not.
But here's the deal: the system is rotten. It doesn't reward hospitals for number of lives saved, but rather penalizes them should there be too many patient deaths. It penalizes by dropping their rankings in nationally published lists. For instance, Duke is the nation's top transplant center, according to US News and World Report. The system further penalizes, if it has to, by pulling the hospital's certification as a transplant center. And so hospitals shy away from patients culturing B Cepacia, or who have multiple organ problems, or anything else that cause the pulmonologists or surgeons to believe the patient won't survive. My friend Kyle O'Neil was a B. Cepacia patient. By the time he found a center that would take him, he was way too sick and simply didn't survive the wait for lungs. He passed away a little more than a year ago. The hospitals near him - arguably the better hospitals - just suggested he look elsewhere and sent him home to die, just like they have with Kenna.
But shouldn't that choice be solely and wholly in the hands of the patient?? If I culture B. Cepacia, yes there's a possibility I won't survive the transplant. But there's a possibility I will! The few hospitals that will do B Cepacia patients have hundreds of success stories. Why doesn't the system recognize that? Give me the choice to either go home and die, or at least TRY before I die.
I know....there's also the bald fact of a lack of organs. There aren't enough to go around, even factoring in high-risk lungs. And so, again, the doctors are forced into making choices. Who gets to get on the bus? Who gets a seat? I had a seat saved for Kenna....and I really thought Kyle was gonna get one too.
Tonight, I am reminded of how very lucky I am; not just to have lived 300 days after transplant, but to have gotten one at all. And I am terrified that should I need a second one, the doctors will find something that makes them shake their heads, tell me I'm not a good candidate, and refuse to open the bus doors. But that day is hopefully a long, long way off. In the meantime, I take good care of myself, get my exercise, and try not to obsess over the unanswerable question: why me, and not them?
Showing posts with label Duke. Show all posts
Showing posts with label Duke. Show all posts
October 6, 2014
July 30, 2014
A soft lightning bolt
Post-transplant day #232
One year ago today, I was hit by a soft lightning bolt.
I'd been on Columbia's transplant list for 9 months already and had slowly come to the realization that people with Lung Allocation Scores in their 30s or 40s had zero chance of getting transplanted here. There were simply too many patients and, of course, not enough organs. Add to that the story of my dear friend Emily Gorsky, who lay dying in the ICU at the time, on full life support and yet STILL waiting for lungs, and I was getting downright scared.
One year ago today, I was hit by a soft lightning bolt.
I'd been on Columbia's transplant list for 9 months already and had slowly come to the realization that people with Lung Allocation Scores in their 30s or 40s had zero chance of getting transplanted here. There were simply too many patients and, of course, not enough organs. Add to that the story of my dear friend Emily Gorsky, who lay dying in the ICU at the time, on full life support and yet STILL waiting for lungs, and I was getting downright scared.
But on July 30th, 2013, I had an appointment with Dr Emily DiMango, my
CF physician at Columbia. She had first referred me for transplant and
now had called me in on thin pretense for a checkup. What she really
wanted was to tell me to start looking elsewhere. She suggested Barnes,
Cleveland, and Duke. I knew of the programs at Barnes (where my friend
Missy Sedam got transplanted) and Cleveland, but Duke had somehow eluded my radar.
Fear doesn't come easily to me, but I was on a foundering ship and I knew it. And now the person who had been the primary consigliere of my health for the last ten years was urging me to abandon ship, even though it meant me leaving her hospital. It was like getting hit by lighting, but softly. I didn't need a clearer sign. It was time to change ships, change berths, change captains.
To sum up the story, my mother and I would go to a nice dinner two nights later and go over the pros and cons of every option. We chose Duke and we have no regrets. In fact, I feel a little stupid it took as long as it did for me to consider Duke, knowing what I know now. I believe I was the first of the Columbia patients to be referred to Duke, though there may have been one or two before me. What is certain is that once Denise, Piper, and myself all arrived and the benefits started being realized and relayed back to Columbia, more and more referrals came into Duke from there, not just from Dr DiMango, but also from Dr Arcasoy, head of Columbia's transplant program, himself!
Today I am reminded of the power and grace and compassion good doctors embody. Dr. Emily DiMango is one of the best physicians I've ever had and I feel lucky to have ever known her.
Fear doesn't come easily to me, but I was on a foundering ship and I knew it. And now the person who had been the primary consigliere of my health for the last ten years was urging me to abandon ship, even though it meant me leaving her hospital. It was like getting hit by lighting, but softly. I didn't need a clearer sign. It was time to change ships, change berths, change captains.
To sum up the story, my mother and I would go to a nice dinner two nights later and go over the pros and cons of every option. We chose Duke and we have no regrets. In fact, I feel a little stupid it took as long as it did for me to consider Duke, knowing what I know now. I believe I was the first of the Columbia patients to be referred to Duke, though there may have been one or two before me. What is certain is that once Denise, Piper, and myself all arrived and the benefits started being realized and relayed back to Columbia, more and more referrals came into Duke from there, not just from Dr DiMango, but also from Dr Arcasoy, head of Columbia's transplant program, himself!
Today I am reminded of the power and grace and compassion good doctors embody. Dr. Emily DiMango is one of the best physicians I've ever had and I feel lucky to have ever known her.
March 20, 2014
Taking stock at 100 days.
Post-transplant day 100; rehab #50. Taking stock.
I don't have any deep thoughts today. I've just been ruminating over where I've been these last 100 days and how far I have yet to go. It is an amazing coincidence that my email started filling up again with subway service alerts today. I had turned these off exactly six months ago; shortly before moving to Durham. I'd figured six months should be more than enough.
Well, it was enough to get listed and transplanted and even recover to - what? about 85% functional status. But it hasn't been long enough to get me OUT OF DURHAM. And that is the sore point in all of this. There were a lot of things that could have been done differently and I could have been gone by now, or at least been packing up this next week. (I acknowledge that getting sick right in the middle of a clinic visit is almost certainly going to set anybody's going-home timetable back.) But I surely thought that by 100 days post-transplant, I'd be home again.
I'll admit this setback has affected me more than it probably should have. I feel marginally better after a long conversation wtih Piper Beatty today, who once again saves my sanity by showing me that what I'm experiencing is well-trodden transplant territory. These last 100 days - hell this whole last couple of years - has been made so much easier for having her counsel. I can't imagine how people go through this alone and without the benefit of an experienced guide.
What I've accomplished in 100 days is reasonable. Not everybody is able to jog, ride a bicycle, and do pull-ups and push-ups after 100 days. Mostly, we still feel like hell, even if its a better hell than the first days and weeks right after our surgery. What I HAVEN'T accomplished in 100 days weighs on my mind. I still can't jog a continuous mile, haven't returned home, can't lift what I could pre-transplant. Walking any distance still involves a new kind of effort (though once I get going, I can go quite a long time). People will tell me I should be satisfied with my progress so far; but if satisfaction with myself were in my nature, I wouldn't have achieved what modest marks I have at this point. I'm always pushing. Now, I never thought I'd be at 100% by 100 days, but I guess I thought I'd be a little further along than I am.
The past 100 days, though, has been primarily filled with pondering the source of my lungs - my donor and savior, that wonderful anonymous soul. What must his family be going through? Soon, at the 6-month mark, I will write a letter to my donor's family; a letter of thanks and of pride. I hope to be able to tell them they can be proud of their loved one, for having passed on beautiful lungs and that they can be proud of the recipient, for having used this gift to its maximum potential. I want to be able to write of wonderful adventures, such as the upcoming 5 Boro Tour and the Long Reach Long Rider's annual ride. I'll write of surviving a horrible disease and of recovering swiftly after transplant. And I'll write of finding a girlfriend, returning home, returning to work, and trying to live a life for two.
What will the next 100 days bring? I'll make plans, but I'll make no bets. Life is too strange and unpredictable right now. But I hope the next 100 is even better. Today I am reminded that transplant patients don't set the timetable, that patience is a virtue, and that any 100 days now is 100 more days than I had on the clock.
I don't have any deep thoughts today. I've just been ruminating over where I've been these last 100 days and how far I have yet to go. It is an amazing coincidence that my email started filling up again with subway service alerts today. I had turned these off exactly six months ago; shortly before moving to Durham. I'd figured six months should be more than enough.
Well, it was enough to get listed and transplanted and even recover to - what? about 85% functional status. But it hasn't been long enough to get me OUT OF DURHAM. And that is the sore point in all of this. There were a lot of things that could have been done differently and I could have been gone by now, or at least been packing up this next week. (I acknowledge that getting sick right in the middle of a clinic visit is almost certainly going to set anybody's going-home timetable back.) But I surely thought that by 100 days post-transplant, I'd be home again.
I'll admit this setback has affected me more than it probably should have. I feel marginally better after a long conversation wtih Piper Beatty today, who once again saves my sanity by showing me that what I'm experiencing is well-trodden transplant territory. These last 100 days - hell this whole last couple of years - has been made so much easier for having her counsel. I can't imagine how people go through this alone and without the benefit of an experienced guide.
What I've accomplished in 100 days is reasonable. Not everybody is able to jog, ride a bicycle, and do pull-ups and push-ups after 100 days. Mostly, we still feel like hell, even if its a better hell than the first days and weeks right after our surgery. What I HAVEN'T accomplished in 100 days weighs on my mind. I still can't jog a continuous mile, haven't returned home, can't lift what I could pre-transplant. Walking any distance still involves a new kind of effort (though once I get going, I can go quite a long time). People will tell me I should be satisfied with my progress so far; but if satisfaction with myself were in my nature, I wouldn't have achieved what modest marks I have at this point. I'm always pushing. Now, I never thought I'd be at 100% by 100 days, but I guess I thought I'd be a little further along than I am.
The past 100 days, though, has been primarily filled with pondering the source of my lungs - my donor and savior, that wonderful anonymous soul. What must his family be going through? Soon, at the 6-month mark, I will write a letter to my donor's family; a letter of thanks and of pride. I hope to be able to tell them they can be proud of their loved one, for having passed on beautiful lungs and that they can be proud of the recipient, for having used this gift to its maximum potential. I want to be able to write of wonderful adventures, such as the upcoming 5 Boro Tour and the Long Reach Long Rider's annual ride. I'll write of surviving a horrible disease and of recovering swiftly after transplant. And I'll write of finding a girlfriend, returning home, returning to work, and trying to live a life for two.
What will the next 100 days bring? I'll make plans, but I'll make no bets. Life is too strange and unpredictable right now. But I hope the next 100 is even better. Today I am reminded that transplant patients don't set the timetable, that patience is a virtue, and that any 100 days now is 100 more days than I had on the clock.
March 17, 2014
Miracles keep happening.
Post-transplant day 97, rehab #47.
I go to rehab or the hospital and am taken care of by people who have lived in this world for so long that the shock is no longer there - news of transplant or news of death has become a routine and brief moment of joy or upset for the cadre of caregivers we know as doctors, nurses, and therapists. It's an aspect of the job that can't be helped. Rarely can they afford to make the kind of personal connections we patients make among ourselves.
But being here so long has similarly numbed me (a little) to the reality that continues to unfold around me. Day in and day out I associate with people whose lives are on the line, or who recently faced their own life-and-death trial. It is BIZARRE that news of a friend getting transplanted should have become routine. It is HATEFUL that news of friends or friends-of-friends passing from complications of transplant or from cystic fibrosis has also become routine.
But I forgot, though, that today's a holiday and first-order friends of mine tend to get transplanted on holidays. Today began with news from Andrea Hughes Maechtle that she'd gotten a third call! And I've been hanging on FB all day to see if she'd post an update, or not - which would have its own meaning. I knocked around rehab and found out that TWO people got called this morning, but don't know who the second person is. I spoke on the phone to Dr Hartwig's secretary, concerning a scheduling matter, and she said she'd have to confirm with him later, that he was currently in surgery and there was a second patient waiting for surgery, too. It was not too great a stretch to assume that one of my two friends was currently getting her lungs!
Now I just saw on Andrea's wall that "It's a go!" which means that she is just now being wheeled into her own surgery. I am THRILLED for Andrea! She waited more than nine months on the list here, as she was a hard to match case. I wish her all the best luck and hope she'll bring the same determination and stick-to-it-iveness to recovery that she brought to rehab.
But I'm left wondering who the other person was who got called and, it seems, was transplanted earlier today? Looking around and taking stock of who was missing from rehab, which was quite a lot of people, there are several possibilities, but dare I hope it was Heather James?? It would be so poetic: her birthday is tomorrow. [Edit: it was not Heather James. And later that night, Ellie Levy got her call and was transplanted the next morning on Heather's birthday!]
Today I am reminded of what it really feels like to be overwhelmed by the enormity of the moment. That although miracles happen every day here at Duke, they are nevertheless miracles. Each and every transplant is a stunning occurrence involving a confluence of skills, planning, preparation, and sheer luck that amounts to winning the lottery. I thank the Duke transplant team for saving our lives; and I deeply, lovingly thank the two anonymous donors who selflessly gave their organs so that life can continue in at least two more people today.
I go to rehab or the hospital and am taken care of by people who have lived in this world for so long that the shock is no longer there - news of transplant or news of death has become a routine and brief moment of joy or upset for the cadre of caregivers we know as doctors, nurses, and therapists. It's an aspect of the job that can't be helped. Rarely can they afford to make the kind of personal connections we patients make among ourselves.
But being here so long has similarly numbed me (a little) to the reality that continues to unfold around me. Day in and day out I associate with people whose lives are on the line, or who recently faced their own life-and-death trial. It is BIZARRE that news of a friend getting transplanted should have become routine. It is HATEFUL that news of friends or friends-of-friends passing from complications of transplant or from cystic fibrosis has also become routine.
But I forgot, though, that today's a holiday and first-order friends of mine tend to get transplanted on holidays. Today began with news from Andrea Hughes Maechtle that she'd gotten a third call! And I've been hanging on FB all day to see if she'd post an update, or not - which would have its own meaning. I knocked around rehab and found out that TWO people got called this morning, but don't know who the second person is. I spoke on the phone to Dr Hartwig's secretary, concerning a scheduling matter, and she said she'd have to confirm with him later, that he was currently in surgery and there was a second patient waiting for surgery, too. It was not too great a stretch to assume that one of my two friends was currently getting her lungs!
Now I just saw on Andrea's wall that "It's a go!" which means that she is just now being wheeled into her own surgery. I am THRILLED for Andrea! She waited more than nine months on the list here, as she was a hard to match case. I wish her all the best luck and hope she'll bring the same determination and stick-to-it-iveness to recovery that she brought to rehab.
But I'm left wondering who the other person was who got called and, it seems, was transplanted earlier today? Looking around and taking stock of who was missing from rehab, which was quite a lot of people, there are several possibilities, but dare I hope it was Heather James?? It would be so poetic: her birthday is tomorrow. [Edit: it was not Heather James. And later that night, Ellie Levy got her call and was transplanted the next morning on Heather's birthday!]
Today I am reminded of what it really feels like to be overwhelmed by the enormity of the moment. That although miracles happen every day here at Duke, they are nevertheless miracles. Each and every transplant is a stunning occurrence involving a confluence of skills, planning, preparation, and sheer luck that amounts to winning the lottery. I thank the Duke transplant team for saving our lives; and I deeply, lovingly thank the two anonymous donors who selflessly gave their organs so that life can continue in at least two more people today.
March 12, 2014
Recovery, phase two
Post-tx day 92, pulmonary rehab #44
As of today, I've now spent as many sessions in rehab post-transplant as I did pre. It was on December 10th that I did my 44th session and got the call for new lungs. December 10th, my life changed, in some ways unpredictably so.
One of the things I could not have predicted is the "stickiness" of the post-transplant weakness, the debilitation. Some of that I surely earned, after a year of not running, months of not bicycling, barely keeping up with a New Yorker's level of walking and stair-climbing (and beginning to find ways around that too!) Some of the debilitation isn't earned, but is thrust upon me by the act of transplant itself. I can't describe well enough to those who haven't been through this just what this surgery does to you; how quickly you are robbed of your strength in every limb and wracked with pain in every joint, not just the limbs and joints operated upon.
These first three months have seen me make an amazing comeback, by anyone's standards. My lung function is getting close to normal, I am stronger in rehab than I was before transplant, and today I was able to sustain 6 mph on the treadmill for two full minutes (and then repeats of somewhat shorter duration). This is all good news on the comeback trail.
But I still don't feel like myself.
I was talking to Piper Beatty about this today and it dawned on me that my friends who have been through transplant all seemed to really start to blossom AFTER the three-month mark. No matter how hard or easy their transplant journey, they seemed to start to recover THEMSELVES only after 90 days had passed. Not to say there haven't been complications and setbacks, but it was only in this later period do I start seeing posts from Emily Gorsky about getting out shopping for the fun of it, taking dance lessons, and spending a whole lot of time with a boy. It's only in this post-90-days period that I started seeing posts from Jerry Cahill about running real distance and pictures where he looked his former self. And considering he rode a 40-miler with me just 8 months after his transplant, I think I'm safe in assuming the best is yet to come.
Recovery will happen as it happens. And I'm lucky to be able to even say that. While I struggle, I struggle ALIVE and that's more than can be said for some of my compatriots. Yesterday we lost two more CFers, one of them here at Duke waiting for lungs. I don't know what happened, but it must have been sudden. Massive hemoptysis, perhaps. I grieve for Colleen and pour my anger that somehow we let her down into my efforts at rehab, no matter how strong I do or don't feel.
My hospitalization last week and the current antibiotics have left me feeling weakened again and hollow. But today I was reminded that this too shall pass - this too MUST pass - and I'll soon be riding and jogging the streets of New York again, as strong as ever. But I have to give this process the time it is due.
As of today, I've now spent as many sessions in rehab post-transplant as I did pre. It was on December 10th that I did my 44th session and got the call for new lungs. December 10th, my life changed, in some ways unpredictably so.
One of the things I could not have predicted is the "stickiness" of the post-transplant weakness, the debilitation. Some of that I surely earned, after a year of not running, months of not bicycling, barely keeping up with a New Yorker's level of walking and stair-climbing (and beginning to find ways around that too!) Some of the debilitation isn't earned, but is thrust upon me by the act of transplant itself. I can't describe well enough to those who haven't been through this just what this surgery does to you; how quickly you are robbed of your strength in every limb and wracked with pain in every joint, not just the limbs and joints operated upon.
These first three months have seen me make an amazing comeback, by anyone's standards. My lung function is getting close to normal, I am stronger in rehab than I was before transplant, and today I was able to sustain 6 mph on the treadmill for two full minutes (and then repeats of somewhat shorter duration). This is all good news on the comeback trail.
But I still don't feel like myself.
I was talking to Piper Beatty about this today and it dawned on me that my friends who have been through transplant all seemed to really start to blossom AFTER the three-month mark. No matter how hard or easy their transplant journey, they seemed to start to recover THEMSELVES only after 90 days had passed. Not to say there haven't been complications and setbacks, but it was only in this later period do I start seeing posts from Emily Gorsky about getting out shopping for the fun of it, taking dance lessons, and spending a whole lot of time with a boy. It's only in this post-90-days period that I started seeing posts from Jerry Cahill about running real distance and pictures where he looked his former self. And considering he rode a 40-miler with me just 8 months after his transplant, I think I'm safe in assuming the best is yet to come.
Recovery will happen as it happens. And I'm lucky to be able to even say that. While I struggle, I struggle ALIVE and that's more than can be said for some of my compatriots. Yesterday we lost two more CFers, one of them here at Duke waiting for lungs. I don't know what happened, but it must have been sudden. Massive hemoptysis, perhaps. I grieve for Colleen and pour my anger that somehow we let her down into my efforts at rehab, no matter how strong I do or don't feel.
My hospitalization last week and the current antibiotics have left me feeling weakened again and hollow. But today I was reminded that this too shall pass - this too MUST pass - and I'll soon be riding and jogging the streets of New York again, as strong as ever. But I have to give this process the time it is due.
March 4, 2014
Saying goodbye to a friend
12 weeks post-transplant today; pulmonary rehab #42.
At 84 days post, I've reached many new milestones in my recovery, including being able to pick up the pace on the treadmill to a full 6 mph for 4 repeats of 60-75 seconds. Weights and resistance bands are increasing, reps going up. Etc.
But my happiness over this progress is right now thrown into stunning negative by another kind of progression, the one Steve Bell recently wrote about. Downward progression is claiming a friend.
One of my transplant group, Jeannette Keefer, #1398, is not going to make it. As I write this, she lays in ICU dying. Everything that can be done has been and the decision was made over the weekend to discontinue life-saving measures and let nature take its course. At 73, she had the disadvantage of age, but she was a spirited fighter. She is much like a grandmother to me, and all of us in our transplant group - the last dozen transplants or so of 2013 - love her very much. She and I started rehab about the same time, got listed within a couple weeks of each other, and she was transplanted just four days before me. She's been in ICU for 88 days, battling one complication after another. And now, perhaps mercifully, it is coming to an end.
I'm distressed for her husband Jim, her children and grandchildren. I'm distressed for our transplant group. Losing someone like this is not common. And it's hard to look at someone still breathing yet knowing her life is slipping away and there's nothing to be done about it. But I took her hand and I told her how proud I am of her, for being brave enough to reach for life and for fighting the good fight. She did a good job.
Tonight, I am reminded that it is a horrible fucking thing to have to say your final goodbyes. But I am also reminded how wonderful it is to get the chance to say them, before it is too late.
At 84 days post, I've reached many new milestones in my recovery, including being able to pick up the pace on the treadmill to a full 6 mph for 4 repeats of 60-75 seconds. Weights and resistance bands are increasing, reps going up. Etc.
But my happiness over this progress is right now thrown into stunning negative by another kind of progression, the one Steve Bell recently wrote about. Downward progression is claiming a friend.
One of my transplant group, Jeannette Keefer, #1398, is not going to make it. As I write this, she lays in ICU dying. Everything that can be done has been and the decision was made over the weekend to discontinue life-saving measures and let nature take its course. At 73, she had the disadvantage of age, but she was a spirited fighter. She is much like a grandmother to me, and all of us in our transplant group - the last dozen transplants or so of 2013 - love her very much. She and I started rehab about the same time, got listed within a couple weeks of each other, and she was transplanted just four days before me. She's been in ICU for 88 days, battling one complication after another. And now, perhaps mercifully, it is coming to an end.
I'm distressed for her husband Jim, her children and grandchildren. I'm distressed for our transplant group. Losing someone like this is not common. And it's hard to look at someone still breathing yet knowing her life is slipping away and there's nothing to be done about it. But I took her hand and I told her how proud I am of her, for being brave enough to reach for life and for fighting the good fight. She did a good job.
Tonight, I am reminded that it is a horrible fucking thing to have to say your final goodbyes. But I am also reminded how wonderful it is to get the chance to say them, before it is too late.
February 24, 2014
The Accidental Exemplar
Post-transplant day 76; pulmonary rehab #37.
I did good today. Not just in a manner of having notched new benchmarks physically*, but also performed a mitzvah. And for once, I'm not going to be humble about it.
[ *I skipped the stationary bike today, instead doing 8 miles on Stoic on the American Tobacco Trail before rehab. That was a pretty nice workout! And then on the treadmill at rehab, using April as a timer, I was able to do jog repeats of a minimum of 90 seconds and one of them finally reached a two-minute span! And I only walked three minute intervals. Yay me.]
Since shortly after transplant I've been experiencing feelings of guilt over the course of my recovery. It's been good; it's been - honestly - relatively easy. Other patients have every reason to be jealous and to accuse me of not actually having had the full transplant experience. I don't know why I haven't had so many problems. I am mindful of the collection of complications, procedures, and extended hospital stays I did NOT have. Without naming names, I have close friends all transplanted here at Duke and within a few weeks of me on either side, who have collectively experienced: uncontrolled bleeding, uncontrollable diarrhea, loss of digits, damage to the heart, strokes, heart attacks, sepsis, failing kidneys, failing liver, paralyzed diaphragm, bowel blockages, subcutaneous air, fluid buildup in the extremities, fluid around the lungs, nausea, uncontrollable pain, G-J tubes, tracheotomies, failed PICC lines, failed ports, clots, ECMO...
I have experienced NONE of that -- yet I dare count myself among the transplanted warriors? I know NOTHING of the true pains of transplant! I know this now.
But today I was put on the spot by the physical therapist teaching this afternoon's education class. It was one I hadn't heard yet, even after a total of 80 previous rehab sessions, so I sat in. She was talking about the importance of being as physically fit as possible for transplant recovery. Duke researchers have statistically linked 6-minute-walk distances pre-transplant to length-of-stay post transplant. The farther you can go, the shorter your hospital stay, in general. And they have a minimum required distance for a reason.
"Now, I don't want to call anybody out in here," she said, "but would anybody post-transplant like to say something about this?" Not QUITE looking at me. I wanted to say "oh, sure, but that's a very general correlation." I certainly know exceptions. People who worked hard in rehab, but ended up hospitalized for a long time; and people who kinda slacked at rehab, but who were out in two weeks. Statistics aren't a promise, I guess.
So I stepped up, played the party line, and explained my case. "Nine days." I let that sink in for a moment. "I spent 44 sessions of rehab before transplant and I worked hard at each and every one of them. My last pre-transplant 6-minute walk was 7 laps. And I was in the hospital only 9 days. I don't know how long I'd have been there if I hadn't built up my strength here in rehab first." I didn't elaborate further, but figured those who want to know more will seek me out.
And they did. I talked with three patient-caregiver couples before they left, providing details, even once explaining how astounded I was when I was asked to stand and walk in ICU - and did!
I hit the restroom before I left and on my way out, the lecturer caught up to me.
"I didn't mean to put you on the spot, but these patients really needed to hear that. From you." She went on. "We're finding more and more that patients complain they don't have enough contact with post-transplant patients - they just need somebody to talk to and they want to hear the positive stories."
Well... patients want to hear - NEED to hear - what's coming, good and bad. Period. It is dishonest not to brace them about the possible and probable complications; it's almost criminal not to give them a precis of typical procedures that often need to be done post-transplant. It's a fucking horrorshow storybook, to be sure. But as I've been told and as I've seen, incoming patients also want - need - to hear how well it can go, as well. That with hard work, careful planning, and good luck a transplant can go by the book. It is possible to recover well and get out in nine days. And come back to rehab and burn up the track.
Today I was reminded that my recovery, while not perfect by any means, has been enough of a shining example that it provides real hope and inspiration to some very sick and desperate people. My feelings of guilt are not going to go away; but if I acknowledge that there's something in my story worth teaching, those feelings are partially neutralized. If just one more patient has a better recovery for using me as an example of how it's done (as I have used Rudy and Jerry), then I'll have gained some worth in this community.
I did good today. Not just in a manner of having notched new benchmarks physically*, but also performed a mitzvah. And for once, I'm not going to be humble about it.
[ *I skipped the stationary bike today, instead doing 8 miles on Stoic on the American Tobacco Trail before rehab. That was a pretty nice workout! And then on the treadmill at rehab, using April as a timer, I was able to do jog repeats of a minimum of 90 seconds and one of them finally reached a two-minute span! And I only walked three minute intervals. Yay me.]
Since shortly after transplant I've been experiencing feelings of guilt over the course of my recovery. It's been good; it's been - honestly - relatively easy. Other patients have every reason to be jealous and to accuse me of not actually having had the full transplant experience. I don't know why I haven't had so many problems. I am mindful of the collection of complications, procedures, and extended hospital stays I did NOT have. Without naming names, I have close friends all transplanted here at Duke and within a few weeks of me on either side, who have collectively experienced: uncontrolled bleeding, uncontrollable diarrhea, loss of digits, damage to the heart, strokes, heart attacks, sepsis, failing kidneys, failing liver, paralyzed diaphragm, bowel blockages, subcutaneous air, fluid buildup in the extremities, fluid around the lungs, nausea, uncontrollable pain, G-J tubes, tracheotomies, failed PICC lines, failed ports, clots, ECMO...
I have experienced NONE of that -- yet I dare count myself among the transplanted warriors? I know NOTHING of the true pains of transplant! I know this now.
But today I was put on the spot by the physical therapist teaching this afternoon's education class. It was one I hadn't heard yet, even after a total of 80 previous rehab sessions, so I sat in. She was talking about the importance of being as physically fit as possible for transplant recovery. Duke researchers have statistically linked 6-minute-walk distances pre-transplant to length-of-stay post transplant. The farther you can go, the shorter your hospital stay, in general. And they have a minimum required distance for a reason.
"Now, I don't want to call anybody out in here," she said, "but would anybody post-transplant like to say something about this?" Not QUITE looking at me. I wanted to say "oh, sure, but that's a very general correlation." I certainly know exceptions. People who worked hard in rehab, but ended up hospitalized for a long time; and people who kinda slacked at rehab, but who were out in two weeks. Statistics aren't a promise, I guess.
So I stepped up, played the party line, and explained my case. "Nine days." I let that sink in for a moment. "I spent 44 sessions of rehab before transplant and I worked hard at each and every one of them. My last pre-transplant 6-minute walk was 7 laps. And I was in the hospital only 9 days. I don't know how long I'd have been there if I hadn't built up my strength here in rehab first." I didn't elaborate further, but figured those who want to know more will seek me out.
And they did. I talked with three patient-caregiver couples before they left, providing details, even once explaining how astounded I was when I was asked to stand and walk in ICU - and did!
I hit the restroom before I left and on my way out, the lecturer caught up to me.
"I didn't mean to put you on the spot, but these patients really needed to hear that. From you." She went on. "We're finding more and more that patients complain they don't have enough contact with post-transplant patients - they just need somebody to talk to and they want to hear the positive stories."
Well... patients want to hear - NEED to hear - what's coming, good and bad. Period. It is dishonest not to brace them about the possible and probable complications; it's almost criminal not to give them a precis of typical procedures that often need to be done post-transplant. It's a fucking horrorshow storybook, to be sure. But as I've been told and as I've seen, incoming patients also want - need - to hear how well it can go, as well. That with hard work, careful planning, and good luck a transplant can go by the book. It is possible to recover well and get out in nine days. And come back to rehab and burn up the track.
Today I was reminded that my recovery, while not perfect by any means, has been enough of a shining example that it provides real hope and inspiration to some very sick and desperate people. My feelings of guilt are not going to go away; but if I acknowledge that there's something in my story worth teaching, those feelings are partially neutralized. If just one more patient has a better recovery for using me as an example of how it's done (as I have used Rudy and Jerry), then I'll have gained some worth in this community.
February 21, 2014
Missing pieces
Post-transplant day 73, pulmonary rehab #36. The missing piece.
Call it worry. Call it unhappy anticipation. Call it separation anxiety. But when one of my people is missing from rehab, I get anxious. I get the jitters and can't focus.
Let me define "my people". I'm talking about my close friends, especially the ones I knew before I moved to Durham, but also the ones w/ CF who made contact w/ me early and who have depended on me for advice and anecdotes and guidance. The ones who work hard in rehab and who anxiously await their transplants; or the ones who have had their transplants and are struggling to get out or stay out of the hospital. My sisters and my brothers. "My people" is a list that grows longer weekly, it seems, but it only goes to show that the friends you make in rehab are something special.
So when a rehab day goes by that someone doesn't show up, it can be for only four reasons: they got transplanted and are in the hospital; they got sick and are back in the hospital; they had conflicting clinic appointments; or, recovered enough with all surgeries done, they graduated and went home. Of course you can imagine I fear the worst each time, especially when someone isn't yet even listed, or is newly post-transplant.
I look around each day and wonder who's missing? When I figure out who isn't there, I wonder why? Generally I can't ask the staff. Even if they know, they're constrained by HIPAA. What I can get from staff is whether they know or not - which means hospital/clinic...or the person is gone for some other reason. Maybe people just play hooky from time to time. Hell, I wanted to play hooky today. Still, even if it's just a clinic conflict, I'm relieved when they come back. Rehab doesn't seem *right* until they're back, because I firmly believe rehab is our place. When someone is gone, it's as if a piece is missing from a puzzle.
I don't know if anybody else feels the same sort of stress when their friends are absent. I don't know if anybody feels that way about ME, although I do know I'm asked after. And the time grows near when I will be gone for good; back to my home in NYC and only visiting rehab when I have a multiple-day stay in Durham for some procedure. And those will be few and far between, and my friends will - I hope - have also soon moved on. When I do leave, in March, will people notice I've gone missing?
Recently, a friend of mine, Dan Jagendorff, passed away. He was too young, too young; yet he is gone. Unexpectedly....ripped fom us - his friends, family, and colleagues - without warning. This next season at Spaeth Design will be hard without Dan's presence in the prop shop. The man could build anything. There's a raw part of my soul where my decade-old friendship with Dan used to be. The Spaeth puzzle will find a replacement piece, but the fit won't be the same. The picture will be different.
Similarly, it is that way at rehab when people leave for good. The mix changes; the change in rhythm hurts a little. Then a new rhythm develops...until, once again, someone goes missing.
Sometimes, they don't come back after transplant. It is rare, but I know of two, one of whom I had just started to get to know better at rehab. It's an uncomfortable fact of our modern science: transplantation is dangerous. It is imperfect, touchy, life-and-death. Some never make it to transplant; we are sick, after all, and there's a shortage of organs. And some people never leave the hospital. They are not merely a missing piece at rehab, but also in the lives of the people who knew them, much as each and every donor is now a missing piece in the puzzle of their loved ones' lives.
At my initial surgical consult, Dr. Reddy was very blunt: I may not survive the surgery. 1% don't. I may die in the hospital. Another 1-2%. 5% of those who leave the hospital won't survive their first year. While I had (have) everything going for me, I could shove those small chances to the back of my mind - but I do have a will and advanced directive because of those very possibilities. I am left wondering, though, now that I'm on the other side: have I made enough impact on people's lives, brought them enough joy, that I would have left a Cris-shaped hole in the universe? Would the pictures of people's lives have been missing a piece? And what light would shine through that hole?
Today I looked around and, excepting April who I knew was out due to surgery and Denise who is still inpatient, it seemed everybody expected was there. Piper, Lynda, Corey, Ellie, JD, Heather, Rob, Corrine, the Weird Sisters, and even my newest acquaintances, Gloria, Kristin, Jesse, and Cynthia. My anxiety was greatly reduced.
Today I was reminded that though you can fill the pieces in and complete the puzzle in a number of ways, you will never get the same picture as before. All you can hope for is as complete a picture as possible.
Call it worry. Call it unhappy anticipation. Call it separation anxiety. But when one of my people is missing from rehab, I get anxious. I get the jitters and can't focus.
Let me define "my people". I'm talking about my close friends, especially the ones I knew before I moved to Durham, but also the ones w/ CF who made contact w/ me early and who have depended on me for advice and anecdotes and guidance. The ones who work hard in rehab and who anxiously await their transplants; or the ones who have had their transplants and are struggling to get out or stay out of the hospital. My sisters and my brothers. "My people" is a list that grows longer weekly, it seems, but it only goes to show that the friends you make in rehab are something special.
So when a rehab day goes by that someone doesn't show up, it can be for only four reasons: they got transplanted and are in the hospital; they got sick and are back in the hospital; they had conflicting clinic appointments; or, recovered enough with all surgeries done, they graduated and went home. Of course you can imagine I fear the worst each time, especially when someone isn't yet even listed, or is newly post-transplant.
I look around each day and wonder who's missing? When I figure out who isn't there, I wonder why? Generally I can't ask the staff. Even if they know, they're constrained by HIPAA. What I can get from staff is whether they know or not - which means hospital/clinic...or the person is gone for some other reason. Maybe people just play hooky from time to time. Hell, I wanted to play hooky today. Still, even if it's just a clinic conflict, I'm relieved when they come back. Rehab doesn't seem *right* until they're back, because I firmly believe rehab is our place. When someone is gone, it's as if a piece is missing from a puzzle.
I don't know if anybody else feels the same sort of stress when their friends are absent. I don't know if anybody feels that way about ME, although I do know I'm asked after. And the time grows near when I will be gone for good; back to my home in NYC and only visiting rehab when I have a multiple-day stay in Durham for some procedure. And those will be few and far between, and my friends will - I hope - have also soon moved on. When I do leave, in March, will people notice I've gone missing?
Recently, a friend of mine, Dan Jagendorff, passed away. He was too young, too young; yet he is gone. Unexpectedly....ripped fom us - his friends, family, and colleagues - without warning. This next season at Spaeth Design will be hard without Dan's presence in the prop shop. The man could build anything. There's a raw part of my soul where my decade-old friendship with Dan used to be. The Spaeth puzzle will find a replacement piece, but the fit won't be the same. The picture will be different.
Similarly, it is that way at rehab when people leave for good. The mix changes; the change in rhythm hurts a little. Then a new rhythm develops...until, once again, someone goes missing.
Sometimes, they don't come back after transplant. It is rare, but I know of two, one of whom I had just started to get to know better at rehab. It's an uncomfortable fact of our modern science: transplantation is dangerous. It is imperfect, touchy, life-and-death. Some never make it to transplant; we are sick, after all, and there's a shortage of organs. And some people never leave the hospital. They are not merely a missing piece at rehab, but also in the lives of the people who knew them, much as each and every donor is now a missing piece in the puzzle of their loved ones' lives.
At my initial surgical consult, Dr. Reddy was very blunt: I may not survive the surgery. 1% don't. I may die in the hospital. Another 1-2%. 5% of those who leave the hospital won't survive their first year. While I had (have) everything going for me, I could shove those small chances to the back of my mind - but I do have a will and advanced directive because of those very possibilities. I am left wondering, though, now that I'm on the other side: have I made enough impact on people's lives, brought them enough joy, that I would have left a Cris-shaped hole in the universe? Would the pictures of people's lives have been missing a piece? And what light would shine through that hole?
Today I looked around and, excepting April who I knew was out due to surgery and Denise who is still inpatient, it seemed everybody expected was there. Piper, Lynda, Corey, Ellie, JD, Heather, Rob, Corrine, the Weird Sisters, and even my newest acquaintances, Gloria, Kristin, Jesse, and Cynthia. My anxiety was greatly reduced.
Today I was reminded that though you can fill the pieces in and complete the puzzle in a number of ways, you will never get the same picture as before. All you can hope for is as complete a picture as possible.
January 31, 2014
Multiplicity
Post-transplant day #51, pulmonary rehab #24.
I strip off my sweaty workout clothes. Then, like the newly blind, my fingers slowly and curiously trace the line of brail that tells the most recent chapter in my life story. The rivulet of new, pink fibrotic tissue leads my fingertips from one armpit to the other along a meandering course, detouring below both breasts, but rising in a graceful arc across my sternum. But I encounter not soft, yielding newly-mended flesh, but rather the protective metal bridges forcibly punched into my skin, spanning from one bank to the other, feeling being gained along the short trip south across the incision.
My breasts are numb. Most of the nerves that pick up sensation come upward, from below and behind. Saving my life meant cutting through those nerves, leaving my nipples, aereola, and surrounding breasts deadened. Yet immediately south of the scar, sensation has returned almost completely, the nerve endings there still having a pathway back to my brain.
As my fingers play the counting game, starting at one armpit and attempting to single out each individual staple along the way, testing, pushing a little, seeing which ones are firm and which ones wiggle, I come across a livelier zone of sensation. Across my sternum, both sides of the river of scar tissue are active. Sensation in the north and the south. Then I am again back in familiar territory - a mirrored map of the other side, still with sensation below the line of demarcation, none above.
This long river of a scar, paired with the outpost glacial lake above it, marking where my port once stood proud of my chest, is now the story of my life. Well, two lives, really. Four, if you want to get technical.
What? Four?
After rehab today, a few of us made impromptu plans for dinner, ending up at an ale house. In the course of conversation, it came up that of the three of us transplantees who were there, one is a retransplant and that the first time around, she received seven units of blood. I got to thinking about that. I'd almost forgotten about the blood transfusions.
First transplants are generally less bloody, as the scalpel cauterizes as it goes. My own transplant went well, yet I required two blood transfusions afterwards [I don't know how many units (if any) during the operation]. But at 4:28 a.m. December 11th, and again at 6:47 a.m., I required extra blood. Two units of blood from two strangers who donated at some point in the last few weeks. People who didn't know how or when or why their blood would be used - or even if - yet took time out of their busy schedules to donate just in case it could be used.
Which means that not only did one stranger save my life, but three. Though the body replaces blood, I will forever have a small part of two other living souls in me, as well as a large part of one deceased donor. I am grateful even for these smaller, easier donations, for without the simple blood transfusions, i would not have made it.
As my fingers trace my zipper of staples, my thoughts are directed again towards my main donor. Who was this person? What were they like? I have no way of knowing right now; not even if my donor was a man or woman, old or young. I love how these lungs feel in me and how well they'e doing - so I imagine my donor to be much like me: male, approaching middle age or slightly younger, about my size. I don't believe he ever smoked a day in his life. I think he may have been physically fit in general, if not an athlete. This is all supposition, of course. I am imagining a person I can easily admire and so feel closer kinship, reassuring myself that my new lungs once belonged to someone I could have called brother.
Perhaps it is completely different. Maybe these lungs came from a person I would be unable to connect with in usual society. Sassy, loud and proud black woman? Tiring Chinese immigrant empty-nester? Regular ol' white trash with no education, no morals, no self-control? Perhaps. And if so, then even then I embrace that person as my brother or sister and am forever grateful - because for whomever he (or she) may have been, whatever good or bad he did in life, whatever impact he made or failed to make on the people around him, he did three things so absolutely right: he took good care of his lungs in his lifetime, he consented to be an organ donor, and he let his family know his wishes. And for those acts, he saved my life.
I have no way to thank him directly. Never will be able to. But I can live life for two, now. I can honor the multiplicity of lives that have combined to keep mine going by living each day fully, setting new goals, exploring new territory, achieving new successes, giving back to the community with my time and energy. I have no choice in this. To walk away from Durham and live only for myself would be a sin.
Tonight, sitting at the table with two close friends, totaling four complete double-lung transplants and multiple transfusions, I was struck by how many souls really partook in our humble meal, and that three of us are living for six of us. Tonight I am reminded that the best way to honor my donor's sacrifice is to live doubly; for now, I breathe for two.
January 22, 2014
O, Death
Post-transplant day 43.
"O Death," someone would pray,
"Can you wait to call me another day?"
Let's not fool ourselves. This isn't about illness or transplant or recuperation. It isn't about a "viable treatment strategy for end-stage lung disease." This is about cheating death, plain and simple.
We tend to avoid using that term, "death". As if we're afraid, as humans, that by invoking its name, it will come all the faster. We swerve away from listing it in our minds as among the possible consequences of getting a transplant, or not getting one in time. The docs are not so averse. They are blunt and up front about that possibility. They have to be; because it happens. From time to time.
Let me be blunt. Whenever I used the phrase in writing or conversation, "I don't have much time left," I wasn't kidding. As my PFTs plummeted and my CO2 levels climbed, I could feel death closing in. I had a bad scare one day in rehab about seven weeks ago when in the midst of CO2 induced tunnel-vision, I mistook Piper Beatty's figure as the Grim Reaper himself. I am not one to believe in the supernatural - but my heart skipped a beat.
Death also haunts us even once lungs come. Death is waiting in the operating room, in PACU, in ICU. It is to the surgeons credit that only 1% die on the operating table these days and fewer than 5% before leaving the hospital. Death waits for us even then, coming in the form of bacteria, viruses, fungii, parasites, rejection, or cancer. These target the immunosuppressed.
But the possibility of death is never far away. I have one grandmotherly friend in ICU sixty days now and has been shocked back to life a number of times. And another New York-to-Durham CFer, pre-tx, had a heart attack during routine PFTs....he never came back. And even though well into recovery, my friends in the hospital experience setbacks that still carry the risk of death, however slight. They are discouraged and they are scared. Typically, whatever problem it was eases and nobody thinks of death anymore, only recovery and life.
If you ever, at any point, thought, "Oh, of course Cris will get lungs!" then be reminded that there was never a guarantee and that the situation was not good. My lung volume was dwindling weekly. My CO2 retention was rising geometrically. I was one more clinic appointment away from being put on bipap. I was not taking it for granted that I'd live to see New Year's, though I like to believe I could have hung on for several months longer. I was worried. But always, always I had faith in Duke.
O Death please consider my age
Please don't take me at this stage!
Why do I write about this now, six weeks post-transplant? Should I not be celebrating every small gain, every longer stride, each and every sequential breath? Oh, I do!
But the fact remains that in the last four days, I've come across four notices of the passing of CFers. None of them I knew personally, all younger than me. Cystic Fibrosis still kills and it kills kids. I don't think any of these four even had obtained their 30th year! And I watch the behaviours of other young cystics - somewhat self-destructive behaviours - and I'm terrified for them. They've fought against this disease for so long, they've forgotten that death is a real possibility. All it'll take is the right massive chest infection or bowel blockage.
As due diligence toward a future project, I'm delving into the mass of CF-focused narrative literature. There's a certain foundational reading series that is "required" of the knowledgeable CFer and I've been lax on reading anything but the Cliff's Notes versions. Alex, The Life of a Child; Sick Girl Speaks; The Power of Two; Sixtyfive Roses...among others. I have noticed that for each book that talks of triumphing over CF, there is a book written by the survivors - and in these books death wins.
Of course, Death comes for us all. It's a given. But being 42 years old, and highly privileged to know even older CFers such as Jerry Cahill, Lynda Jensen, and Janine Ullyette, I want to strike out against Death with the battle cry that we should ALL live to enjoy achy joints and greying hair!
All of this makes me angry. And all I can do, right now, is channel that anger back into my efforts in rehab. I walk laps faster and faster, push through the pain. And when in my headphones "O Death" from O Brother, Where Art Thou? comes on, I intersperse my own lyric, whispering: "I beat death. I am beating death. I beat death. I am beating death..."
It is five o'clock in the morning on the 43rd day after my surgeons and I beat back death. As the snow falls, I am reminded that every coming dawn is another victory over death; that though for the rest of my life, I will be in a pitched battle against death, for each day I grow stronger, I push death just a little farther away.
O Death O Death
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
"O Death," someone would pray,
"Can you wait to call me another day?"
Let's not fool ourselves. This isn't about illness or transplant or recuperation. It isn't about a "viable treatment strategy for end-stage lung disease." This is about cheating death, plain and simple.
We tend to avoid using that term, "death". As if we're afraid, as humans, that by invoking its name, it will come all the faster. We swerve away from listing it in our minds as among the possible consequences of getting a transplant, or not getting one in time. The docs are not so averse. They are blunt and up front about that possibility. They have to be; because it happens. From time to time.
Let me be blunt. Whenever I used the phrase in writing or conversation, "I don't have much time left," I wasn't kidding. As my PFTs plummeted and my CO2 levels climbed, I could feel death closing in. I had a bad scare one day in rehab about seven weeks ago when in the midst of CO2 induced tunnel-vision, I mistook Piper Beatty's figure as the Grim Reaper himself. I am not one to believe in the supernatural - but my heart skipped a beat.
Death also haunts us even once lungs come. Death is waiting in the operating room, in PACU, in ICU. It is to the surgeons credit that only 1% die on the operating table these days and fewer than 5% before leaving the hospital. Death waits for us even then, coming in the form of bacteria, viruses, fungii, parasites, rejection, or cancer. These target the immunosuppressed.
But the possibility of death is never far away. I have one grandmotherly friend in ICU sixty days now and has been shocked back to life a number of times. And another New York-to-Durham CFer, pre-tx, had a heart attack during routine PFTs....he never came back. And even though well into recovery, my friends in the hospital experience setbacks that still carry the risk of death, however slight. They are discouraged and they are scared. Typically, whatever problem it was eases and nobody thinks of death anymore, only recovery and life.
If you ever, at any point, thought, "Oh, of course Cris will get lungs!" then be reminded that there was never a guarantee and that the situation was not good. My lung volume was dwindling weekly. My CO2 retention was rising geometrically. I was one more clinic appointment away from being put on bipap. I was not taking it for granted that I'd live to see New Year's, though I like to believe I could have hung on for several months longer. I was worried. But always, always I had faith in Duke.
O Death please consider my age
Please don't take me at this stage!
Why do I write about this now, six weeks post-transplant? Should I not be celebrating every small gain, every longer stride, each and every sequential breath? Oh, I do!
But the fact remains that in the last four days, I've come across four notices of the passing of CFers. None of them I knew personally, all younger than me. Cystic Fibrosis still kills and it kills kids. I don't think any of these four even had obtained their 30th year! And I watch the behaviours of other young cystics - somewhat self-destructive behaviours - and I'm terrified for them. They've fought against this disease for so long, they've forgotten that death is a real possibility. All it'll take is the right massive chest infection or bowel blockage.
As due diligence toward a future project, I'm delving into the mass of CF-focused narrative literature. There's a certain foundational reading series that is "required" of the knowledgeable CFer and I've been lax on reading anything but the Cliff's Notes versions. Alex, The Life of a Child; Sick Girl Speaks; The Power of Two; Sixtyfive Roses...among others. I have noticed that for each book that talks of triumphing over CF, there is a book written by the survivors - and in these books death wins.
Of course, Death comes for us all. It's a given. But being 42 years old, and highly privileged to know even older CFers such as Jerry Cahill, Lynda Jensen, and Janine Ullyette, I want to strike out against Death with the battle cry that we should ALL live to enjoy achy joints and greying hair!
All of this makes me angry. And all I can do, right now, is channel that anger back into my efforts in rehab. I walk laps faster and faster, push through the pain. And when in my headphones "O Death" from O Brother, Where Art Thou? comes on, I intersperse my own lyric, whispering: "I beat death. I am beating death. I beat death. I am beating death..."
It is five o'clock in the morning on the 43rd day after my surgeons and I beat back death. As the snow falls, I am reminded that every coming dawn is another victory over death; that though for the rest of my life, I will be in a pitched battle against death, for each day I grow stronger, I push death just a little farther away.
O Death O Death
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
Won't you spare me over 'til another year?
January 20, 2014
Letting the Animal Out of the Ark - or - 40 Days, Part II
Post-transplant day 40. Letting the animal out of the ark.
People forget that once it stopped raining and the Ark ran aground, Noah didn't just pop the hatch and release the hounds. He waited 40 MORE days and nights to open the arc sending out doves each day to test the waters. Only when he had a sign of terra firma did he open the Ark.
In a way, I am an Ark, too, that had to contain just one animal - the essential me, the athletic and powerful me. Now, it took a long time to get to transplant. 71 days after moving, 33 days from being listed at Duke, 365 days from being listed in NY. This ark had to weather quite a storm - and did!
But now recovery has proven to be a waiting game. I am not allowed to lift above a certain weight until a certain amount of time has passed. Not allowed to drive until certain time has passed. Not allowed to jog or bicycle until certain time has passed. But those timelines haven't been explicitly spelled out to me. I did return to driving four weeks post, but only because I pushed. Purportedly, I should be able to return to light jogging at six weeks, though that's in dispute by some of the respiratory therapists. They seem to think 3 months.
Honestly, I couldn't wait that long. So today, 40 days from being stitched up and sent to ICU, I went outside and interspersed stretches of walking with jogging for about a mile.
This was horrible. My legs felt like wooden pegs with raw nerves shot throughout. I haven't felt this awkward while jogging since...ever. Even when I was a newcomer to the sport, it didn't feel like this. But the first short section was the worst, the second better, the third not as good, the fourth segment better than the previous ones still, the fifth hurt a lot more... so a rollercoaster of experiences in one short mile. But it felt good. Even the pain in the legs felt GOOD.
But I was well-pleased with my lungs, which expanded and expanded to the limits of my chest cavity. I didn't have coughing fits. I didn't have to hunch over and catch my breath or blow off CO2. I just breathed heavily and deeply. (I will need to learn to breathe more quickly, I think, and that will come in time.) It felt GOOD.
It was generally 30 seconds jogging, a couple minutes walking. And so on, for a 17:54 mile, my best pace in over a year.
So what should I say at rehab tomorrow? Put me on the treadmill and let me at it, because I handled it on the sidewalks today? Yes?
I didn't get around to putting my bicycle together this weekend, but could probably accomplish that mid-week. I'm itching to put in a few sidewalk miles.
Today, I was reminded that though it will be an uphill physical battle, I still have the willpower to engage in that struggle.
People forget that once it stopped raining and the Ark ran aground, Noah didn't just pop the hatch and release the hounds. He waited 40 MORE days and nights to open the arc sending out doves each day to test the waters. Only when he had a sign of terra firma did he open the Ark.
In a way, I am an Ark, too, that had to contain just one animal - the essential me, the athletic and powerful me. Now, it took a long time to get to transplant. 71 days after moving, 33 days from being listed at Duke, 365 days from being listed in NY. This ark had to weather quite a storm - and did!
But now recovery has proven to be a waiting game. I am not allowed to lift above a certain weight until a certain amount of time has passed. Not allowed to drive until certain time has passed. Not allowed to jog or bicycle until certain time has passed. But those timelines haven't been explicitly spelled out to me. I did return to driving four weeks post, but only because I pushed. Purportedly, I should be able to return to light jogging at six weeks, though that's in dispute by some of the respiratory therapists. They seem to think 3 months.
Honestly, I couldn't wait that long. So today, 40 days from being stitched up and sent to ICU, I went outside and interspersed stretches of walking with jogging for about a mile.
This was horrible. My legs felt like wooden pegs with raw nerves shot throughout. I haven't felt this awkward while jogging since...ever. Even when I was a newcomer to the sport, it didn't feel like this. But the first short section was the worst, the second better, the third not as good, the fourth segment better than the previous ones still, the fifth hurt a lot more... so a rollercoaster of experiences in one short mile. But it felt good. Even the pain in the legs felt GOOD.
But I was well-pleased with my lungs, which expanded and expanded to the limits of my chest cavity. I didn't have coughing fits. I didn't have to hunch over and catch my breath or blow off CO2. I just breathed heavily and deeply. (I will need to learn to breathe more quickly, I think, and that will come in time.) It felt GOOD.
It was generally 30 seconds jogging, a couple minutes walking. And so on, for a 17:54 mile, my best pace in over a year.
So what should I say at rehab tomorrow? Put me on the treadmill and let me at it, because I handled it on the sidewalks today? Yes?
I didn't get around to putting my bicycle together this weekend, but could probably accomplish that mid-week. I'm itching to put in a few sidewalk miles.
Today, I was reminded that though it will be an uphill physical battle, I still have the willpower to engage in that struggle.
January 18, 2014
Life After Breath, Part II
Concrete plans for the future start with picking an event. In the running community, there's an old saying: "What's the difference between a jogger and a runner? A bib." The implication is that the difference between wandering along aimlessly and having a goals is PURPOSE.
So the next question after "what now?" becomes: "What is my purpose?" I recently said to fellow blogger and lung recipient Piper Beatty that I can't go forward from this point living a life half-devoid of meaning, or engaging in activities that don't fulfill at least some good and beneficial purpose. I can use this as a razor to divide the jobs I should take from those I shouldn't, for instance. "Xmas windows, ok," I wrote. "Football halftime layouts, maybe not." The difference being in that the purpose of the latter is mindless filler*, the former makes millions of people smile each season with memories that last a lifetime.
(*Obviously, the NFL attempts to embue meaning to these half-time shows, as they mostly center around saluting the various heros of our society: the military, victims of various diseases, attack survivors, etc.)
So with Purpose in mind, I have already begun to find a strategy for charting my new life, now that I have breath. I've decided I can avoid the existential angst that comes with a blank calendar by...filling it in.
To that end, there are some very concrete events I can at least plan for and start to train for:
1) I signed up for the TD Bank 5 Boro bike tour, May 4th. PURPOSE: reconquer a long bike ride as soon as possible.
2) Talked over a possible timeline for moving back to New York with mom. Tentatively March 8th-9th. PURPOSE: to be able to plan out other events around this, events that take place in both Durham and New York.
3) Verbally committed to riding the 11th annual Long Reach Long Riders ride, July 12th-18th. PURPOSE: to get back to motorcycling in a quick, supported way. I can borrow one of two bikes, put my gear in the chase vehicle if needed, and have two dozen friends along to enjoy my return to biker status with.
4) At the same time as congratulating Piper Beatty on setting a new 7East floor lap record, vowed to beat it should I be placed there for recovery after my stomach surgery. Can I get a LINX, then get up and walk more than 5 miles? Oh, Piper sets the bar high! PURPOSE: well,....just to see if I can, actually....
5) And...designed a tattoo. See the pic. PURPOSE: to test if I have the kind of balls to actually go through with getting one. I've never had one and have some pretty strict rules about getting one, not to mention that tattoos are now verboten according to all transplant centers. And yet people do get them....
And there are other events I will call my coordinator about on Tuesday and push to get scheduled. I just loathe an unsecured, in-flux calendar. I want at least a tentative date scheduled for my consult with Dr Lin, for instance, and date(s) for my stomach surgery.
Tonight, I am reminded that we don't live our life successfully from moment to moment and in the dark - we need light to see by, and we bring the light by anticipating, planning, challenging ourselves, and committing.
So the next question after "what now?" becomes: "What is my purpose?" I recently said to fellow blogger and lung recipient Piper Beatty that I can't go forward from this point living a life half-devoid of meaning, or engaging in activities that don't fulfill at least some good and beneficial purpose. I can use this as a razor to divide the jobs I should take from those I shouldn't, for instance. "Xmas windows, ok," I wrote. "Football halftime layouts, maybe not." The difference being in that the purpose of the latter is mindless filler*, the former makes millions of people smile each season with memories that last a lifetime.
(*Obviously, the NFL attempts to embue meaning to these half-time shows, as they mostly center around saluting the various heros of our society: the military, victims of various diseases, attack survivors, etc.)
So with Purpose in mind, I have already begun to find a strategy for charting my new life, now that I have breath. I've decided I can avoid the existential angst that comes with a blank calendar by...filling it in.
To that end, there are some very concrete events I can at least plan for and start to train for:
1) I signed up for the TD Bank 5 Boro bike tour, May 4th. PURPOSE: reconquer a long bike ride as soon as possible.
2) Talked over a possible timeline for moving back to New York with mom. Tentatively March 8th-9th. PURPOSE: to be able to plan out other events around this, events that take place in both Durham and New York.
3) Verbally committed to riding the 11th annual Long Reach Long Riders ride, July 12th-18th. PURPOSE: to get back to motorcycling in a quick, supported way. I can borrow one of two bikes, put my gear in the chase vehicle if needed, and have two dozen friends along to enjoy my return to biker status with.
4) At the same time as congratulating Piper Beatty on setting a new 7East floor lap record, vowed to beat it should I be placed there for recovery after my stomach surgery. Can I get a LINX, then get up and walk more than 5 miles? Oh, Piper sets the bar high! PURPOSE: well,....just to see if I can, actually....
5) And...designed a tattoo. See the pic. PURPOSE: to test if I have the kind of balls to actually go through with getting one. I've never had one and have some pretty strict rules about getting one, not to mention that tattoos are now verboten according to all transplant centers. And yet people do get them....
And there are other events I will call my coordinator about on Tuesday and push to get scheduled. I just loathe an unsecured, in-flux calendar. I want at least a tentative date scheduled for my consult with Dr Lin, for instance, and date(s) for my stomach surgery.
Tonight, I am reminded that we don't live our life successfully from moment to moment and in the dark - we need light to see by, and we bring the light by anticipating, planning, challenging ourselves, and committing.
January 16, 2014
Life After Breath
Post-transplant day 37. Pulmonary rehab #16. Life After Breath.
I can breathe again.
So now....what?
So NOW what??
So! Now what?
Actors rehearse their lines with emphasis on different words to see how things play out; how they sound and feel, and which option works best for telling the tale. Similarly, up to now, I could mentally rehearse the possible paths in front of me, knowing I'd be heading down this fork or that fork and the more mental rehearsal of the possibilities, the better.
But I'm unprepared for the this advent: the end of the trail.
Let me explain. For over three years, this transplant journey has been about planning; about learning all the things that could happen, in addition to the things that WILL happen. But now almost all of those things have come to pass or have gone past me without becoming part of my tale. The waiting happened, the preparation, the pre-tx rehab, getting all my test numbers just right. Getting listed, and waiting and waiting and waiting. THE TRANSPLANT. The immediate followup care in the hospital and the few weeks after. The first month out bronch w/ biopsies. The rehab post-transplant.
But now those rehearsal options and known branches of the future have been lived or not lived and I am running out of path. My foresight is failing me. Now the path gets more diffuse, as my particular trail has been trodden by fewer people. From this point, the stories of those who have gone before me differentiate more and more, though admittedly retaining common themes. And I am perhaps even losing the trace of my own path. Now I'm just going on momentum.
Let's make this concrete. Today I've received several pieces of information that both clarify and obscure the future.
First, I thought I was doing well, but I found out that my bronch cultures are showing colonization with PA and Mycobacterium Chelonae. My first post-transplant bumps in the road. I'm super not thrilled about this. I don't know how virulent these are, whether I am a danger to my transplanted friends or not, whether these are a danger to me or not. The doctors don't seem to be in a panic - they haven't assigned any new meds. Reynolds says I'll likely remain colonized by PA the rest of my life and we will handle flareups when they happen. So...the days of my CF IVs aren't truly over, I guess. And the MC will be better defined by a chest CT not being done until the 21st. I'm told the MC is everywhere in the environment, even tap water, so it's no surprise to see it in my cultures. But I am dismayed.
Second, I had a chat with my case coordinator at my insurance. There are some good indicators toward me getting a LINX approved. When I mentioned that I've heard (from my surgeon) that Medicare has begun approving LINX and saw online from other patients that United HealthCare has begun approving LINX, she said that would be very helpful in getting my request approved. Even more reassuring is that Duke University Medical Center became in-network to my insurance (rather than PPO) on December 1st! That doesn't affect what I pay, but it does speak to the level of relationship between the two entities - the level of trust. I hope this works in my favor. But as of now, I have no knowledge of where in the filing/denial/appeals process we are or when my stomach surgery will be. There's no timeline here. I feel like I'm chasing a mirage that I'm required to catch.
Third, how well I am doing in regards to lung function and ability (if not in regards to lung cultures) was reinforced by a discussion with the respiratory therapist in charge of my chart at rehab. She won't or can't give me a timeline for when I can try jogging again. Some people say 6 weeks; she thinks 3 months. I've asked my coordintaor to ask my doctor and surgeon. I will follow their guidelines. But for right now, I have no charted future there.
She also wants to graduate me next Friday, on what will be my 21st session, as I'm clearly restored to a highly functional status. I'll spend my remaining days in Durham working out at the Center For Living, which has a larger gym, but which is not where friends Piper and Denise will be going. I am going to try to bargain for some extra time at Croisdaile Pulmonary Rehab, so as to have some overlap with the girls. I feel its important to support them in their first days back; but I also kind of need this for some kind of closure for myself. Purely selfish. A timeline is in place - but not one I'm real happy with - it will leave me without completion.
Of course, the girls themselves are another aspect of this existential crisis of unmapped, disappearing trail: Piper is waiting only for a couple of chest tubes to dry up, but there's no timetable in the world can predict when that will happen. Best case scenario, she'll get out of the hospital Monday and perhaps she'll be back to Rehab Wednesday. And Denise? I'm not sure what's keeping her in ICU, to be honest. She's walking laps there. Can't speak yet, but that's not a requirement to go to stepdown. Hell, patients have left stepdown and gone home (and back to rehab) with intact trachs! I suspect her stay in stepdown will be short, as the majority of issues that have kept her in ICU and would keep her in stepdown have cleared up. In fact, she's winning the chest-tube race against Piper, I believe. I must check on her personally tomorrow and get some answers from the nurse. I'd love to run into her attending or her surgeon and just press for a reasonable-case scenario type timeline.
Ah, but there's the rub. You can't put a timeline on ANY OF THIS. That's not how medicine works. Our bodies don't punch a timeclock, no matter how much the psyche DOES. Of late, I have been asked repeatedly when I'm coming back to New York, when I can return to work for these or those people.... I just don't know! I can't know! The best I can predict is 8-12 more weeks. Believe me, I would like nothing better than for LINX to be approved tomorrow, placed next week, me healed up fully and hitting FEV1 100% in a month, and Dr Reynolds saying I can move back at the end of February. But that's an illusory and distracting piece of wishful thinking - inventing a map in my head of the terrain I'd like to travel, rather than the terrain I will travel.
Tonight, I am reminded that I am not, in fact, clairvoyant and I'm subject to forces beyond my control; that "now what?" may have only the paltriest details, none of them concrete; that "now what?" may be more impenetrable haze than crystal ball. Tonight, I can only wait...and walk....and wish.
I can breathe again.
So now....what?
So NOW what??
So! Now what?
Actors rehearse their lines with emphasis on different words to see how things play out; how they sound and feel, and which option works best for telling the tale. Similarly, up to now, I could mentally rehearse the possible paths in front of me, knowing I'd be heading down this fork or that fork and the more mental rehearsal of the possibilities, the better.
But I'm unprepared for the this advent: the end of the trail.
Let me explain. For over three years, this transplant journey has been about planning; about learning all the things that could happen, in addition to the things that WILL happen. But now almost all of those things have come to pass or have gone past me without becoming part of my tale. The waiting happened, the preparation, the pre-tx rehab, getting all my test numbers just right. Getting listed, and waiting and waiting and waiting. THE TRANSPLANT. The immediate followup care in the hospital and the few weeks after. The first month out bronch w/ biopsies. The rehab post-transplant.
But now those rehearsal options and known branches of the future have been lived or not lived and I am running out of path. My foresight is failing me. Now the path gets more diffuse, as my particular trail has been trodden by fewer people. From this point, the stories of those who have gone before me differentiate more and more, though admittedly retaining common themes. And I am perhaps even losing the trace of my own path. Now I'm just going on momentum.
Let's make this concrete. Today I've received several pieces of information that both clarify and obscure the future.
First, I thought I was doing well, but I found out that my bronch cultures are showing colonization with PA and Mycobacterium Chelonae. My first post-transplant bumps in the road. I'm super not thrilled about this. I don't know how virulent these are, whether I am a danger to my transplanted friends or not, whether these are a danger to me or not. The doctors don't seem to be in a panic - they haven't assigned any new meds. Reynolds says I'll likely remain colonized by PA the rest of my life and we will handle flareups when they happen. So...the days of my CF IVs aren't truly over, I guess. And the MC will be better defined by a chest CT not being done until the 21st. I'm told the MC is everywhere in the environment, even tap water, so it's no surprise to see it in my cultures. But I am dismayed.
Second, I had a chat with my case coordinator at my insurance. There are some good indicators toward me getting a LINX approved. When I mentioned that I've heard (from my surgeon) that Medicare has begun approving LINX and saw online from other patients that United HealthCare has begun approving LINX, she said that would be very helpful in getting my request approved. Even more reassuring is that Duke University Medical Center became in-network to my insurance (rather than PPO) on December 1st! That doesn't affect what I pay, but it does speak to the level of relationship between the two entities - the level of trust. I hope this works in my favor. But as of now, I have no knowledge of where in the filing/denial/appeals process we are or when my stomach surgery will be. There's no timeline here. I feel like I'm chasing a mirage that I'm required to catch.
Third, how well I am doing in regards to lung function and ability (if not in regards to lung cultures) was reinforced by a discussion with the respiratory therapist in charge of my chart at rehab. She won't or can't give me a timeline for when I can try jogging again. Some people say 6 weeks; she thinks 3 months. I've asked my coordintaor to ask my doctor and surgeon. I will follow their guidelines. But for right now, I have no charted future there.
She also wants to graduate me next Friday, on what will be my 21st session, as I'm clearly restored to a highly functional status. I'll spend my remaining days in Durham working out at the Center For Living, which has a larger gym, but which is not where friends Piper and Denise will be going. I am going to try to bargain for some extra time at Croisdaile Pulmonary Rehab, so as to have some overlap with the girls. I feel its important to support them in their first days back; but I also kind of need this for some kind of closure for myself. Purely selfish. A timeline is in place - but not one I'm real happy with - it will leave me without completion.
Of course, the girls themselves are another aspect of this existential crisis of unmapped, disappearing trail: Piper is waiting only for a couple of chest tubes to dry up, but there's no timetable in the world can predict when that will happen. Best case scenario, she'll get out of the hospital Monday and perhaps she'll be back to Rehab Wednesday. And Denise? I'm not sure what's keeping her in ICU, to be honest. She's walking laps there. Can't speak yet, but that's not a requirement to go to stepdown. Hell, patients have left stepdown and gone home (and back to rehab) with intact trachs! I suspect her stay in stepdown will be short, as the majority of issues that have kept her in ICU and would keep her in stepdown have cleared up. In fact, she's winning the chest-tube race against Piper, I believe. I must check on her personally tomorrow and get some answers from the nurse. I'd love to run into her attending or her surgeon and just press for a reasonable-case scenario type timeline.
Ah, but there's the rub. You can't put a timeline on ANY OF THIS. That's not how medicine works. Our bodies don't punch a timeclock, no matter how much the psyche DOES. Of late, I have been asked repeatedly when I'm coming back to New York, when I can return to work for these or those people.... I just don't know! I can't know! The best I can predict is 8-12 more weeks. Believe me, I would like nothing better than for LINX to be approved tomorrow, placed next week, me healed up fully and hitting FEV1 100% in a month, and Dr Reynolds saying I can move back at the end of February. But that's an illusory and distracting piece of wishful thinking - inventing a map in my head of the terrain I'd like to travel, rather than the terrain I will travel.
Tonight, I am reminded that I am not, in fact, clairvoyant and I'm subject to forces beyond my control; that "now what?" may have only the paltriest details, none of them concrete; that "now what?" may be more impenetrable haze than crystal ball. Tonight, I can only wait...and walk....and wish.
January 14, 2014
A View From The (Pelvic) Bridge
Post-transplant day 34; pulmonary rehab #13.
I spend a lot of time looking at ceilings. ICU ceiling, stepdown ceiling, my bedroom ceiling, the very nice ceiling at rehab during floor exercises. That one reminds me of a gold and ebony river of tile, with fountains of light dotted throughout. I find peace and harmony in a well-installed ceiling. It's a matter of perspective, really.
Rehab is getting...repetitious. Which is to say I'm starting to find it boring; it has always been repetitious! But I am finding I'm using my boredom to attempt to go further, faster. The problem is, my body isn't quite building up in the strength department like it is in the speed and endurance departments. So I use the latter to fuel the former, distilling strength from dull repetition. Laps. Laps, laps, laps. Or, seen another way, winding up. (For what, I'm not sure.) It's a matter of perspective.
I'm wanting to do better, faster than I currently am; not just in rehab, but also with my PFT scores. If I don't blow the numbers I was expecting, I am disappointed. Today, I'd hoped to blow an 80% FEV1 and at least 70% FVC, but fell short of both. Never mind that my PFTs were technically up a couple of points from last week - I still failed to meet MY goal. In a similar vein, Dr. Reynolds added another med, a beta-blocker. This runs counter to my goal of shedding some of these meds that I'm assured are "temporary". I'm disappointed in myself somehow, in my body... Of course, people don't understand this failure. They see the PFTs, which are great for being five weeks out, and see an incredible success. They see the right medicine being prescribed for good reasons. But I want more. So victory looks like failure. It's all in how you see it, it's in what yardstick you're using.
But the change of view isn't always negative. I had a big shift in perspective Friday when I met my next surgeon, Dr. Hartwig, who will be performing a procedure to stop reflux. I had an image of a certain kind of surgeon, based on little (or perhaps was an amalgam of Drs Lin and Davis), and was prepared to have to fight tooth and nail to get him to agree to a LINX instead of doing a Nissen fundoplication. But the night before the meeting, I looked on the manufacturer's website for centers that do LINX. The only one listed for North Carolina? Duke. And the only surgeon listed? Dr. Matthew Hartwig.
I about fell out of my seat.
Then, the next morning, after talking to a PA, a tall late-30's-ish man in an impeccable suit and Italian shoes strode through the door. I had no idea why one of the hospital's lawyers needed to talk to me. "Hi. I'm Matt Hartwig."
Again. Butt, meet floor.
And...he's with me. From the outset. He heard of my interest, has performed the LINX installation many times, thinks its appropriate in my case, etc. His PA even had paperwork lined up to get a 3rd party advocate on the case to get this pushed through the inevitable insurance denials. Once again - shocked!
I walked out of Duke on Friday with a whole new appreciation of the lung transplant team. They are stern folks and unbending in some ways (if you have GERD, you WILL have an operation for that). But within a framework, and once through the looking glass of your transplant, the doctors and staff are willing to work with you as a partner, not just as a patient.
During floor class today, as I lay staring at that beautiful ceiling and grunting through ankle-weighted exercises and pelvic bridges, I thought over Mom's next adventure. She has been a good caregiver so far, but we both admit her load has been relatively light; the job frankly easy, as these things go. Now Mom is proposing to a close friend who also needs lungs that she come to Duke and Mom will be her primary caregiver and her husband, who must remain in Florida to keep working to keep the insurance, will be secondary. It's a good plan. Noble even. But I worry that Mom could be getting into a hell of which we have no idea. Even some of our long-term ICU stay acquaintances have had it easier than what COULD HAPPEN. Mom may be in for a massive shift of perspective, too.
Today, I am reminded that sometimes people aren't what I expect them to be; that there's a level of strength and compassion that bubbles to the surface when it's most needed. And that there's always more than one way to see things.
January 10, 2014
Survivor's Guilt
1 MONTH post-transplant; Pulmonary Rehab #12.
Today's bicycle and walk involved meditating on some sobering realities.
Recently, a friend sent me a statistic put out by the Cystic Fibrosis Foundation: that there are only 1300 of us CFers over 40 (out of 30,000 in the US). I really couldn't give credence to this. I doubt CFF stats as it is. It didn't jive. I know PLENTY of CFers over 40 - perhaps 2% of that statistic - 26 people or so. And I certainly don't know a proportionate number of CFers overall, 600, do I? But then, birds of a feather.... and I am moderator of a cystic fibrosis forum that attracts older patients as it is.... Hrm.
Then I got caught up in a FB thread in which the originator asked all CFers who could see the thread to post their age and location. There were hundreds of replies. And they're all kids. I mean...the vast majority are under 30.
There were only two replies from people older than I.
The median age of expected survival is now 41. But that's EXPECTED survival, not what's actually happening today. Could I really have survived so long as to be in such a small minority?
I think of my close friends. Piper Beatty would not have lived into her 30s without a lung transplant. Denise Horgan would not have made it to 40, though thank god we'll get to celebrate that milestone next November! Every single CFer I personally know and have met in person is younger than me except for Jerry Cahill, who is 56, and Lynda Jensen, who is 47. She's the only older CFer than me in rehab.
I begin to realize that I have survived not merely a lung transplant, but a deadly disease that takes my compatriots way too early, before they've lived even half their lives.
And speaking of lung transplant, there are some who haven't come back. And they're not in the hospital anymore either. There's only one conclusion. There are some pre-tx who come at 3:30 and have been doing so since long before me and will be there long after me, waiting for their call. They have antibody issues, or similar, and they wait and wait. You may recall me talking about the prophetic Weird Sisters encounter - they are among the ones I think of as the Stalled Ones. They are in a very, VERY real Purgatory. Why am I one of the lucky few to breeze in on a short timeline, get listed, get transplanted, recuperate well...?
And recuperation...I'm real glad to have set or equaled some kind of record for leaving the hospital (9 days), but Piper is now in week 3 of her recovery, Denise 9 days still in the ICU, and other less close friends (but still important to me)... Jeannette in ICU for over a month, Kyle still in stepdown almost two months out... Why didn't things go easier for them? Don't tell me it's because they weren't as prepared or as fit. Denise sure as hell was, but she got a rawer deal. Speedbumps appear out of nowhere that seem capricious and no more predicatable than the roll of a die.
How have I done so well where others have .... not?? My accomplishments are cruel laughter in the face of their miseries. Ironically, to play the full hand dealt me and give full due to my donor's gift means I can't just mask the good numbers or hide myself away. Though it means thumbing my nose at my less fortunate peers, I must be all I can be. Hell, this weekend I'll be spending most of my time drafting. FOR MONEY. Who the hell a month out of a death's-door operation goes back to work??
But maybe I can carry this forward, somehow press the powers that be to look into new avenues of treatment, so that a whole lot more of us will be above 40. For instance, I was wondering if, since GERD seems to affect newly transplanted lungs, might it not have had an impact on my old CF lungs? Is my GERD ultimately responsible for tipping the balance and overwhelming any gains made by exercise and antibiotics? If so, then should the standardized CF treatment look to test for GERD on a regular basis in adults with CF and when found, should we be doing fundos or LINX on CF patients before their lungs deteriorate??
Today, I am reminded I have a responsibility not only to my donor and myself to make the most of this gift, but to all my cystic brothers and sisters, now and to come, to try to find better treatments while we also search for a cure. I have to. Because I have survived.
January 9, 2014
The Thief of Time
Post-tx day 29, pulmonary rehab #10: The Thief of Time
Walking 30 minutes in rehab can be mind-numbing; your mind will wander. Today, I found myself thinking about stasis and sedation.
I've been reading a serial in Analog over the last few months called Lockstep. Even if the name itself didn't already resonate with the frame of activity at rehab, the core sci-fi concept of the story certainly has begun to resonate. A family invents a way to put people into stasis. By being asleep 30 years and awake one month in endless repetition, and by having sub-light starfaring technology, mankind finds 70,000 worlds "next door" and sets up a vast empire. In which people pass THIRTY YEARS in the course of "one night's sleep". Astonishing, when you think of it. Eerily, the last issue of the magazine features two more stories dependent upon stasis issues for the plot. In one, a crewman on a ship that will take 90 years to reach man's next homeworld finds he won't survive his turn in stasis. So he lives, from age 8 to 80 on board the ship, managing to survive to see the new world, but losing all his friends, lovers, and family along the way - not to death, but to TIME. To stasis.
I begin to mesh this idea with the reality I'm living. As I've told many, many transplant patients as they're about to go in, the hardest part of the whole process - the operation itself - is the easiest part for you; because it passes in a blink. Your mind is suspended - again, stasis. Sedation not only keeps you asleep, but erases a good part of any memory on either side of that sleep as well. ICU time becomes compressed because you spend most of it sedated.
And the same is true of other procedures I've experienced. Every time I go to Interventional Radiology, the procedure invariably takes longer than I remember, even when they're not putting me under, but rather just "making me comfortable." Although, my last trip to IR, they had to have put me under. For what I do remember are the clock times at the start and the end. What was subjectively 15 minutes took about 2.5 hours! Luckily, I was awake enough at the end to get the doctor to show me the 3" of catheter he retrieved from inside my jugular.
But that time is lost. And not in the way you lose time when you regularly sleep. When you sleep, your brain still tracks time - hence people's ability to wake up 5 minutes before the alarm. No, this time is LOST. When I say the interval passes in a blink, I mean it. To the mind, this is the stasis of sci-fi.
My latest example - and one where I now know sedation can last too long - is yesterday's bronch. When inpatient, they do bronchs unsedated, but they're only looking at sutures and sucking out excretions. When outpatient, the bronch also takes biopsies, so it is much longer and they want the patient sedated. I talked to the doctor pre-procedure about strategies for numbing my reactive airway (nebulized lidocaine, which seems to have worked well) and he mentioned that CF patients are usually resistant to sedation and they go a little heavier with us. So it went.
Problem is, though he had a hard time getting me fully asleep (told me by phone today that I was attempting to text and trying to call Walgreens about my IVs), he finally did and got the bronch done. What I could then tell him was that I think the sedation needs to be halted sooner and made lighter in general, for I lost THE ENTIRE EVENING. Even though I went to dinner with friends (Mom driving, of course), I remember only snippets and Mom has told me of other events of which I have no memory. I do NOT want to leave the bronch suite in that kind of mental suspension again! In this case, I feel I've actually been robbed of time. So we made notes and next month, we'll try going lighter, perhaps get me in earlier and keep me in recovery longer. I'd rather be somewhat awake mid-procedure than be that deep again - for a bronch. (Side note, it's apparently entirely normal to cough up blood clots the day after a bronch.)
My loss of time is minimal, of course, compared to Denise's. She has spent seven days now in ICU, most of it completely sedated. How much she'll remember is anyone's guess right now, but likely not more than a few minutes of it total. It will be a shock to her to find out how much time has passed when they can finally wake her up fully and keep her there. And given her racing heartrate when they try to bring her up, who knows how much time will be stolen from her mind, ultimately? [Next day edit: To be honest, I awoke this morning with a certain gut feeling - I think they'll be successful in getting her off the vent today.]
And so I keep an eye on the clock as I walk laps. Today, I am reminded that while time may be passing slowly during this boring activity, it is at least passing perceived, rather than being slipped away by the stasis of sedation.
Walking 30 minutes in rehab can be mind-numbing; your mind will wander. Today, I found myself thinking about stasis and sedation.
I've been reading a serial in Analog over the last few months called Lockstep. Even if the name itself didn't already resonate with the frame of activity at rehab, the core sci-fi concept of the story certainly has begun to resonate. A family invents a way to put people into stasis. By being asleep 30 years and awake one month in endless repetition, and by having sub-light starfaring technology, mankind finds 70,000 worlds "next door" and sets up a vast empire. In which people pass THIRTY YEARS in the course of "one night's sleep". Astonishing, when you think of it. Eerily, the last issue of the magazine features two more stories dependent upon stasis issues for the plot. In one, a crewman on a ship that will take 90 years to reach man's next homeworld finds he won't survive his turn in stasis. So he lives, from age 8 to 80 on board the ship, managing to survive to see the new world, but losing all his friends, lovers, and family along the way - not to death, but to TIME. To stasis.
I begin to mesh this idea with the reality I'm living. As I've told many, many transplant patients as they're about to go in, the hardest part of the whole process - the operation itself - is the easiest part for you; because it passes in a blink. Your mind is suspended - again, stasis. Sedation not only keeps you asleep, but erases a good part of any memory on either side of that sleep as well. ICU time becomes compressed because you spend most of it sedated.
And the same is true of other procedures I've experienced. Every time I go to Interventional Radiology, the procedure invariably takes longer than I remember, even when they're not putting me under, but rather just "making me comfortable." Although, my last trip to IR, they had to have put me under. For what I do remember are the clock times at the start and the end. What was subjectively 15 minutes took about 2.5 hours! Luckily, I was awake enough at the end to get the doctor to show me the 3" of catheter he retrieved from inside my jugular.
But that time is lost. And not in the way you lose time when you regularly sleep. When you sleep, your brain still tracks time - hence people's ability to wake up 5 minutes before the alarm. No, this time is LOST. When I say the interval passes in a blink, I mean it. To the mind, this is the stasis of sci-fi.
My latest example - and one where I now know sedation can last too long - is yesterday's bronch. When inpatient, they do bronchs unsedated, but they're only looking at sutures and sucking out excretions. When outpatient, the bronch also takes biopsies, so it is much longer and they want the patient sedated. I talked to the doctor pre-procedure about strategies for numbing my reactive airway (nebulized lidocaine, which seems to have worked well) and he mentioned that CF patients are usually resistant to sedation and they go a little heavier with us. So it went.
Problem is, though he had a hard time getting me fully asleep (told me by phone today that I was attempting to text and trying to call Walgreens about my IVs), he finally did and got the bronch done. What I could then tell him was that I think the sedation needs to be halted sooner and made lighter in general, for I lost THE ENTIRE EVENING. Even though I went to dinner with friends (Mom driving, of course), I remember only snippets and Mom has told me of other events of which I have no memory. I do NOT want to leave the bronch suite in that kind of mental suspension again! In this case, I feel I've actually been robbed of time. So we made notes and next month, we'll try going lighter, perhaps get me in earlier and keep me in recovery longer. I'd rather be somewhat awake mid-procedure than be that deep again - for a bronch. (Side note, it's apparently entirely normal to cough up blood clots the day after a bronch.)
My loss of time is minimal, of course, compared to Denise's. She has spent seven days now in ICU, most of it completely sedated. How much she'll remember is anyone's guess right now, but likely not more than a few minutes of it total. It will be a shock to her to find out how much time has passed when they can finally wake her up fully and keep her there. And given her racing heartrate when they try to bring her up, who knows how much time will be stolen from her mind, ultimately? [Next day edit: To be honest, I awoke this morning with a certain gut feeling - I think they'll be successful in getting her off the vent today.]
And so I keep an eye on the clock as I walk laps. Today, I am reminded that while time may be passing slowly during this boring activity, it is at least passing perceived, rather than being slipped away by the stasis of sedation.
January 2, 2014
The Walls
Pulmonary Rehab Day 39. All in all, it's just another brick in the wall.
It was a clinic day for a lot of us. The NY crew Denise Horgan, Piper Beatty, and myself) were all there at the same time. We even got a quick picture together. I think I will treasure this picture of us long after all of us are transplanted and back home. We're all smiling, though Denise's smile and mine can only be seen by our eyes; we're wearing masks. Piper has a commanding position from her wheelchair, while Denise wields her IV pole like Gandalf's staff. As for me, I have my hands on my hips in a "come at me bro" attitude.
But then we had our appointments and got a fresh look at things. Denise has hit a wall: waiting for a liver doc to weigh in on her case, an intractable chest infection that she's being re-admitted for, and still not listed. Piper has hit a wall: can't get in enough calories by mouth so she's sucking them in with a g-tube and she can't get enough CO2 out, so she'll be learning to sleep with a bipap to blow the CO2 out at night. As she puts it, "late-stage rejection both sucks and blows!"
As for me, my wall is also CO2, and a lung infection that, this time, doesn't even show up on the sputum cultures! The IVs have barely made a dent, but we'll continue them through Friday. Worse, my PFTs weren't great. My FEV1 hasn't budged, but my FVC has plummeted from 60% to 51%. Possibly the most telling is that while waiting to do the arterial blood gas, off oxygen, my sats hit 87% sitting quietly in just under 9 minutes. I've never dipped below 91% in 15 minutes in that situation.
Today, we each of us got a fresh hard look at the walls we face. But looking at that photo, I'm reminded of how tough we are. This is a picture of a crew that's going to fight to the bitter fucking end, one way or another. Never give up, never surrender. We will surmount any wall placed in our way.
It was a clinic day for a lot of us. The NY crew Denise Horgan, Piper Beatty, and myself) were all there at the same time. We even got a quick picture together. I think I will treasure this picture of us long after all of us are transplanted and back home. We're all smiling, though Denise's smile and mine can only be seen by our eyes; we're wearing masks. Piper has a commanding position from her wheelchair, while Denise wields her IV pole like Gandalf's staff. As for me, I have my hands on my hips in a "come at me bro" attitude.
But then we had our appointments and got a fresh look at things. Denise has hit a wall: waiting for a liver doc to weigh in on her case, an intractable chest infection that she's being re-admitted for, and still not listed. Piper has hit a wall: can't get in enough calories by mouth so she's sucking them in with a g-tube and she can't get enough CO2 out, so she'll be learning to sleep with a bipap to blow the CO2 out at night. As she puts it, "late-stage rejection both sucks and blows!"
As for me, my wall is also CO2, and a lung infection that, this time, doesn't even show up on the sputum cultures! The IVs have barely made a dent, but we'll continue them through Friday. Worse, my PFTs weren't great. My FEV1 hasn't budged, but my FVC has plummeted from 60% to 51%. Possibly the most telling is that while waiting to do the arterial blood gas, off oxygen, my sats hit 87% sitting quietly in just under 9 minutes. I've never dipped below 91% in 15 minutes in that situation.
Today, we each of us got a fresh hard look at the walls we face. But looking at that photo, I'm reminded of how tough we are. This is a picture of a crew that's going to fight to the bitter fucking end, one way or another. Never give up, never surrender. We will surmount any wall placed in our way.
December 27, 2013
Recovery is speeding up
Post-transplant day 17, rehab #5.
I'd had a fairly lame start to my recovery, I feel, especially with the low-energy, low-ability 1st day back at rehab on Saturday. Pain has stalked me in varying degrees from large to immense, with only a few respites. In these 17 days, I have been made to appreciate what a near-death experience transplant really is, even when it goes well.
But mid-week everything changed for the better. Perhaps it is the normal course of recovery, perhaps it was the spirit of Christmas, perhaps it was the vicarious excitement of the surprise visit Denise Horgan got from her siblings, or perhaps it was the relief from enormous worry when Piper Beatty finally got her call on Christmas morning, but I slept better Wednesday and Thursday nights than I have since before transplant. Not well, mind you, but finally a couple hours of deep sleep.
I've had more energy to visit friends in ICU and stepdown. I continue to worry over them and encourage them to push themselves. I've needed a little less napping. And in rehab, I'm getting a little bit more flexible and faster each time.
But today something REALLY clicked. My pain was down far enough to simply power through it. And in the middle of floor class, I started getting pings from my phone in rapid sequence: texts from a woman whom I'd left a mere 90 minutes earlier still moderately sedated and vented! Now I was getting my phone blown up by Piper! And...she was bragging about some test or other. Worries gone. Relief enormous.
The rest of rehab went swimmingly and for the first time since transplant was able to turn in better than a lap a minute during the walk. And I get to move to heavier weights on Monday. And on my SpiroPD, just now, I upped my FEV1 to 63%!
Today I am reminded that we are all in this together, quite literally. When my friends do well, I do well. And, I believe, vice versa.
I'd had a fairly lame start to my recovery, I feel, especially with the low-energy, low-ability 1st day back at rehab on Saturday. Pain has stalked me in varying degrees from large to immense, with only a few respites. In these 17 days, I have been made to appreciate what a near-death experience transplant really is, even when it goes well.
But mid-week everything changed for the better. Perhaps it is the normal course of recovery, perhaps it was the spirit of Christmas, perhaps it was the vicarious excitement of the surprise visit Denise Horgan got from her siblings, or perhaps it was the relief from enormous worry when Piper Beatty finally got her call on Christmas morning, but I slept better Wednesday and Thursday nights than I have since before transplant. Not well, mind you, but finally a couple hours of deep sleep.
I've had more energy to visit friends in ICU and stepdown. I continue to worry over them and encourage them to push themselves. I've needed a little less napping. And in rehab, I'm getting a little bit more flexible and faster each time.
But today something REALLY clicked. My pain was down far enough to simply power through it. And in the middle of floor class, I started getting pings from my phone in rapid sequence: texts from a woman whom I'd left a mere 90 minutes earlier still moderately sedated and vented! Now I was getting my phone blown up by Piper! And...she was bragging about some test or other. Worries gone. Relief enormous.
The rest of rehab went swimmingly and for the first time since transplant was able to turn in better than a lap a minute during the walk. And I get to move to heavier weights on Monday. And on my SpiroPD, just now, I upped my FEV1 to 63%!
Today I am reminded that we are all in this together, quite literally. When my friends do well, I do well. And, I believe, vice versa.
December 23, 2013
Recovery begins in earnest
Post-tx Pulmonary Rehab Day 2:
Though I would like recovery to be brief, it is more likely to be a long haul. Baby steps. OK. Today's was a full rehab session, with all activities. And though I'd like to describe my pain and weakness in flowery ways, or perhaps just as literotically elucidate my strengths, I'll do neither. Rather, I look around and take stock.
Today's floor class was quite crowded, with more than a dozen people. Three of us (including myself) in chairs, because we're too weak to be on the floor just yet; me squirming against a heated backpad in hopes of some relief. I look around carefully and note those ahead of me on the path, who are farther along in recovery and doing well and spurring me forward. I see those who are behind me on the path, still on oxygen, struggling - yet physically stronger than I am at the moment.
Today, one participant lay beside me on her yoga mat who is quite uniquely both ahead of and behind me on the road to transplant. I've relied on her advice and survived - no, knocked this out of the ballpark - because of it. I only hope she'll take what advice I can give her about the immediate future. Oracle-like, she revealed the outlines of my odyssey. But now I can fill in the details for her. Thank you, Piper Beatty.
Lifting hand weights and doing leg raises with my comrade today reminded me of the constant state of flux we're in, where nothing can be taken for granted. Two weeks ago today I could have written in my own chart "here today, transplanted tomorrow". Tonight, I wish that for her.
Though I would like recovery to be brief, it is more likely to be a long haul. Baby steps. OK. Today's was a full rehab session, with all activities. And though I'd like to describe my pain and weakness in flowery ways, or perhaps just as literotically elucidate my strengths, I'll do neither. Rather, I look around and take stock.
Today's floor class was quite crowded, with more than a dozen people. Three of us (including myself) in chairs, because we're too weak to be on the floor just yet; me squirming against a heated backpad in hopes of some relief. I look around carefully and note those ahead of me on the path, who are farther along in recovery and doing well and spurring me forward. I see those who are behind me on the path, still on oxygen, struggling - yet physically stronger than I am at the moment.
Today, one participant lay beside me on her yoga mat who is quite uniquely both ahead of and behind me on the road to transplant. I've relied on her advice and survived - no, knocked this out of the ballpark - because of it. I only hope she'll take what advice I can give her about the immediate future. Oracle-like, she revealed the outlines of my odyssey. But now I can fill in the details for her. Thank you, Piper Beatty.
Lifting hand weights and doing leg raises with my comrade today reminded me of the constant state of flux we're in, where nothing can be taken for granted. Two weeks ago today I could have written in my own chart "here today, transplanted tomorrow". Tonight, I wish that for her.
December 19, 2013
Contemplating escape
Originally posted from my iPad...
6 am. Two failed ABGs. Now is about the point I begin to contemplate escaping from this gulag. No torture-ridden CIA hellhole could hold the wonders I've seen, nor the skills of the inquisitioners match the doctors' and nurses'.
I consider tunneling my way out, but have no equipment sturdier than my iPad with which to dig. Camouflage techniques are right out, as that would require a shower, shave, and obtaining scrubs.
Perhaps I can distract the guards by remotely triggering another patient's call button and then simply walking out. Ah, but what chance have I with my painfully slow gait, when one guard can notice me on her coffee break rounding the corner, nudge another guard 10 minutes later and say, "Hey, do you think he's making a break for it?"
6 am. Two failed ABGs. Now is about the point I begin to contemplate escaping from this gulag. No torture-ridden CIA hellhole could hold the wonders I've seen, nor the skills of the inquisitioners match the doctors' and nurses'.
I consider tunneling my way out, but have no equipment sturdier than my iPad with which to dig. Camouflage techniques are right out, as that would require a shower, shave, and obtaining scrubs.
Perhaps I can distract the guards by remotely triggering another patient's call button and then simply walking out. Ah, but what chance have I with my painfully slow gait, when one guard can notice me on her coffee break rounding the corner, nudge another guard 10 minutes later and say, "Hey, do you think he's making a break for it?"
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