Blake died last weekend. He had a fidgety way about him, a slight bounce in his posture, even when standing in one place. I always imagined it was his unfettered energy that powered the Freedom Driver he wore; of course the reality was the opposite.
He stuck his head in my room the day before I had my own TAH implanted. Five years older than me, his ever-present Redskins ball cap bobbing almost imperceptibly above his short frame. Where Perry was calm and quiet, Blake talked to everyone, his optimism and energy infectious. “You’ll get used to it,” he said, grabbing his canulas, as I would later grab my own out of habit. I believe it’s an unconscious gesture that reassures us the thing stitched into our abdomen, attached to the device in our chests, is still there, still working.
Blake should know. He lived with the TAH twice as long as I did. The waiting list evaded him for a long time because he had liver issues that made him a bad candidate. Once he was listed, he got a heart. But his body rebelled against one of the anti-rejection medications, and he never made it home to his wife and teen-aged twins.
He’s the fifth fellow TAH patient and the fourth friend with a TAH that I’ve lost this year. I’m glad the boys didn’t know him- I don’t know how much more of this stuff they can take.
Monday, I joined a new committee at my transplant center, focused on easing the hospital stay of long term device and pre-transplant patients, like myself earlier this year. I’ve become more involved in the HCMA this week – the patient advocate organization that led me to Boston and guided us through some very tough decisions. I’m about to start interacting with newly diagnosed HCM patients. Both of these things are long overdue, and terrifying.
Brian, a transplant buddy and friend of Blake’s, is also on the new committee.
“You know that doing all this means we’re going to get close to more people that we’ll lose,” he said as we were leaving the meeting, both mourning the news of Blake’s passing.
“I don’t have a choice,” I said. “Perry and I had a deal and I’m keeping it. Period.”
I’ve learned this – being chronically sick with heart disease thrusts you into relationships with people who also play knock-and-run at Death’s door. But He’s ancient and wise to that game. He catches people who you foolishly imagined were too quick and clever for him. I recite their names often. Joe. Dottie. Perry. Jamie. John.
Blake.
Death has become a bit of an invisible friend, and He’s no longer an enemy to me. It’s nothing personal, He’s just doing his job. But His constant brooding in the corner is intimidating nonetheless.
My doc says I have survivor’s guilt. Maybe? I don’t know what that looks like so I won’t argue. What I do know is that I have to find some way to withstand and absorb even more loss than I already have. I owe it to my donor, to Perry’s sisters and mother (especially), Jamie’s little girls. Jon’s wife and girls, Blake’s wife and kids. And I owe it to my own.
I’m not a courageous person, though people often insist that I am. My fears are many. I suspect that exposing myself to more death and loss will take a measure of courage that I’ve not yet discovered. I hope it’s inside me somewhere, or that I can draw it from my family and friends.
For Blake. Clear skies to you, my friend.
“Empty promises, etched in stone, are scattered by the wind to places I have known,
All the burning lamps by the window pane, lit for their return, but they never came,
I lose myself in deep regret, still I hear a voice that I can’t forget.
It says we will run where roses grow, our feet unbound at last,
Laugh as morning dawns; the night forever passed,
See the face of glory, feel the river flow,
Hear the voice of God and run where roses grow.”
(Glenn Kaiser/Rez Band)
Saturday, December 10, 2016
Sunday, December 4, 2016
One Foot In Front Of The Other
Until there's more to report on the rest of the family's medical issues, I'll forge ahead with recovery updates and observations.
Way back in the early days of News of My Demise, I spent considerable time trying to temper expectations. As most of you well know by now, movie and tv show transplants resemble real life ones in only a few respects; there are in fact, surgeons involved, and they do in fact put a recently deceased person's heart into someone who needs a heart to live. And that's about the end of the similarities. There is never an episode where the patient returns to spend two weeks in the hospital, being injected with medications derived from horse serum, or frantic attempts to adjust medications because the patient is toxic.
Rejection is a big ugly monster that rears its head from time to time for most people. While focusing all my energy on trying to live and enjoy a healthy life, there is an underlying dread that this monster will appear to disrupt that life. It's done that three times already, though the rejection has been mild. We all fear the biopsy that shows acute rejection, because means you're back in the ring, already bloodied and stumbling to keep your feet under you. The process of getting a heart was long, painful, scary, and riddled with loss (at least for me and my family).
Though there will be no more moving about from place to place, trying to get listed, trying to navigate the mess of red tape that comes with HCM, the thought of being separated from my family for even a few weeks, or having to endure another transplant surgery, is harrowing at best. I try not to borrow trouble, but the need for re-transplantation is a reality for some people. I don't think about it much because I'm too busy, but it's a dread that lurks there. Biopsy days are stressful, never knowing if they'll end with me back on the HVIC getting blasted with steroids that take weeks and months to exit my system. But the last three have been mostly good. My labs have looked good. And I feel good. And that's the best I could wish for right now.
I'll just say it, because those of you who are on the front side of this thing need to be told - recovery is HARD. It's hard to control your emotions, not just because of the steroids, but because there are so many things swirling around in your head. For me, an intense pressure and self-expectation to make every day count, even if I'm just vegging on the couch - to really, really enjoy just relaxing. Trying to figure out what to do now that I can actually do things. I'm compelled to write, record songs, spend more time creating in the kitchen, start new projects with the kids, exercise, train the dog, renovate our house...and that's only part of the list. I feel pulled in a dozen directions, between social life, needed time alone, and needing to be productive. I want to work and earn a legitimate income, but I have to be in control of my environment as much as possible, so those prospects aren't great, which is frustrating. Mixed emotions, more energy than time, more ideas than resources allow for.
It also hurts. When people ask how I am, I don't regale them with every ache and pain. It's nice to finally be able to say, "I'm good!" and mean it. Because overall, I am. But my incision still hurts as I adjust to a lower dose of steroids. The bend of my hip/groin is swollen on one side from the bypass during surgery, and by the end of the day the pain can be intense. I have neuropathy in both feet and in my pinkie and ring fingers on both hands (meaning, they're numb, and often throb if I use them too much). I still get overwhelmed at times by too much noise or too many people. All this will go away, and they're minor issues compared to my pre-transplant problems.
But you need to know, it's a slow process, much like an uphill roller coaster - big upward climbs, interspersed with tumbles into the valley. And the valley can become frustrating, even depressing. It's hard to adjust. I saw my primary care Doc this week. We have a good relationship, and he's been tracking with our family for the last three years as we've gone through all of this. He asked pointed questions about depression and how I'm handling all this. He's not a therapist, but after a ten minute discussion, he's convinced I have an adjustment disorder. People who have been deployed know this better than I, but being gone from home for an extended period of time, then injecting yourself back into that environment is jarring. Life has gone on, things have progressed, changed, maybe not to your liking. Kids grow up - a lot can happen in six months. Trying to find your groove is awkward, and you feel like you're in the way a lot. And being emotionally amped up doesn't help. You tend to think the worst of yourself.
My advice - stay away from people who like to point out character flaws, or criticize a lot. Facebook arguments are a bad thing. There's a time and a place to hear that you're selfish, or ungrateful, but this isn't that time. Everything is amplified, and it's difficult to take criticism in proportion. You just beat yourself up instead of using it to better yourself. I'm supposed to see a therapist after the holiday. My doc, and one of my transplant buddies that I confide in a lot, think I have a touch of PTSD from spending so much time in the hospital (we calculate an entire year, cumulatively, over the last two years). I've had awful nightmares about Perry and Jamie that jolt me awake some nights, sweating, crying...it makes me not want to sleep at all sometimes. I guess survivor's guilt is a real thing, I just didn't realize it would manifest itself in dreams. It's not uncommon, but I want to get past it. Perry would be really angry with me for feeling guilty for even a second, so I have to get past it - it's not fair to him or Jamie, or John, or Dottie, or any of the other people I've lost along the way. Being around other friends who've survived helps a lot, because they get it, and don't try to tell you it's not your fault, because they know that facts don't really make you feel better about it.
All of this stuff has a shelf life. I sat with a guy who's twenty-six years out from transplant at a meeting Wednesday night. I doubt he's still dealing with any of this stuff. But it's part of the aftermath, and it's not easy, and there's not really a pill to fix any of it To me, everything that came before, though not easy, wasn't really a choice. The alternative was death, so most people will do whatever it takes to stay alive. That's not courage on the part of the patient - it's survival instinct. This part? The aftermath? This is when your mettle is tested. Because the stakes aren't nearly as high. You can choose not to get over this stuff. You can sit around in depression and bitterness and guilt. And you can stay that way the rest of your life, and some people do. The real test of courage is to get up in the morning and despite your frailties and flaws, honor the person who gave you the gift of being able to have another morning - and the people who got you through the ordeal when they were well within their rights to give up on you. Any foolish notion of doing it with grace or dignity only makes it harder, because it's messy, and embarrassing, and awkward. It's a lot of stumbling around and re-learning who you are.
I've never been so unsure of myself - it's like starting from scratch. Surround yourself with people who are patient and full of grace, because you will have no patience or grace with yourself for awhile. I don't know if I have enough courage to do it. I'm trying, but it's harder than living with HCM or living in the hospital. That's the real surprise. It's like someone keeps moving the finish line ever farther into the distance. So all you can do is keep running.
Way back in the early days of News of My Demise, I spent considerable time trying to temper expectations. As most of you well know by now, movie and tv show transplants resemble real life ones in only a few respects; there are in fact, surgeons involved, and they do in fact put a recently deceased person's heart into someone who needs a heart to live. And that's about the end of the similarities. There is never an episode where the patient returns to spend two weeks in the hospital, being injected with medications derived from horse serum, or frantic attempts to adjust medications because the patient is toxic.
Rejection is a big ugly monster that rears its head from time to time for most people. While focusing all my energy on trying to live and enjoy a healthy life, there is an underlying dread that this monster will appear to disrupt that life. It's done that three times already, though the rejection has been mild. We all fear the biopsy that shows acute rejection, because means you're back in the ring, already bloodied and stumbling to keep your feet under you. The process of getting a heart was long, painful, scary, and riddled with loss (at least for me and my family).
Though there will be no more moving about from place to place, trying to get listed, trying to navigate the mess of red tape that comes with HCM, the thought of being separated from my family for even a few weeks, or having to endure another transplant surgery, is harrowing at best. I try not to borrow trouble, but the need for re-transplantation is a reality for some people. I don't think about it much because I'm too busy, but it's a dread that lurks there. Biopsy days are stressful, never knowing if they'll end with me back on the HVIC getting blasted with steroids that take weeks and months to exit my system. But the last three have been mostly good. My labs have looked good. And I feel good. And that's the best I could wish for right now.
I'll just say it, because those of you who are on the front side of this thing need to be told - recovery is HARD. It's hard to control your emotions, not just because of the steroids, but because there are so many things swirling around in your head. For me, an intense pressure and self-expectation to make every day count, even if I'm just vegging on the couch - to really, really enjoy just relaxing. Trying to figure out what to do now that I can actually do things. I'm compelled to write, record songs, spend more time creating in the kitchen, start new projects with the kids, exercise, train the dog, renovate our house...and that's only part of the list. I feel pulled in a dozen directions, between social life, needed time alone, and needing to be productive. I want to work and earn a legitimate income, but I have to be in control of my environment as much as possible, so those prospects aren't great, which is frustrating. Mixed emotions, more energy than time, more ideas than resources allow for.
It also hurts. When people ask how I am, I don't regale them with every ache and pain. It's nice to finally be able to say, "I'm good!" and mean it. Because overall, I am. But my incision still hurts as I adjust to a lower dose of steroids. The bend of my hip/groin is swollen on one side from the bypass during surgery, and by the end of the day the pain can be intense. I have neuropathy in both feet and in my pinkie and ring fingers on both hands (meaning, they're numb, and often throb if I use them too much). I still get overwhelmed at times by too much noise or too many people. All this will go away, and they're minor issues compared to my pre-transplant problems.
But you need to know, it's a slow process, much like an uphill roller coaster - big upward climbs, interspersed with tumbles into the valley. And the valley can become frustrating, even depressing. It's hard to adjust. I saw my primary care Doc this week. We have a good relationship, and he's been tracking with our family for the last three years as we've gone through all of this. He asked pointed questions about depression and how I'm handling all this. He's not a therapist, but after a ten minute discussion, he's convinced I have an adjustment disorder. People who have been deployed know this better than I, but being gone from home for an extended period of time, then injecting yourself back into that environment is jarring. Life has gone on, things have progressed, changed, maybe not to your liking. Kids grow up - a lot can happen in six months. Trying to find your groove is awkward, and you feel like you're in the way a lot. And being emotionally amped up doesn't help. You tend to think the worst of yourself.
My advice - stay away from people who like to point out character flaws, or criticize a lot. Facebook arguments are a bad thing. There's a time and a place to hear that you're selfish, or ungrateful, but this isn't that time. Everything is amplified, and it's difficult to take criticism in proportion. You just beat yourself up instead of using it to better yourself. I'm supposed to see a therapist after the holiday. My doc, and one of my transplant buddies that I confide in a lot, think I have a touch of PTSD from spending so much time in the hospital (we calculate an entire year, cumulatively, over the last two years). I've had awful nightmares about Perry and Jamie that jolt me awake some nights, sweating, crying...it makes me not want to sleep at all sometimes. I guess survivor's guilt is a real thing, I just didn't realize it would manifest itself in dreams. It's not uncommon, but I want to get past it. Perry would be really angry with me for feeling guilty for even a second, so I have to get past it - it's not fair to him or Jamie, or John, or Dottie, or any of the other people I've lost along the way. Being around other friends who've survived helps a lot, because they get it, and don't try to tell you it's not your fault, because they know that facts don't really make you feel better about it.
All of this stuff has a shelf life. I sat with a guy who's twenty-six years out from transplant at a meeting Wednesday night. I doubt he's still dealing with any of this stuff. But it's part of the aftermath, and it's not easy, and there's not really a pill to fix any of it To me, everything that came before, though not easy, wasn't really a choice. The alternative was death, so most people will do whatever it takes to stay alive. That's not courage on the part of the patient - it's survival instinct. This part? The aftermath? This is when your mettle is tested. Because the stakes aren't nearly as high. You can choose not to get over this stuff. You can sit around in depression and bitterness and guilt. And you can stay that way the rest of your life, and some people do. The real test of courage is to get up in the morning and despite your frailties and flaws, honor the person who gave you the gift of being able to have another morning - and the people who got you through the ordeal when they were well within their rights to give up on you. Any foolish notion of doing it with grace or dignity only makes it harder, because it's messy, and embarrassing, and awkward. It's a lot of stumbling around and re-learning who you are.
I've never been so unsure of myself - it's like starting from scratch. Surround yourself with people who are patient and full of grace, because you will have no patience or grace with yourself for awhile. I don't know if I have enough courage to do it. I'm trying, but it's harder than living with HCM or living in the hospital. That's the real surprise. It's like someone keeps moving the finish line ever farther into the distance. So all you can do is keep running.
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