At 29 (in 1998), I was diagnosed with a chronic, congenital heart disease known as HypertrophicCardiomyopathy (HCM). It’s a typically sneaky and undiagnosed disease that…well, I’ll let the HCM Guru himself, Dr. Marty Maron (HCM Center, Tufts Med Center, Boston, MA) explain it:
My condition worsened until my heart couldn’t support my other organs.
Rather than suffer multiple organ failure, I chose to be implanted with a Total Artificial Heart (TAH) in August of 2015.
After about five weeks, I was transferred from the cumbersome hospital driver/pump for
the heart to a smaller and portable pump known as the Freedom Driver.
I lived as a patient in residence on the Heart and Vascular Cardiology unit at Penn State Hershey Medical Center while awaiting a heart transplant from January 16th until early June of 2016. On May 23rd, 2016, after being listed for over four years, I finally received a donor heart. It’s the ultimate gift and responsibility, and though there are still many challenges, I look forward to a fuller life because of the kindness of a stranger. My journey is chronicled below, in all it’s gory detail. My hope is that it will provide some solace and encouragement to those who are facing similar challenges and seemingly insurmountable obstacles. I call it “News of My Demise,” and it’s available through Create Space, Amazon (also on Kindle), Goodreads, and Barnes & Nobles
So. It’s January 16th. The eve of my 46th birthday. It was one year ago today that my 17 year long battle with HCM came to a head. I’d already taken all the medications I could, prompting my Arkansas cardiologist to send me to Boston back in 2010. The MRI revealed massive muscle death and rapid progression of the disease. We’d moved all over the New England area so I could be listed in Boston, and settled in Springfield, MA only to find out 7 months later that I was being dropped from the program. We’d moved again, this time to Lebanon, PA. I’d done my time in and out of the hospital with swans caths, every 6 weeks for 3 1/2 years. “Frequent Flyer,” they called me. I’d learned that my other organs were failing because my burned out heart couldn’t support them anymore. I’d had an artificial heart (TAH) implanted to prolong my life, spent two months recovering, and had gone home to wait for a real one. Then January 16th came.
I was standing in our sun room, touching up some trim. We’d been in the process of fixing small problems and aesthetics with our 1920’s home since we’d moved in. It was early and only Brennan and I were awake. I remember looking out the window to the street and thinking my glasses were crooked, because everything had that strange out-of-focus look, like when one lens has fallen out of the frame. As I turned to dip my brush, my stomach lurched and the whole room turned sideways. It started jittering as it flipped completely upside down, then at a new cock-eyed angle. My stomach continued to lurch, and I was just able to yell for Brennan to get Christie before I started vomiting. I’d not eaten, so there was nothing to expel, but I began to dry heave and could barely catch my breath in between. I fought not to black out.
I really thought it was over. Perry had been diagnosed with Lymphoma just five days prior, and the prognosis was grim. I figured it was my turn now. The thought crossed my mind that at least the HCM didn’t get me. At least I got rid of it before it killed me itself. The TAH pump was silent and consistent – no alarms, no abnormal rhythms. It must be the artificial device, in my chest, I thought. It’s malfunctioning.
I managed to stay alert during the ambulance ride. Rich saved my life by giving the paramedics a quick tutorial about the TAH and my meds, which kept them from injecting me with things that would have killed me. At the hospital, I was reconnected to the larger TAH pump. The vertigo and sick stomach subsided. No one understood what had happened. And it scared us all. So much so, that we all agreed it was best for me to just stay in the hospital until I got a heart or the worst happened. I knew the odds of getting one with my blood type and size were not good. I was following in Perry’s steps, moving into the HVIC. Future uncertain.
It was on this day. You all know the rest of the story. Life in the hospital, the transplant, the recovery. There’s so much more of this story that I’ve not told here, and some of it I never will. There are experiences and conversations that I consider sacred, and to share them with others would make them less so. I’m beginning to write a book, to chronicle my battle with HCM and UNOS, to give others who will walk this road some insight and hope. Right now, my life is filling back up, and it surprisingly looks much like it did when this whole thing started. Though I’m a father now, and I live across the country, I’m already involved in music endeavors, I’m volunteering with Gift of Life, the HCMA, the Bodhana Group…I’m interacting with people who are on the road I just walked. I promised Perry I would, but I also can’t think of anything else I’d rather do.
But this part of the experience has come to an end for me. I can’t continue to dwell on the past and brood about whatever complications exist with recovery. To actually recover, I have to throw myself into life again, with my family, my writing, my studies, my volunteer efforts. These things are the way forward, while this blog looks back, in a sense.
As it turns out, the News of My Demise has, in fact, been greatly exaggerated. We did it, and the other side is both wonderful and terrible. There are too many faces that crowd my mind, people I’ve lost, people without whom I wouldn’t have made it. There are too many things I want to do, but I still lack the stamina. That will change.
Thanks for taking this journey with me. It has been long, longer than the life of the blog. I wish I had some big conclusion or message to end with but the truth is, I still don’t understand any of this, really. Life is what you make it? Believe in yourself? It’s all too trite and can’t encompass or explain what has happened and what it all means. I guess that’s up to each of us to decide for ourselves. For me, it comes down to living life instead of trying to understand it, ascribing meaning where we can find it, and soaking in as much as we can while we’re here. I think it’s probably the only way to honor the dead and to make the journey count for something. So I’m going to try.
The other unsung heroes of this story are my sons. In most situations like this, the kids are just along for the ride, in a sense, quiet observers, processing the things happening around them, and likely frustrated because they can’t affect any of them.
Neither of my boys remember me being normal. Since Rich was old enough to walk, he was sent scurrying here and there to retrieve my phone, wallet, the tv remote, a glass of water…anything to keep from having to stand and sit or walk too much. The same is true for Brennan, but I was even sicker by the time he came along. He mainly remembers living in Bentonville, AR, in the Ozarks. I’m sure to a four year old I seemed fine. It was a time of stability. Rich in public school, Christie in nursing school, me with a clean slate and no demands beyond keeping the household together so mom could concentrate on school. Our life was the most normal it’s ever been during that time. Grocery shopping, the gym, (the treadmill for me, a toddlers class for him), library story-time and lunch in the cafe on Wednesdays – our favorite – and Fridays home with mom so I could be at Rich’s school and catch up on Watchdog business (the dad’s volunteer program I supervised).
We started homeschooling in anticipation of possibly travel nursing when Christie graduated. We liked the idea of seeing the country on someone else’s dime, and though it might be a good experience for the kids. We never dreamed we’d be forced to do it because I needed a transplant. But we knew we’d have to homeschool, so we tried it. We fell into a different schedule, but life was still normal. We made new homeschooling friends, Christie was working, we were looking at homes to buy. The kids were happy, we were excited about the future.
In March of 2010 I was told I needed a transplant. I agonized on the plane trip back from Boston. How would I tell my friends? My parents? And trying to work out how to explain a transplant to the kids knotted my stomach. I knew my kids. They were going to ask questions, and lots of them. We determined not to scare them, but also not to lie to them.
“Will you die if you don’t get a heart?”
“Where does the heart come from?”
“How long will you live after you get a heart?”
“What happens if you die?”
“When you get a new heart, will you still remember us?”
“What about the family of the person who give you a heart?”
They wanted numbers. Statistic. Details we weren’t yet processing ourselves. Parents joke about not having an instruction manual for kids. We were so far beyond that. They took everything in without tears. Rich immediately wanted to know what the plan was.
We desperately sought for a heart program in the mid, or deep-south that could both treat and list someone with HCM. The disease makes up 5% of all heart disease. Transplants are required for survival in .02% of that 5%. St. Louis purported to have an HCM doc and a good transplant program. Despite the supposed HCM doc being ignorant of the disease, the transplant doc agreed to list me. This required multiple trips back and fort to St. Louis. I figure we dragged the kids back and forth, six hours both ways, about five or six times. They never complained, taking the long trips in stride. We tried to make trips fun for them, spending an afternoon at the children’s museum or a local zoo. When we realized the transplant doc had no experience or plan to deal with the Draconian UNOS regulations, we abandoned that track.
So, another difficult conversation. We had to move. Far away. They wouldn’t get to see Gramsy and Pops, Nana and PaPaw very often. Their friends, ever again. There were tearful goodbyes, but no tantrums, no resentment. They understood it was because of me, and they did what had to be done.
Then came the travelling. Every three months another car trip. They worked hard, packing, unpacking, sharing small rooms in apartments and old houses, making friends they’d leave before the friendships had time to take root. We tried to maintain those, but it was hard. They struggling with crates and suitcases and backpacks, up stairs and elevators, helping Christie make it all fit. No complaining. They saw the big picture.
I’ll never forget New Year’s evening of 2012. We’d left from a visit in Arkansas to Christie’s new assignment in New Hampshire. They unloaded the van into the new apartment, including Christmas gifts, opened but not yet played with. We went to eat and I lapsed into severe a-fib, landing me in the ER. We’d been on the road for 10 hours that day. We couldn’t leave them in an unfamiliar apartment complex (they were too young anyway), and Christie couldn’t leave me; a-fib rendered me nearly speechless and breathless.
It’s burned into my brain, the image of them and Christie, curled together awkwardly in two metal folding chairs, sleeping restlessly until I was cardioverted 8 hours later. We repeated the same scene three nights later. My profuse apologies were always met with, “It’s not your fault,” or, “it’s just part of it, dad.”
We dragged them back and forth to Boston, where they say in the clinic waiting room for hours on end. So often in fact, that they were on a first name basis with the staff, who insisted we leave them in their care while we ran all over the building for tests and appointments. They brought homework, books, laptops, and took care of themselves. We made at least twenty trips to Boston over the course of two years. No complaints.
We finally settled in Springfield, intending for me to be transplanted in Boston. Finally able to participate and commit, Brennan enrolled in fencing, Rich in archery. Seven months later we were again forced to move. This time to Lebanon, PA. We had friends awaiting us there but this time there were tears. Brennan wept as he listed the eleven reasons he didn’t want to move. Rich seemed numb. They both cried when saying goodbye to their instructors.
In Lebanon, I got even more sick. By now, they were in charge of the house. Christie worked nights so they vacuumed, dusted, swept, cleaned bathrooms, did the dishes, emptied trash, did the laundry. Christie and I helped as we could, but I was in the hospital so much, it was mostly left to them. They had to be reminded often, but there were still no complaints.
I was hospitalized two weeks out of every eight for another two and a half years. They visited me almost every day between homeschool activities.
Then came the TAH. In the end, they had to be responsible for me and the machine, by themselves. They went through the training, did better on the exam than the other adults,and went on the train other people. One afternoon I had a complete emotional breakdown over the situation. In what world should my children be responsible for my very life? It was too much to ask or expect. But they took it on with the same courage and decorum they’d displayed throughout the whole ordeal. They did this while watching Perry die, day by bloody day, knowing that I would be following the same path into transplant, scared to death I would suffer the same fate as he.
They treated the five month hospital stay no differently. They had their own lives, things that I imagine most kids would rather be doing than sitting in a hospital room with their dad. We spent day after day, sitting in that small room, playing board and RPG games, watching MLP and Firefly episodes, and just hanging out. They knew I wanted to be home, and they sacrificed to ease that, day by day week by week, month by long month.
There are so many other things that have gone unmentioned. Helping me in and out of chairs. Tying my shoes. Emptying urinals. Tolerating the side-effects of medications, steroids, and before the TAH, unrelenting pain that made me hard to live with. They’ve missed having a dad who could kick a ball with them, play in the swimming pool, or even play hide and seek. Because of the moves, they’ve lost friends and opportunities most kids take for granted. They’ve had to contend with postponed holidays, birthdays without dad, and disappointments too many to number. Both have missed the last game of the season, end of the year parties, and for about five years, had no stability whatsoever. They’ve come out of it all with no resentment or bitterness, no expectations or demands that the debt they’re owed be repaid. They’ve not pulled guilt trips or acted entitled to special treatment. They seem largely unaware of how abnormal their life has been. Though on a recent trip back to our beloved library in Bentonville, Brennan and I both sat in the cafe and had a good cry. He was only five then, but all this time, I think he, like me, has been aware of the fact that we lost something important when all of this started.
Given all that they’ve carried willingly, Christie and I have tried so hard to steer them clear of extraneous drama and nonsense. I think they understood as much as we did that to have a chance of getting through this in one piece, they had to focus and not be distracted by things that weren’t important. To my mind, it has all been incredibly selfless, and I confess they did not learn to be that way from me. Where I am impatient, they are long-suffering, where I am often driven by knee-jerk reactions, they are reflective, and therefore, usually, wise.
I really can’t say it all here – it’s too much, too big to explain. I just know that they’ve somehow taken this experience, absorbed its lessons, incorporated it into who they are. I once told them I wish they didn’t have to go through all of it, but since they had to, I knew it was going to make them people who were thoughtful, purposeful, and able to survive in difficult situations. I’ve seen them do that very thing, one small action at a time as the days have gone by. I hope the rest of their lives are normal, that they don’t fall into that fifty-percentile that inherit HCM. But I know if they do, they’ll handle it with the same patience and wisdom they’ve demonstrated so far. I know it’s cliche, but I really have learned more from them than they can ever hope to learn from me. They’re my kids, so of course I love them. I think I’m more fortunate than most in that I have learned to respect them as well. Because they’ve earned just that.
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 at 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.
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)
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.
So, I won’t be eloquent, witty, or funny here (so, same as always), I just need to share important information quickly. I’d intended to post so much more about post-transplant life, but honestly, there’s been so much going on since I got home, I haven’t had time. We’ve made a lot of small trips which I hope to detail later in the “Learn” portion of the site (Gypsy Schoolhouse) and I’ve had lots of things happen that need to be chronicled here for those with heart concerns, HCM, transplant, and the like. There will be time, later. For now, there are more pressing issues, despite feeling like we’ve not had much of a breather for years.
So here’s how this week has gone:
Monday: Christie has been putting off a hysterectomy since she was in nursing school in 2009. Of course, I was told I needed a heart in 2010 and we spent the year looking for jobs near Boston, exploring travel nursing, and tying up loose ends. We left Bentonville in 2011 to start the task of looking for a home close to a good transplant center that would list HCM patients. Most of you know the story from there. In the meantime, Christie’s health has been deteriorating as a result of putting off surgery, to the point where she’s now anemic and in a bit of danger if she doesn’t have the surgery soon. Currently, it looks like late December is the target. The challenge is getting to that target without missing work – she’s pretty much spent all of her personal days and FMLA time on my 5 month stint in the hospital, the transplant surgery, and three subsequent hospitalizations, two for rejection, one for fear of meningitis. Bottom line, this needs to be dealt with before the end of the year.
Tuesday: Rich has also been struggling on and off with back and shoulder pain for the last year, but it’s become really intense in the last few months. We’ve noticed a curvature of his spine since he was an infant, but were told repeatedly by doctors that it wasn’t abnormal. We’ve recently been seeing a chiropractor who recommended x-rays and a consult with an orthopedic surgeon. Long story short, Rich has scoliosis, not surprising since Christie and I both have slight cases ourselves. However, on X-Ray, his shows a 40 degree curve on the upper spine and a 42 percent curve on the lower spine. The spine is twisted, much like one of those corkscrew loops on a roller coaster. The surgeon didn’t want to discuss surgery since it was our first visit, but we insisted that he just spill it. So, Rich needs spinal surgery in a major way. The surgeon will be placing screws along the length of his spine and attaching two different rods to them, after straightening the spinal chord. This will also require bone graft (shavings) from his own spine and some transplanted spinal bone. His “growth plates” are closed, so it’s the only surgery he should ever have to have, but it will limit his ability to bend normally at the waist (he’ll have to bend from the hips), as long as the Scoliosis doesn’t get any worse between now and surgery – the further down the rod goes into the lumbar (lower spine), the more restriction. The surgeon tells us he’ll be in bed for a few days, then up and walking, out of the hospital in a week. Six months with no sports or much physical activity, then he should be able to return to normal activity (sans roller coasters, which he is NOT happy about). Also looking at a target date of late December.
Several people have asked if we can put one or the other of these surgeries off, but the answer is, no, we can’t. It’s risky to wait on either one, being as they’ve both been put off too long to begin with. Moving on:
Wednesday: I had my monthly heart biopsy, which is never pleasant, though it’s great to see the cath lab gang. I’m pretty dippy most of the rest of the day. The way the week was going so far, I decided Christie and I needed a break. We’re trying to take a vacation next week, which is actually going to be very busy as we want to cram a lot in. I’ve not been back to Arkansas since the end of 2011 and there are lots of people on my list to see and catch up with. I booked an overnight at an inn with a day spa in Lancaster, using a 100% off Groupon and some points we’ve accumulated over the last few years.
Thursday: Boys looking forward to Nerf Club, but after an hour, we were rained out. Still sore from the biopsy, I didn’t mind leaving early, but I felt like the kids needed to run and play, given the week so far. It’s possibly our last Nerf Club for the year, so kind of a bummer for them. Christie had been up for over 24 hours (as usual) by the time we got home from the biopsy on Wednesday so she was catching up on sleep before we left. I wandered into some songwriting while she got ready to leave. The phone rang, not a good sign, early on the day after biopsy. My coordinator’s tone of voice tells me everything. I’m in rejection for the third time. Not as bad as the first two times, and no need to be admitted, but another blast of the dreaded Prednisone – 100mg for 2 days, 60 for 3, 40 for 3, 20 for 3, then – the worst part – 5 mg a day, probably forever. I’ve been on a trajectory to finish with Prednisone in the next two weeks, and have been weaning off of it 1 mg at a time for the last 8+ weeks. This also means I most likely won’t be on schedule for my one year biopsy because I’ll continue to have them once a month instead of spreading them out further sooner rather than later. I had to leave immediately to get an echo at the med center and pick up the meds. So now we’re rushing around to get to the med center and get all of this done in time to get to the inn I’d booked the day before in time to use the spa – I really wanted Christie to be able to get a massage. I finished at the hospital and we got to the inn around 4:30 pm. The room was great, but a wedding party had booked the spa and the dining room. We just relaxed in the room which we didn’t really realize was underneath the spa until 8 am the next morning when they opened with clicking high heels and the dragging of chairs across the floor. Not much sleeping in to be done. To be fair, the inn comped the the night and even upgraded us for a future visit. All well and good, be we so badly just needed a stress-free 24 hours. There were other irritations with the reservation, not worth going into here.
Which brings me to Friday: We got to see Dr. Strange with the kids. Thoroughly enjoyable. Christie ended up getting her massage at a local spa, while I got some work done at home. But I’ve been a crank on Facebook and in real life because I’ve been trying to figure out how to dump this on all our family and friends. I get so tired of delivering bad news, always health stuff. It’s old. I had to force myself to write this, because I’m so sick and tired of not being able to post good things. “Hey, I’m feeling better! Everything’s going good!” But the fact is, it’s not. We’re still trying to figure out what normal life is after these last few years. It’s been such a struggle that we’ve talked often about getting family counseling – not because we’re having problems with each other. We just feel a bit lost at this point. At the end of Return of the King, Tolkein says of Frodo and Sam, “How do you pick up the pieces of a life left behind?” We’ve said often that we feel like the four hobbits returning to the Shire after a journey so long, so hard, that no matter how much you try to explain it, you simply can’t convey the things you’ve fought, seen, endured, all the loss and hope and things left behind. It’s exhausting to try. We’re exhausted, physically, psychologically, socially. We so desperately need a break, but don’t see a way clear to have one. We sneak little moments in, but I can’t remember a time in the last 5 years that I’ve not been anxious, stressed, pressed down, figuring out how to overcome the next obstacle. They don’t seem to end, and I don’t say that for the sake of pity, but because I don’t know how else to say it. Pity just adds to the self-consciousness and awkwardness and neediness of it all. I look at our situation and realize that even after my transplant, Brennan doesn’t cognitively remember a time when we were all healthy and out of danger. And he’s yet to, even now. How is it affecting him? How has it affected Rich? I know the experience has changed Christie and I in fundamental ways – we are not the same people we were before and we’ll never be again. For myself, I can’t find the space to even figure out what my life is anymore. It seems like an endless parade of needles, wires, blood, pain, worry, loss, and financial stress. Trying to live a little bit in between all that doesn’t work – it just has to become part of normal life. You can’t make commitments, you can’t abide by a normal daily schedule. Nothing is normal. Things that need to be done never get done, there’s no time, and when there is, there’s no energy from all the running and the needles.
“All the sleeping, never waking, all the leaves in need of raking, all the business undertaking, all my bones and muscles aching…” So Dug Pinnick sings with such sorrow and anger on King’s X’ “Dogman.” I used to not understand that song. “Let me take my thoughts away, to think about another day, remembering the times I pray, to help me deal with me… to be the Dogman.” Now I do. When you are just so sick of the doubt, and the noise, and the endless uncertainly that you don’t even recognize yourself anymore because you are so beaten down, you’ve become the Dogman. And right now, I am.
“Give me a dollar or give me 50 cents, Let me take it back if that ain’t what I meant
Give me a coat or give me a bite, Give me a light bulb and make sure it’s bright
Give me the moon or give me everywhere, Give me some powder to spray up in the air, up in the air
Let me take my thoughts away, To think about another day Remembering the times I pray, To help me deal with me to be the Dogman
Give me some attention, lend me your ear, Give me what to do and get me out of here
Give me a book, give me something to read, Give me a horse race and give me who’s the lead,
Let me take my thoughts away, To think about another day Remembering the times I pray, To help me deal with me to be the Dogman
All the sleeping never waking, All the leaves in need of raking All the business undertaking, All my bones and muscles aching
Thoughts and mind are surely flaking, Over luncheons hands are shaking Surety of no mistaking, Cars and horns and glass is breaking
Give me a color, make it black or white, Give me a newspaper, tell me if it’s right
Give me a nail or give me a bat, Give me a skinny or give me a fat
Remembering the times I pray, To let me take my thoughts away To think about another day, To help me deal with me To help me deal with me to be the Dogman”
I spent the first week at home wandering around, pining to pick up where I left off – painting the trim in the sun room, working on a songs for one of the many projects I’d mapped out, cooking through my endless list of recipes and ideas I wanted to experiment with, starting the sequel to The Ghost of Maddingbrew. The spirit was willing but the flesh was weak. I was very wobbly on my legs and couldn’t get around much without help, or at least someone standing beside me in case I started to tilt. I was dizzy most of the time, and so easily fatigued that I couldn’t make plans very far ahead of time. We were able to meet some friends to eat, spend an evening with other friends. We were all finally able to go to the Game Table Cafe together – it had become a much anticipated destination, about an hour from our house. Just a coffeehouse, really, but stocked with hundreds of geeky board games like Settlers of Catan, Dice City, Carkasonne, and so many others we were anxious to check out. I had to wear gloves (because who knows where the last person’s hands had been while touching the cards and pieces, right?) and a mask, since we were seated in close proximity to other customers. I was able to buy a drumset via Craigslist for what should have been labeled un-armed robbery. I played a little here and there, but lacking stamina, couldn’t last long. The sensation of sticks in my hands, the reverberation of the drumheads in my wrists and forearms, the struggle to tame the bass drum pedal…all so familiar, yet such a distant memory. I played along to both Jellyfish albums and a few King’s X discs, and of course, some Beatles tunes – I’d never played any of these on the drums because the albums were either released after my diagnosis in the late 90’s, or because I’d not discovered them before then (The Beatles in particular). It felt like having a missing limb re-attached. I spent lots of time just sitting on the couch or the porch, reading and snoozing, and Brennan wasn’t usually very far away. He stayed right by me wherever I was for the first week or so.
The flip side of all this (which was glorious) was that I was grumpy and snappy a lot. Everyone warned me about the effects of the Prograff and steroids (Prednisone). I was on very high doses of both, and along with the fatigue and some of the awkwardness of re-acclimating to life at home, I probably wasn’t much fun to be around. The medications have a tendency to make me feel over-stimulated. I’ve learned the warning signs, but at first, it seemed like I’d be fine one minute and extremely over-stimulated the next. Every little sound and movement became a distraction that warranted my full-attention – I couldn’t keep up with conversations, and became quickly frustrated when expected to. I couldn’t remember much of anything. Weekly biopsies caused a lot of anxiety because I was so beat up – the thought of getting stuck with needles 4-5 times just to get an IV line going was exhausting. The skin on my neck around the cath site was so battered and torn up from tape and constant punctures that the biopsies were far more painful during and after than all the swans caths over the last few years. And waiting for the results was (and still is) a nail-biter for the 24 hours it takes to get results.
And of course, I got bad news early on. I’d been home about three weeks, had a few good biopsies, then one came back showing rejection. It was mild, but nonetheless, I had to be re-admitted for a few days for IV meds. 1000mg of IV prednisone for three days in a row. Wasn’t I already having enough trouble with this stuff? My favorite nurse, Natalie, was there to admit me and it’s always a great comfort to see her when I’m there. Inevitably, it was nearly impossible to place an IV to administer the Prednisone or find a place to draw blood. This results in attempts up and down my arms, all around my wrists and on the back of my hands. At one point, nurses were looking for places in my legs and feet to get blood. I went home, hoping the meds worked, and with a few tweaks to my home medication regimen.
Unfortunately, two weeks later, my biopsy again showed rejection. Back to the hospital for five days to have stronger anti-rejection meds administered. By this time, I’d caught a cold and was already miserable, but required repeated blasts of ATGAM to stop the rejection. More poking around with needles, until the nurses gave up. Corrina, the PICC nurse that took care of my line while I lived there earlier this year, was called in to place a line, but after more poking around with larger needles, couldn’t find anything either. Eventually one of the intensivists that oversaw my care while on the TAH ended up putting a mid-line in my neck. Once it was in, I got hit with a mix of Prednisone, Tylenol Codeine, and Benydryl as a “pre-treatment” to the ATGAM. Needless to say, I was pretty zoned out, which must have been amusing to my visitors and the nurses. I scored 17 needle sticks in 24 hours that visit, my personal best. A closer look at my biopsy during my stay revealed that the rejection was actually lessened from the previous biopsy, meaning it was probably just taking longer to reverse than expected – but I was moving in the right direction.
I’ve been back a third time because my sinusitis had continued to worsen, and I was having migraines. The infection had been going for four weeks at that point, but we were all concerned that the migraine was due to a medication overload, or something more nefarious. Labs showed nothing, but to rule out meningitis (a major life/death concern for transplant patients) I had to undergo a lumbar puncture so they could analyze the fluid in my spinal chord. This is essentially what’s known as a “spinal tap.” You have to be awake, you have to be still (so they don’t paralyze you), and it hurts like some level of hell that Dante wasn’t sick enough to include in descriptions. I wish there were a more elegant way to describe someone sticking a very big, long needle into your spine via your lower back, but there isn’t. My pain sensors are heightened due to the Prograff I take daily, so that just added to the fun. I’m told that I shouldn’t still be sore from this, but the muscles in my lower back ache like crazy from the afternoon until I go to bed, and they’re stiff when I wake up. Some of this is because I’m slowly weaning off of the Prednisone, but I suspect it’s just taking a long time to heal, like everything else, due to my suppressed immune system.
In between all of this misery, I’ve been able to taste normal life a bit. We’ve been on some outings as a family. I’m finally driving and able to take the boys to their clubs and activities, play with the dogs a bit, start recording some demos of songs that I’ve been holding in my head since I was admitted last January. Lots of board games, My Little Pony and Big Bang Theory marathons, a little D&D, and lots of small paint jobs and catching up on home repairs. Rich and I plan on going to the League of Legends semi-finals at Madison Square Garden later this month.
All this to say – the whole thing is an uphill roller coaster. There are mornings when I feel like I can take on the world, but feel like I need to go to the ER by noon. I feel in control of my emotions and suddenly flare up or break down over the smallest thing. I’m not using Facebook much, nor do I like communicating on the phone – both make me irritable and impatient, and I can’t explain why, really. Crowds don’t seem to bother me, but I get confused and panicky if there’s a lot of noise or people taking at the same time. This will all even out over time, but right now, I feel like I’m walking on a very thin tight-rope, physically, psychologically, and emotionally. I’ve taken a lot of medications in the last 17 years, but the side-effects were always physical; nausea, headaches, fatigue, general pain. I learned how to handle that stuff and carry on without people being able to tell. These meds are a whole different thing. There’s the physical side-effects to deal with, but they’re more intense than before. The emotional side-effects are almost impossible to predict, even harder to control. I’m trying to be more alert and remove myself from a situation when it’s stressing me out or causing panic. But the over stimulation happens so quickly, I find myself lashing out or grumbling before I even realize I’m doing it. And even then, it’s difficult to just stop or move on. I’ve always felt like I was beating the meds, and I wouldn’t let them get the best of me. Against the steroids and anti-rejection meds, there’s really no winning. Those who have gone before advise me to do the best I can each day, and then let it go – try it again tomorrow. I’m glad my family is patient with me because I couldn’t deal with someone like me right now – I’d be snarky and defensive all the time. But they’re right there with me, as they have been through the whole ordeal. It’s getting better – slower than I’d like. The aches and pains as I decrease the steroids are more distracting than I’d like. I’m less in control of my emotions than I’d like. But this is just as much part of the journey as the waiting was. There’s no going back, so I’ve got to eat what’s on my plate at this stage, and try to enjoy life in between as much as I can, and try to trust it will get better, even though there are days when it feels like I’m worse off than I was before. Having a strong support system of family and friends is invaluable in this sense – I don’t see how anyone could do this alone.
“Please don’t wake me, no don’t shake me, leave me as I am…I’m only sleeping…”(I’m Only Sleeping, The Beatles)
I thought it would be a good idea to back up and talk about the things that have happened since the surgery. It’s a lot, so I’ll break it up.
I don’t remember much of the first week after the transplant. There are pictures circulating of me floating around, sitting up in bed, smiling, apparently lucid. All I really remember is pain, which I’ve detailed in a previous post. But I mention it again, because I think I had some very emotional, and I hope sincere, conversations with some folks, and I remember a lot of elation, which may have been the drugs. I remember mostly being overcome with both joy, and excruciating physical pain, simultaneously. My nurses were so kind and patient, and Christie was the Energizer Bunny. I couldn’t leave the bed much, but after sitting daily in uncomfortable hospital chairs for five months, my back was killing me. My restless leg syndrome (a constant irritation) was exacerbated by the some of the meds they were pumping into me, so it was nearly impossible to get solid sleep. Christie gave me endless massages, even standing at the end of the bed, helping me to move my feet around to stave off the restless leg as much as possible. I would actually fall asleep sometimes – the only sleep I would get during that first week. Then she’d guard the door to ward off the endless flow of doctors, consultants, and other teams who felt they needed to ask the same questions, sometimes 7-8 minutes apart from one another during the day.
Getting up and out of bed after the first few days was really hard. There were the incisions, obviously, but I had horrible swelling in my feet, making it extremely painful to put any amount of weight on them. I’ve developed a violent allergy to adhesive, and had tape burns on my wrist that looked like severe burns – they’ve yet to heal completely four months later. I had an “illyis” (no idea how it’s spelled but I think it’s Latin for “let’s watch this guy starve to death”) which meant my digestive system pretty much shut down completely – meaning I couldn’t have the strong pain meds most people get because they make the problem worse. In the meantime, no food or water – meaning no fuel for strength. So it was incredibly hard to get up and move around with all this going on. Not to sound dramatic, but I think this part was the most difficult struggle I’ve ever faced. But there was no choice – I wanted to go home and I couldn’t just stay in the bed. My feet were no better by the time I was discharged, but being immune-suppressed, I didn’t want to stay any longer than necessary. I went home two weeks after the transplant, using a cane and a walker, wearing over-sized slippers, and more stiff and achy than I knew I could be. But after living at Hershey Med for almost six months, through Perry’s death, Brennan’s birthday, my twenty-fourth wedding anniversary, and a heart transplant, I was going home.
The big thing for me, post-transplant, was (and to some extent, still is) dealing with the extreme emotions brought on by the large doses of steroids and anti-rejection medications. A single hour might be spent recalling every mistake and failure in your life, then writing a sloppy drunk e-mail to someone expressing your love for them while weeping the entire time, then getting red-hot angry about your phone bill or the guy yelling about his pants two rooms down, and the only thing restraining you from throwing a urinal through your door at someone is the fact that you’ve still got a server room full of wires and cables tying you to the bed. And you know you’re a basket case – you’re just too stoned and tired to stop yourself.
On the way home we stopped for Slushies (in honor of Perry) and shoes that fit (because my feet were HUGE). I limped up the front steps with Christie and Rich’s help, then carefully let the dogs smell the six- months worth of hospital on my clothes. Then the back spasms started. The whole time I lived in the hospital, I wondered what the uncomfortable bed and chair were doing to my back. Apparently, as long as I continued to sleep and sit in them, my back just conformed. But the moment I actually sat down on our couch, my lower back started clenching uncontrollably – knocking my breath out and making it so I couldn’t talk much between gasping. The pain spread all through my chest and Christie had to use ice-packs and a lot of patience to get me to breathe through it. This went on for probably half-an hour. I think I fell asleep for a bit – I remember being so exhausted and feeling bruised all over.
I’d been looking forward to my first shower for months. Rich and Christie helped me climb the stairs. I mentioned using a cane earlier; Perry’s mom, Victoria gave me the cane that Perry had used when recovering from his TAH surgery. It was hand carved by a beloved uncle, and I remember it always propped somewhere around his hospital room. She acted like it was a small thing to her, but for me it was huge – having a part of him there with me while I was trying to walk again and recover meant the world. The cane is still sitting by my desk and I find myself taking it with me sometimes, even though I don’t really need it anymore. More often, I talk to it like Perry can somehow hear me through it. I tell him how hard this part is and he tells me to quit crying and just do it. Because that’s what he would say. Those first few weeks, I couldn’t have gotten up and down the stairs without the cane, just like I couldn’t have made it to the TAH surgery without him joining my family in supporting me.
The shower was glorious, but had challenges of its own. I still had open tube sites and deep wounds from the tape burns on my wrist. The water stung my skin and it took me a bit of time to tolerate standing directly under the water. I don’t think I’ve honestly been able to really enjoy a shower until the last couple of weeks, free of worry about tape burns and biopsy sites in my neck that needed protection. I’ll never take being clean for granted again. In the hospital, there were nights when it was hard to sleep because I could smell my own body odor or hair. It was difficult to stay clean with the TAH because it couldn’t get wet – I had to use the sink the entire time I was there, with the help of Christie or the nurses. It worked, but I never really felt clean.
There was a lot of anxiety and fear on my part at the outset about medications and refills. There are so many pills to take (about 29 per day) and some have to be taken at the exact same time every day. Some change from one week to the next, depending on my lab results. The refill times were spread out all over the place, and I knew I wouldn’t remember to get refills in time. Christie, as usual, got it all sorted out, but it was incredibly overwhelming at first, which in turn made me feel like a whining child, but I was really worried and feeling stupid because I knew I’d forget something important. And I have – twice. But nothing life-threatening happened, and we were able to fix it with the help of my coordinator.
A lot of things are overwhelming, still. Life in general. Re-acclimating to the world. Trying to pick up where I left off with family and friends. Trying to prioritize the many projects that have piled up over the last four to five years. How to start new projects that have been brewing in my brain for longer than that. Coming to grips with my limitations and how long it will take to recover physically and emotionally. I’ve lost my voice and most of my ability to play the guitar. The drums are like riding a bike, but I’m nowhere near where I was when I gave them up seventeen years ago. Everything is a process, and I’m burned out on processes – they’ve been testing my patience during this whole five-year wait. But I have to figure out how not get overwhelmed by the overwhelming. And I will.
I dated my wife’s best friend in high school. Well, the more accurate word is “pursued” or maybe the phrase “pined after.” It was an on again-off again relationship, complicated by a guy who was a bit older and cooler than me, myself on the losing end most of the time (at least in my post-pubescent, angst-ridden view of the situation). This friend was generally soft-spoken, and like the rest of my friends, firmly focused on all the latest music, trends, and interests of a late 80’s teen, which included me less than I liked most of the time. We were in band together, held hands at the football games, and looked for one another in the halls until interest turned into true, eternal love to last the ages. Oh, the agony, the notes exchanges between lockers (pre-Facebook, we gauged relationship status’ by locker notes, of course), the cheesy Richard Marx songs. It was unrequited love at its apex – if you need more to go on, reference the nearest Debbie Gibson or Tiffany song. I was in the grips of an evangelical fervor that would last into my mid 30’s, but this unfulfilled romantic quest permeated and enter-twined with every aspect of my life between 1987 and 1989, timidly and cautiously advancing from a crush, to more serious plans for the future. She was everything I ever wanted, or some such Michael Bolton lyric. Red-headed, oft-times in awe of me (in my humble estimation), and we were headed for a lifetime of love and adoration. If I could just get rid of that other guy.
Then there was Christie.
She entered my world on the heels of our youth director’s daughter one Wednesday night. They entered late, of course, likely because said director’s daughter had been finishing off a cigarette (or worse!) in the parking lot, or simply didn’t give a rip if they were late to Bible study. She wore a jean jacket, no jewelry, and the way she carried herself…if she’d been wearing a sandwich board painted in red with the words, “I couldn’t care less what you think,” on it, the message couldn’t have been more clear. I mean, everyone tried to act cool and aloof and one-of-a-kind (all of us in our blue jeans, Bon Jovi shirts, and black, high-top Reeboks), but this was a no-nonsense, don’t mess with me, rock hard shell that, while not unkind, really, really, really couldn’t have cared less. She was obviously bad news – anyone who hung out with the youth pastor’s daughter was, or was about to be. I didn’t pay her much more mind.
But her family joined the church, and she became a more permanent fixture in my life when she moved up to 10th grade (along with her best friend, who was soon to become the sole object of my affectations). Our orbits began to cross, and I still couldn’t figure her out but for this one thing: she really, really, really, REALLY didn’t care what anyone thought. It wasn’t an act. She wasn’t trying to be cool. She just didn’t give a single whit what anyone thought about her – peer, teacher, authority figure. If for some reason she did, it figured absolutely 0% into her decisions and opinions.
I had no idea what to do with this.
In my little high-school/youth group world, my peer group had a depressingly boring autonomous world-view. We had very similar interests, and mainly wanted to do what teen-agers do – hang out with each other, go to the movies, skip class, and survive high-school. As time passed and our obits began to grow closer, I learned details that explained much. She’d moved to my small Arkansas town from an even smaller Arkansas town about 45 minutes away, abruptly, in the middle of 9th grade (10th for me). With her father disabled from a severe back-injury, her brother getting mixed up in drugs, and her mom working nearly 1.5 hours away in Little Rock, they’d made the sudden decision to move. This would be traumatic for any teenager who’s never done so before, but to Christie, it was near devastating. She’d always lived in the same town, had the same friends, and spent her time doing the same things – which made her happy. But they weren’t the things that excited or inspired the people in my little world.
It was always weird how, on the weekends, when trying to coerce her into joining us for yet another concert, youth group event, or boring party, her only response was, “I can’t, I’m going to Searcy.” What she did there, in that podunk little town was beyond any of us. But she didn’t care. It frustrated us, and soon, our well-meaning invites ceased. Some people (not myself, of course…) took it personally. Didn’t she want to start a new life here, now, in the present? Why keep going back to a place in your past? As an Air Force brat, I couldn’t get my head around it. Want to come see our band tomorrow night? “Going to Searcy.” Going on the youth retreat? “Nope. Searcy.”
A few years passed. I went to college in Memphis. The Shakespearean romance between myself and her friend began to dissipate and when I returned from school that first semester on weekends, I found myself more and more haunting the high-school parking lot on Friday afternoons, looking for Christie. Looking for her at church. Caring more about whatever it was she was doing than the endless parade of monotony adopted by my younger friends in my absence.
She called me at school one Thursday night. “I’m going to Searcy Saturday. Wanna come?” I did. And boy did I uncover a mystery long left unsolved. What was in Searcy? Better friends? More exciting times? A secret boyfriend? Hopefully something even more riveting than my speed metal concerts and non-stop bouncing from one planned event to the next. But it was nothing nearly as exciting as all that.
It was just a bunch of Old People.
I don’t remember the order, but we visited a lot of (what seemed to me at the time) Old People that day. They were her Grandmother, who I’d already gotten to know a little through her own visits to my town. Aunts. Uncles. Cousins. Friends of her parents who she had grown up with and grown to love like family. A friend or two maybe, but they don’t stand out in my mind. We spent the day sitting around musty living rooms listening to her Uncle Sherman’s stories about his dogs and the time his brother Ben accidentally shot him in the butt on a hunting trip. We helped her Grandmother can fresh okra from Ben’s garden. At Ben and Francis’ house, Christie resumed work on a hand-crocheted blanket. I doubt it was ever finished – Christie wasn’t there to make a blanket. She was there to see her aunt, and to share this Thing they’d had together since she was little. We picked snap peas and tomatoes with Ben in his garden. Later that night, we ate dinner with her Uncle Harry and Aunt Dean, two of the kindest souls to ever grace this planet. One of the most vivid memories of my life is sitting in their dimly lit living room as the day darkened, talking quietly, them drinking coffee, and me enjoying some cocoa, Aunt Dean being sweet enough to accommodate my distaste for what seemed to be the Authorized Family Beverage.
I don’t remember talking much as we drove back that night. You have to understand that at the time, I was a 6+ft. tall, lanky, hard-rock guy. Long hair (probably with braids), torn up blue-jeans and black heavy metal t-shirts. Searcy is a Country town, and Christie’s family could have been the face of their city council. Who was this guy she was now dragging around? They probably thought I was on drugs. He’s a drummer? Isn’t that Satanic?
I got none of this. I got my hands a little dirty in the soil of Ben’s garden. I got fresh cucumbers and peppers for lunch and, I’m sure, some delicious home-made lunch from Granny. I met Sherman’s dog’s. I got to watch my friend in awe of her Aunt, hands weaving and twisting as she created art from raw yarn. I got to sit in a darkening room and talk about things that weren’t consequential, yet monumental because at for that hour or so, we were just together, in the moment, unhurried and unpressed. Her family gave me time that day, generously, despite the misgivings I’m sure they harbored about my appearance and immaturity. These trips to Searcy became more frequent on my weekends home. When Christie and I did finally start dating later that year, I wonder what they all thought. I wonder if they imagined that we’d still be together after all that has happened.
The enduring thing I’ve learned during my marriage to Christie is that she doesn’t like change. She didn’t then, and she doesn’t now. Yet, during the last six years, change has been her daily bread. The day after we returned from Boston in 2010 with my transplant diagnosis, she was up early, on the phone, adjusting her work schedule, following up with the Tufts team. Where should we go? What should we do? She’d already been online trying to find the nearest transplant center that would list HCM patients. Months later, when those efforts had proven fruitless, she took a deep breath and said goodbye to this family with whom she has such deep relationships that she chose them over anything else when she was a teenager, knowing full well that for us to accomplish the task ahead, she might never see them again. With me so sick I could barely help, she took a job with a travel company for nursing, packed up a household, got most of it into a storage unit, the rest into the back of a 2009 Honda Odyssey, and drove us to Hershey, PA for her first of five, three-month job assignments, in an effort to get me listed for transplant in Boston, PA. Every three months – change. Change of job, boss, peers, environment, residence, driving routes, and finances. When we finally did land close to Boston, in Springfield, MA, we were told we would need to relocate yet again. So she re-packed a household, a new dog in tow, left two good-paying jobs, navigated a down-to-the-wire closing on a house, got us moved in, and began yet another new job.
In between all of this were the negotiation of contracts, dealing with my deteriorating physiology, coordinating doctor appointments, procedures, hospital stays, child-care, travel, money, loading and unloading a temporary household with the help of two children, solving inadequate housing issues at times…there are so many snapshots I wish I could just post, so everyone could see. And she went about these things in the spirit I know so well. No one gets in her way, and yes even if she cares what you think, it’s irrelevant in light of the goal she’s going to reach. She’s going to get there – with or without you, and she’s either going to wrestle the Thing to the ground and stab it in the throat, or she’s going to go down screaming and cursing and someone’s still going to get hurt.
The most important song on my latest (and long-time-coming) album Instead of Wither is titled Brave. I wrote it in Springfield, MA at a low moment, when we realized my blood type and disease were still playing havoc with my chances on the waiting list, and it seemed like even the transplant doctors had given up.
We’re so small, though I know, we’re not the only ones Lucky shot the whole thing hasn’t come undone
All reasons left to hide, have long past gone We’re falling into fears, and traps not yet sprung
If I could be cool, if you could be strong If we could find a way to just hang on If we were not fools, if we could be saved Somehow we might learn to be…Brave
We’re so small, just a spot in history Sorry lot, we may break, we may be set free Every straw is short, every wait is so long Stand still, hurry up, your moment may not come
Not because I’m scared, but because I’m tired Not because you fear to face the fire Not for all our doubts, not for all our aches and pains But for hope and one last chance, it’s not all a waste
I owe her my life. I owe her everything. I have written much about all the people who have helped along the way. About my fellow Taffers at TTLG, and Perry, and even zombies at one point. I’ve thanked so many people. I’ve refrained from doing that much when it comes to Christie, because while she’s determined that the Thing isn’t over until it’s over, it wasn’t really over yet. She smiles more now, a warrior at the end of her quest, the dragon dead, the village safe again. But I know that all this determination and bull-headedness was born and nurtured in small houses while canning pickles, and in old men’s gardens between the rows of ripe tomatoes. With Ben and Sherman’s dogs, and at Granny Lucy’s elbow learning to make pie crusts and sausage gravy and recipes measured in increments of “just enough” and “you’ll know when.” I could tell you long stories about these aunts and uncles, this grandmother, and their hardships as children, the brutal and unfair events of their young lives that made them into the people they were, people worth forsaking all that fleeting teenage silliness to be with for as long as she could, even though life’s circumstances tried to push her on from them. At that time, back then, it was the best of all possible worlds to live in.
See, that’s what happened to us. Life was good for just a little while, between 2006 and 2009. Then I started getting really sick, and we both just wanted the best of all possible worlds to live in – we lost that for about six years. Forced from it by circumstances beyond our control. But the whole time, she’s kind of been trying to get back to Searcy, to get us back to that best of all possible worlds as a family. And she did it. As much as everyone wants to claim this whole Thing a victory for me, she’s the real hero and champion of the story. There’s really no other way to look at it. Because get this: she didn’t have to do any of it.
And that’s the real mark of a hero, isn’t it? They don’t have to do it. Yet, they determine that it must be done. Either for justice, for truth, or in this case, for love. But many couples don’t come out the other end like this. They come out divorced, bitter, angry, put-upon, and irrevocably damaged. Alcoholics. Absentee parents. Cowering and shaking in the shadow of the dragon. But she stood fast – she fought and insisted and did what had to be done no matter who agreed or didn’t, whether or not anyone understood. I know I’m married to her, and we still love each other very much all these years later, but she’s my best friend. She’s my hero. And according to her, that’s all she really cares about – and I still consider myself privileged to be that person, because honestly, just like that day I first met her, she still doesn’t really care what anyone else thinks. I have no idea what I did to fall into the good graces of such a fierce and loyal soul, but I did, so n’ya n’ya to the rest of you. The only reason I’m breathing, literally, is because of it. I’ve learned to trust that when she decides to Go Back To Searcy, you’d better not get in her way, and whatever that Means at the time, you can also bank on the fact that it’s worth it in the End, whatever the cost.
I can only say thank you, and try to be a man who is worthy of such devotion and sacrifice. Heh, I blew that one years ago. I try to point out to my two boys these qualities as often as I can, but how do you quantify what has happened, or articulate the depth of such a commitment? I can barely grasp it myself. I’ve said before, just because I’ve finished doesn’t mean I finished well. I hope I was cool, I hope I was strong. I wish that objectively, I could look back on this whole experience and say that I was Brave. But I don’t know if I was or not, because none of us can be truly objective about ourselves. But this I know – she was Bravery personified. She was relentless. She always has been.
As for the girl I dated in high school, I’m happy to report that the other guy won. He’s a great guy, and they have a beautiful family together. They go to church with my parents (hello, Shelto’s, if you’re reading!), and I have fond memories of her. They’re good people but I’m glad I lost that battle.
I wouldn’t have wished the hell we’ve been through on anyone. But I’m glad when the time came, it was Christie who was beside me, in front of me. It makes sense. It always has. You need the person who’s determined to Get Back To Searcy. We’re not there yet, but I’m starting to see the exit signs. They’re as beautiful as she is.
p.s. Also, don’t tell her I posted this. She’ll be embarrassed. Thanks.
In 1981, some brilliant and visionary person worked at Scotsman Ice Systems, and developed “The Nug.” It’s the chewable ice that you generally find at Sonic, but can’t afford for your home because the machines run in the neighborhood of $2500 to $4000. But that’s the kind of ice machines they have at Penn State Hershey Medical Center.
I pondered this at acid-trip length Tuesday night as I lifted a plastic spoon with four of these little ice nuggets to my nose to study them more closely. I could only have about 12 of them since I had a procedure the next day, my first biopsy following the transplant surgery. I’d not eaten or drank anything really, since 4am last Tuesday. One week. There was a moment, while waiting on the nurse to bring the cup of icy goodness, when I thought I’d actually died and gone to hell. It was the only time in this whole ordeal that I actually wished I was dead – that I’d died during the transplant surgery. Perry warned me that the recovery from the transplant would be way rougher than the TAH recovery. He did not lie (ever. Ever.)
I know this because in the middle of my drug addled hallucinations, fasting, and hellish pain last week, I had the presence of mind to look this up and read about it. If there truly is a heaven, there is a special place reserved for this man who worked for Scottsman in the early 80’s.
At that time, I had:
Skin damage on both wrists from my severe tape allergy. My right forearm feels like it’s broken from palm to shoulder and no atopical or IV drug has yet to touch the pain.
A swans catch burning in my neck.
A huge scar sight from the removal of the TAH canulas, continuing to the second open heart scar.
7 (SEVEN) chest tubes. The dressing for this whole thing had to be changed continually because interstitial fluid, and blood soaked the entire bandage any time I shifted or turned in the bed. Bandage off, cleaning with Chlorahexadine (acid made from the blood of Satan himself), skin barrier, piling on of gauze “boats”, pads, tape. My stomach and chest look like a shark got hold of me but good.
Pulse Ox on my finger, BP cuff making my arm sweat, and ten bloody fingers from blood sugar pricks every, single, hour for a week.
Restless leg syndrome exacerbated by the steroids, so absolutely no sleep.
Hallucinations and delirium from the steroids.
Pain in my legs because of the nerve endings waking up in my feet and calves (I honestly don’t think I’ve really felt my toes my whole life. I feel like I’ve grown two new appendages. It’s painful)
THE NG TUBE. Looking for a God to believe in? You will bow to the awesome pain and misery of the NG tube. You will offer your children to It in sacrifice. You will promise It anything. You will do whatever it tells you. It becomes your whole world. They stick this Thing up your nose and you have to swallow It down your throat to your stomach. This allows the nurses to block or dispose of anything that hits your stomach. It’s a way to keep you from throwing up water or anything else that goes down (nothing, really) until you have a bowel movement. Because if you vomit, you’re headed back to the OR for repairs, guaranteed.
I’d not eaten in 6 days. Thirst and hunger were my whole world – every time I swallowed, my head exploded like a ripe watermelon. My eyes felt like they were popping out of my head. The NG tube presses on the roof of your mouth, but It feels like someone has shoved bamboo rods into every single orifice on your head. It becomes your master, and you will obey it.
No sleep, no food, very little in the way of pain meds because everything has to be controlled so strictly.
Massive amounts of bloating and gas, stomach rumbling, and that feeling like you’ve just pooped your pants, but it’s constant.
So at that moment, I really did wish I’d died on the operating table. I won’t pretend it wasn’t the worst moment of my life, the most pain I’ve ever been in. It was a hellish parade of needles, burning tape, chest, stomach, face, and throat pain, the feeling that my arm had been broken, hunger, thirst, painful gas, burning cleaning solutions, hallucinations, finger pricks, blood, fluids, sputum, and the NG tube, my god the NG tube.
The next morning my tubes were pulled. Then the NG went back into the depths of Satan’s anus from which it arose. Then yesterday the swans, the cords, the other stuff, gone. Other than feeling manky, I feel human. I can breathe. I can think about future plans without a gray cloud of threatening death looming in the distance. I already have two collaborative music projects in the works – one, an instrumental, meditative work with an instrument called a “Hung” and some hypnotic percussion. The other, a King’s X mosh-fest with a friend from Massachusetts – it will be a concept/tribute album to Perry who died here in the HVIC in February. And of course, I want to write, write, write, and spend every moment I can with Christie, Rich, and Brennan just doing nothing.
I don’t want to end News of My Demise. I want a whole and complete account about this whole mess and I don’t think I’ve quite captured it yet. At the same time, I’m so ready to move on and retire the whole ordeal so I can get on with a new life. I guess it will be finished when it’s finished and I will know. My Aunt Sandy wants a News of My Recovery. I do too. But I want it to be music, novels, food and good wine, laughter with friends, and just goofing around and most of all, an end to the grimness that has lurked at the edges of everything we’ve done for the last 17 years. I just want to live.
Neal Morse sings a line that touches me deeply – I sob every time I hear it: “You’ve been schooled, had aggression in large amounts – just be truthful, man it’s everything that counts. There is no hand waiting that must be paid, we will leave our encores all un-played…but at the end of the day, you’ll be fine….” (Spock’s Beard – At The End of the Day)
The sentiment being: no matter how we all want things to end, we’re going to be interrupted by our own deterioration at some point. But that’s okay. Just be truthful because it is everything that counts. I know this: I haven’t been truthful with some people. For most, that’s no big deal. There are others for whom it’s very fortunate. Those conversations and that truthfulness will come – but later, when I’m not amped up on steroids and ready to wrestle bears. For the most part those will be good and conciliatory conversations. For others, that truthfulness will be very unpleasant. But I’ve been putting off saying a lot of things – good and bad – to a lot of people for a long time. I wanted to get to the other side of this. I think to live truthfully is to live deliberately, which I’ve not been able to do for a long time. I crave more authenticity and transparency for myself in my relationships. I’ve been afforded a chance to do that now. And I fully intend to.
And now, the prospect of going home, to a normal life, whatever that is. Hopefully one where people aren’t dying all around me, and suffering is just a given. Fewer needles and no cutting. For a guy who used to pass out at the sight of a needle and lie about getting his flu shot, I think I’ve come a long way.
And what can I say about my unknown donor that hasn’t been said better everywhere else? It is the ultimate gift, the ultimate sacrifice, the ultimate joy and sorrow. It’s a conundrum that I can’t wrap my brain around yet. I doubt I ever will.
So I guess this blog post was inevitable, really. Or maybe I really would have died waiting like so many others, especially those with HCM. Either way, there are a few more loose ends to tie up. I’ll have more perspective in the coming months. Right now, I’m just wondering what the hell all of this was. What did we just do? What just happened to us? Did we make the right decisions? I’m convinced that regardless of how this was going to turn out, like Miley Cyrus sang – it’s not reaching the pinnacle of the mountain that matters – it’s the Climb. Did we climb well? Not me. Not a lot of the time. Just because I finished the race doesn’t mean I ran it well, with the integrity that I desperately hope lurks somewhere inside of me. But now I don’t have a choice, because I’m not just climbing for me, I’m climbing for the guy who made it possible to keep climbing.
I’m also climbing for Perry, to me, a supremely important reason to climb well, truthfully, with integrity, honesty, humor, and patience. Holy crap, if there were some way to articulate how prolifically, wholly, and with what degree of cowardice I would have given up if it hadn’t been for that kid. He saved me from myself, and from failure in ways I just don’t know how to explain. The pain of that loss is still too near and too sharp for me to talk about much at all but understand my full meaning when I say he kept me from going over the edge. I was 44 and he was 18, but Perry forced me to be a grown up, to grow up. He refused to validate my self-pity, my fatigue – but he also refused to pretend he wasn’t terrified and angry. He let me be terrified and angry, insisted on it. I don’t know where he came from, what well of strength he drew upon. And I really don’t understand how he had any left over for my nonsense. But he did. And as much as I’m mainly able to be here writing this because of the mind-blowing sacrifices of Christie and my boys, that last 5%, where the finish line seems so far away and so intangible – he carried me those last few miles, fairly tossed me over the finish line. He did that for Jamie too (who got transplanted successfully the week before me and is doing well). It’s not fair that he isn’t here for this. It makes me angry and bitter, but he wouldn’t abide that either. All I know is if it hadn’t been for him in the right place at the right time, I wouldn’t be here right now. God, I miss him so desperately.
There’s more to tell. Not much, but a little. So I’ll be faithful to do that. But it’ll be after I: a) take a shower, b) eat crab legs, and c) buy a drum set. That may not sound like much but to me it sounds like life. And I’m ready to live.