A Day In The Life

“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.