The Dread of Night
I need a moment to be real and perhaps a bit unpleasant.
I used to love to go to bed at night. The Boy and I would slip between the sheets and I would curl up on my left side and he would spoon me... and all would be right with the world. One of us would wonder aloud at least once a week “Why didn’t we get into bed earlier?” because sometimes it was literally the best and most comfortable, comforting part of the day.
Our two dogs and and at least one of our two cats shared our bed with us and we were one big, happy (If a bit cramped) family.
Not anymore.
Because of my necessarily nuked immune system, I now sleep in what we have affectionately dubbed the “RR” or “Recovery Room.”
I went to great lengths to make this room cozy. It has bright Tiffany-blue walls, a pretty and bright Pottery Barn duvet over a fluffy down comforter. The sheets are 700-thread count on the strangely comfortable hospital bed that my sweet friend Dayna donated to me. There are blackout drapes (thank you, Vicki!) that perfectly match low-slung slipper chairs (should anyone visit and I be laid up like a 19th century heroine), a wall-mounted flat-screen TV, and even a desk and printer, should I want to get any work done. The walls are decorated with framed posters from the musicals I’ve been in, there’s a wonderful photo of Barry Manilow watching over me (thank you, Coral!), and all sorts of little treasures I’ve collected from friends and family. And it’s all attached to a private bath.
It’s lovely and comfortable and each successive night that I’ve been home from the hospital, I hate going to bed there more and more.
Of course it’s not the room’s fault. It’s lovely and I realize I’m a spoiled brat for complaining about it. It’s my body’s fault and it’s the transplant medications’ fault... ah, but those things are trickier to complain about.
Because I got exactly what I wanted and waited and wished for: I got a new heart and as previously mentioned, it’s a Ferrari. A wonderfully generous human being donated it to me as their final selfless act on this planet. A team of medical professionals spent oodles of their time and money going to school to learn how to place that heart in my body and to keep me alive and going through multiple other surgeries after that. My parents and my sister flew across the country to be by my side for weeks while I fought for my life in that hospital. A veritable horde of friends and family members called, texted, emailed, prayed, sent cards & gifts, visited me in the hospital, followed me closely on social media, and cared so much that at times it was and is gloriously overwhelming.
And The Boy. My God, the side I have seen of him not just in the past 5 weeks since we received The Call that saved my life— but in the past YEAR after my collapse in August 2017 (the one year anniversary of THAT is actually today, but more on that in another post) and the long journey to being listed and then the wait itself... he has been a complete miracle. I am in utter awe of him and have legitimately fallen in love with him all over again.
All of these things, you guys, they really do make me realize how lucky I am and they really do make it hard to complain... but real is real. And the reality is that a lot of the time, despite the glory of all listed above, I feel pretty awful.
The reason I no longer enjoy sleeping is not just that I’m doing it alone these days in the RR. It’s that I can only comfortably sleep on my back because of lung surgery incisions and healing tube/drain incisions and sternal restrictions. And not only do I sleep on my back, my back HURTS. I can’t move some of the muscles back there because of those same sternal restrictions— and they’re pissed.
It’s that I am always so thirsty from my meds... so I awaken several times each night to pee. And each time I wake, I find myself bathed in sweat (this is related to whatever is happening with my high white blood cell count). So I get up, pee and then climb back into what is now a cold, wet bed in cold, wet pajamas.
It’s that when I wake each morning, it’s usually to a blazing headache that requires immediate dosing of 1000 mg of Extra Strength Tylenol, and then about 30 minutes later, the headache has maybe been tamped down or pushed around the corner for a while, at least enough for me to get out of bed.
It’s that once that headache is gone and I get out of bed, I’m going to spend a good portion of my day dealing with heartburn and nausea... and even so, I have to eat almost constantly in order to provide my body the calories and specifically the protein (90 grams!) it needs to properly heal. After a lifetime of dieting and starvation, being forced to eat when you still feel full is really a mind fuck. And feeling stuffed *and* nauseous all the time ain’t grand.
And then of course back at Thoracic Park, Dottie, my prehistoric right lung, is still a literal pain in my side. She’s inflamed from surgery, she’s traumatized from collapse and she kicks me with bright pain each time I take a deep breath... but I’m told this is normal and will get better over time. And right now, that time feels positively glacial in speed.
Did I mention the headache comes back several times a day? It slams into my temples and beats behind my eyes and sometimes I just crawl into the shower and sit on the floor and weep while the hot water slides down over my body and down the drain.
Yes, I weep. Because this isn’t just physically difficult. It’s emotionally and intellectually exhausting as well. I’m in the grip of some pretty powerful drugs. These include small-dose opioids for the days when Dottie really isn’t having it, massive amounts of anti-rejection medications o keep my body from attacking my new heart, and high doses of prednisone that cause me to be extremely aggressive, super-grumpy and more than just a little hirsute. Thank God it’s almost Halloween because I look like a werewolf despite the hardest-working tweezers this side of the Rockies.
So sometimes I’m not even sure the things I’m feeling are real or if they are just crazy things these meds make me feel. I’m irritable as hell and exhausted and I just want to sleep...but I want to sleep like I did 5 weeks ago. I want to stay dry and asleep and awaken next to my husband without an imploding head and rioting stomach and sour attitude. And then I want to lie in bed and cuddle with my dogs and cats.
I wish life was actually like the selfies I’m posting to social media, but I’ve always had a knack for looking better than I feel. (I also suffer from a strange compulsion to make everyone think I’m AOK when I’m really not anywhere near any of those letters. I’m more like WXY. But you've likely figured this out by now.)
So... that was quite a bit longer than a “moment,” but yeah, that’s where I am. I am trying to be patient. I am trying to remember that my body has been through almost unimaginable interior trauma and it’s both a war zone and a construction site in there and it’s going to take a lot longer to heal than any of us probably thought.
But these things are easy to pay lip service to— they are much harder to live through.
It’s difficult to not seek day by day improvements. It sucks to have gone through all of this and still get winded walking up a hill. I just want my life back. And actually, that’s a lie. I want a better life than what I’ve had for the past several years and I’ll be damned if that’s not still tantalizingly and maddeningly out of reach.
So yes, I’m here.
I lived.
I’m so grateful.
But it’s hard. And it needs to be okay for me to admit that.
To you, it seems like I’m victorious. Like I’ve beaten this thing. To me, I’m still in the middle of a heart transplant... and there’s no real end in sight.