Before I got my transplant I heard a lot about what life would be like with new lungs. Friends of mine who have had lung transplants told me all about their experiences and my wonderful doctors tried to prepare me for what to expect after surgery. All of them threw around adjectives and phrases like "wonderful", "exciting", "crazy", "unbelievable", and probably the most common description of all: "like a roller coaster."
I would explain the roller coaster analogy more or less like this: when I'm healthy with my new lungs, the highs are amazing. It's exhilarating and fun and new and wonderful, all at the same time. When something goes wrong, though, the dips and drops can be scary. I don't understand transplant like I do CF. It's 2 years of experience up against 30 (or at least 28, if you only want to count pre-tx CF years). Even minor speed bumps in the transplant journey (of which there are many) can seem like gigantic mountains if I'm already feeling fragile, or worried, or just plain confused. And for the most part I think I actually do a darn good job of keeping these scary moments in perspective -- or at least of keeping my outward calm even when inside I'm wishing I could just curl up in a corner. I am a CFer, after all. I'm pretty well practiced in the fine art of survival.
But there are some moments post-tx that just continue to baffle me, even as I learn and adjust and remember to breathe through the tough parts (upside: I CAN breathe through the tough parts now!). There are moments when this whole game of organ musical chairs seems just a little too strange for my taste. And, of course, there are moments when I'm caught off-guard and clueless and just flat out unsure whether I should laugh at my dumb luck or be scared out of my mind about the possibilities for error. So I figure hey, why not try a little bit of both?
This past Monday I woke up feeling somewhere between "huh, I think I have a stomach bug" and "wowza, I am never eating Chinese food again. Ever." Then again, sour stomach isn't exactly uncommon in CFers, and occasional nausea is pretty par for the course in transplantland on top of that, so I actually wasn't that concerned. I remember thinking that at the very least, if nothing else, I was going to man up and take my f-ing transplant drugs. You know, like a boss. Like a good patient. Like a hard. core. CF warrior.
So I did. I took all of them, in fact, and with an emphasis on my all-important immunosuppression. I took my cellcept, took my prednisone, and I took my prograf.
Got that? I took my prograf.
Weirdly, as the day wore on I seemed to feel weirder and more out it, but I still didn't have any registered symptoms beyond my stomach -- no fever, no chills, no anything else that might have been a major red flag. I was fine, and I was taking my drugs like a GOOD PATIENT.
And then I fell down the stairs.
There are two floors in my apt, but I live almost exclusively on the top one. On Monday I had to go down to the lower floor to get something, and on the way down I tripped. The immediate cause was a stray dog toy, although why I didn't see it seemed like anyone's guess. But I didn't see it, and I did fall, and I crashed headfirst into a bookshelf. When I stood up a few seconds later I was bruised up, I had a skinned knee, my dog was cowering in the corner, and I had somehow managed to rip off half my eyelashes on one eye. Yes, you read that right. Half the eyelashes on one of my eyes are now gone, completely, from the root.
Of course, like any sane person my immediate reaction was not to be grateful I hadn't hurt my eye even worse or to worry about the wounds I had covering my body, but to hit the laptop. Specifically, my first act was to google "do eyelashes grow back?" like the wise and not at all superficial zen master that I am. Turns out, this is a common problem, apparently most often caused by accidents while using an eyelash curler. In my sister's case, she once burned off her lashes, as she later told me on the phone. And yes, they do grow back. It takes up to 6 weeks.
Anyway, that was Monday, and after all that excitement I pretty much decided to quit while I was only slightly behind. Tuesday I spent all day at the hospital, first for clinic and then for a desensitization. I felt okay that day, but still a little strange. My doctor called me "fragile" during my appt, which was probably an astute observation. At any rate, I did my appts and went home 7 hours later, only to receive a late-night call from my doctor telling me my prograf level was...drumroll...50.
Normal, btw, is like 8.
Fifty is obscenely high. So high we actually thought it was a fluke at first. I didn't take the drug for 48 hours, retested, and my level was still 27. In other words, it wasn't a fluke. Of course, given that a main symptom of prograf is feeling fuzzy and a little bit out of it, at least the super high level means that I'm probably not just losing my mind tripping and acting "fragile." Or, you know, at least not yet.
Thankfully, my level is going down. My kidneys are, as always, proving their worth and being generally awesome sauce about the whole ordeal. And my dog is grounded until he starts putting his toys away properly.
But, kinda like the fall, we're still not entirely sure what exactly caused this huge jump in my prograf levels, which usually run super low. And, like the fall, we're grateful that things weren't any worse even as we search for better answers. But both the high and the fall are reminders that life post-transplant is most definitely a roller coaster, and the sudden changes in altitude can sometimes come out of nowhere.
As for me, I'm just grateful that I'm here, I'm breathing, and even my eyelashes will (eventually) grow back.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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