Rosh Hashana was a week ago, so tis’ the season to take an accounting of the previous year! One year ago, my intense joy and gratitude for being alive after an intense life or death battle was beginning to be tempered by the difficulty of dealing with various post-transplant complications. Transplant complications unfortunately became a bit of a theme for the year, though thankfully nothing TOO severe. Nonetheless, life was already pretty stressful even before Covid hit. But I definitely didn’t expect to go into my second Rosh Hashana after transplant overwhelmed and exhausted from a far more subtle yet just as real months-long struggle for survival.
This has been my first year of post-transplant life. It has been marked by incredibly good progress, including a terrific level of lung function and no hint of rejection. But it definitely hasn’t been smooth sailing. I became diabetic due to my medications and had to learn how to manage my blood sugar with insulin. I spent last September through November almost incapacitated with terrible joint pain caused by one of my medications. I’ve been getting bronchoscopies every 1-2 months because my airways keep closing up. I’ve had repeated lung infections, which led to weeks of IV antibiotics, and ultimately resulted in pneumonia and a 2 and a half week hospitalization.
I also have CMV. CMV (Cytomegalovirus) is a common virus that many people carry asymptomatically. One of the reasons my transplant was considered high risk is because my donor had CMV, while I did not. Things were so dire before transplant that I didn’t consider turning down these lungs for even a second, but this means that we knowingly put a new virus into an immunocompromised person. Due to this I was on antiviral medication for the first year after transplant. After a year without any signs of CMV we tried stopping the antiviral, but a few months later CMV showed up in my bloodwork. I’m now back on the antiviral and likely will be for life. This isn’t a big deal, but a donor-recipient mismatch for CMV increases the risk for chronic rejection, as does the fact that I keep battling Pseudomonas infections.
We also don’t entirely know the current status of my Pseudomonas infection. I haven’t noticed any overt symptoms, but I also didn’t notice that I was developing pneumonia until I started running a fever. I’m scheduled for a follow up CT scan in 3 weeks to make sure the pneumonia is gone and that my lungs look ok. A week later I’ll have a bronchoscopy and will probably have my airways dilated once again. They’ll also take a sputum sample, which will show whether or not I still have Pseudomonas in my lungs. I kind of have an undercurrent of anxiety about Pseudomonas possibly lingering in my lungs, since it very much snuck up on me last time. I won’t really believe it’s gone until we get clear test results.
Of course, even if it is gone, it will never be GONE gone. There’s no way to clear out every nook and cranny of my sinuses, which are still full of infections and sticky CF mucus. Hopefully that’s improved now that I’m taking Trikafta, but when you have CF it’s almost impossible to fully eradicate infections like Pseudomonas. The question is whether we can improve my sinuses enough to keep them from repeatedly infecting my new lungs and putting them at risk. Only time will tell.
Pandemic life hasn’t exactly been kind to me. On the one hand, in some ways I had less to lose than a lot of people. My world was already pretty small, and I was already abiding by many of the restrictions that were new and surprising for everyone else. On the other hand, my life is very much in danger from this virus, which means I need to be even more careful than most people, and I’ve known from the start that I’ll need to do it for longer. On top of that, I’m keenly aware of the fact that I’m living on borrowed time and have no clue when the clock will run out. Most people anticipate many full years after the pandemic during which they can make up for the time and experiences they’re missing now. I, unfortunately, don’t have their confidence. It’s extremely hard to watch my precious post-transplant time being wasted by the pandemic. I have these wonderful new lungs, I have this precious gift of extra, unexpected life – but right now I can’t do anything with them, and I have no guarantees about how much time I’ll have left to enjoy them once the pandemic is over. It’s extremely frustrating.
I’m very, very good at anticipating and stressing about all the things that could possibly go wrong. This is particularly unfortunate after transplant, because it’s a LONG list! With Covid, I have fewer opportunities to distract myself with joyous life experiences, and more space to sit in my fears. It honestly hasn’t been great.
5780 has been an unexpectedly difficult and overwhelming
year on multiple levels. Hopefully things will turn around in 5781!
