It’s
been a LONG time since I wrote a health update. That’s partially been because,
thank G-d, things have been going pretty smoothly! That doesn’t mean NO
complications, just nothing major. Honestly, just maintaining a healthy
baseline involves a bunch of medical stuff. I have to get bloodwork at least
once a month, and sometimes more often if something is out of whack and needs
to be monitored a little more closely. That something is usually either my
Tacrolimus (anti-rejection med) levels being off and requiring a dosage
adjustment, or my kidney levels being worse than usual. My kidneys have been
struggling a bit, which is expected thanks to the Tacrolimus, but thankfully
are still chugging along at a reasonable rate. We recently discovered that they
still respond well to extra hydration, so if I drink A TON of water (which is
really hard for me!) my levels are almost normal. Aside from bloodwork, I have
a bunch of appointments that I need to have on a regular basis. Transplant
clinic at least every 3 months, endocrinologist every 6 months, dermatologist
at least annually, ENT at least annually. Then there are the minor procedures,
such as getting my feeding tube changed every 6-12 months. I no longer require
supplemental nutrition, but I DO rely on the feeding tube for additional
hydration overnight to maintain my kidney function. Sometimes I’m on top of
changing it and it’s just a routine appointment, and sometimes it gets slightly
dramatic, such as a few months ago when I was overdue for a change and then
accidentally yanked it half out of my stomach, resulting in it painfully
sticking out of me overnight until I could get in for an emergency appointment
the next day. I also have a Reclast infusion that I get once a year to try to
offset the damage that long-term steroid use has done to my bones. And of
course aside from all this, I take a ton of medication every day to stave off
rejection and keep my body functioning. So even when things are medically calm,
there’s still a lot going on!
I
think the biggest complication that I’ve had was at a dermatologist visit last
year. The risk for all cancers goes up significantly after transplant due to
the anti-rejection meds, but the risk of skin cancer is PARTICULARLY high. At
my last appointment they found that 3 small bumps on my face were pre-cancerous
and needed to be removed. It wasn’t a big deal at all, the doctor froze them
off during the appointment and I just had to deal with some unpleasant
blistering afterwards, but even pre-cancerous was still a scary thing to hear.
I have to be very careful about sun exposure and check my skin regularly for
anything unusual, and of course keep up with regular dermatology appointments
to keep an eye on things.
There’s
another reason I fell out of writing health updates though, and that was thanks
to Trikafta. Trikafta is the groundbreaking CF drug that came out shortly after
my transplant. My doctors wanted me to take it to improve my miserable CF
sinuses and reduce the risk of infections dripping down into my lungs. The
first time I tried taking it about a year after transplant, I got REALLY
depressed and fatigued, so we discontinued it. We decided to try again at a
lower dose in July 2022. I seemed to do better at the lower dose, but when we
tried to increase it I immediately had a bad reaction, so we dropped back down to
the initial dose. I still ended up struggling with depression and extreme fatigue,
but wanted to stick it out and see if the side effects faded with time. In
January of 2023 we tried adding an anti-depressant to see if that would help with
the side effects and allow me to stay on Trikafta. By June of 2023, however, it
was clear that the depression and extreme fatigue were not going away. I
decided it wasn’t worth being miserable and dysfunctional just to maybe improve
my sinuses, so we discontinued the Trikafta and have no plans of trying it
again. It took a WHILE for things to improve even once I stopped taking it, but
thankfully I’m doing much better now. I still struggle with fatigue, but it’s
back to the level I was dealing with before Trikafta, and my mood is MUCH
better. It’s a shame that I waited so many years for a drug that targeted my
genotype, only to be unable to tolerate it. At least it makes me feel a little
better though that I didn’t end up missing out on anything by getting a
transplant before it came out.
My
only other “complication” is that after not catching any infections for over 4
years post-transplant, I managed to catch 2 colds this year, one in January and
one in April. My symptoms were relatively mild, but with any infection there’s
always the risk that it could trigger rejection. Thankfully I did NOT have any
rejection after either illness – and in fact have not had any rejection since
my transplant! Hopefully I can continue that streak, and also keep myself
infection free for at least the rest of this year!
That’s
pretty much what’s been going on the last couple years. Now that I’m finally
caught up, I’ll try to be on top of writing health updates more regularly – but
let’s hope I won’t have much to talk about!!
