2 year update

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!!

And for today's medical misadventure...

I’m having a day.

It’s been quite some time since I wrote a health update. Don’t let that fool you, my life is still an endless litany of medical shenanigans, I just don’t always have the energy to write about them. Remember how excited I was back in December when I was full of energy and iron infusions? Unfortunately, that didn’t last long, and I’ve been back to being tired and listless. After a few weeks my hemoglobin level and some other numbers still didn’t show significant improvement, so I did another 3 weeks of iron infusions starting March 1^st. This time, however, I didn’t even get a temporary burst of energy. It can take a few weeks for iron infusions to have an impact, so hopefully things will pick up eventually, since my doctor isn’t terribly keen on going for another round if this one doesn’t work. Apparently pseudomonas feeds on iron, so he doesn’t want to over-iron me and give it a chance to dig in even deeper. Of COURSE my medical needs are complex and conflicting, simple would be BORING.

In February I saw my ENT, and he was very pleased with how my sinuses look. I also had a regularly scheduled bronchoscopy, and it actually went really well! The doctor said my airways look much better and he didn’t have to do much dilation. He also said that I probably don’t need to continue scheduling regular bronchs, and that I can just have them as needed instead. And for the first time in ages, pseudomonas did NOT turn up in my sputum sample! So it seems like some things are FINALLY starting to behave!

I also had a day in January when I got to run to Philly for a last minute doctor’s appointment because I developed painful lumps at the end of each transplant incision. Fortunately they weren’t a big deal and are just permanent sutures that for some reason decided to get irritated. That’s transplant life; unexpected, random medical issues that need to be addressed IMMEDIATELY just in case they turn out to be something significant. It really is a full time job.

But none of that is why I’m having a day. Today, I woke up in a puddle because my feeding tube leaked. This happens sometimes and is usually just an annoyance, but today it decided to turn into a Super Annoyance, because apparently my feeding tube is BROKEN. I have what’s called a “button,” which is small and low profile, and has to be attached to a connector tube in order to hook up a feeding bag. Well this morning the part where the connector goes decided to pop right out, leaving the tube wide open with no way to close it, with gastric juices leaking out. Gross!! I tried taping it back into place, but it wouldn’t seal and continued leaking. I tried unsuccessfully to find something to plug up the hole. I tried taping the whole thing up, first with transpore tape (still leaked), then with flex fabric bandaids (better, but still leaked after about an hour). Finally I tried shoving an earplug into the hole to seal it, and then taped THAT all up with flex fabric bandaids. SUCCESS! Just call me MacGyver!

So now I’m walking around with an earplug shoved into my now-useless feeding tube until I can get it replaced. It was not a good start to my day, especially since it’s unclear how long it will take to get an appointment with interventional radiology to fix the situation. I actually used to be able to replace my feeding tube myself, but that was back when it was a simple G tube which went straight into my stomach. I now have a GJ tube, which has a long tube that needs to be inserted into my small intestine. The advantage of the GJ is that it’s less likely to cause reflux, which could be aspirated while sleeping and potentially cause pneumonia. The disadvantage is that replacing it is a whole procedure. I’ve already been stressed and cranky about the fact that Pesach (Passover) is in less than a week, and I REALLY didn’t need to add annoying and unexpected medical shenanigans to the mix. But for some reason, Hashem has decided that is in fact EXACTLY what I need, so here we are.

Pray for Katherine. Dealing with Pre-Pesach Stressed and Attitudinal Eliana was already a trial. Dealing with Leaky Feeding Tube Eliana on top of it? Nobody deserves that!

So that’s my latest medical misadventure. Hopefully it will be resolved soon!