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!

Covid shot #1!

I got my 1st Covid shot! Thank you Frank for helping me get on the waiting list at Rite Aid so I don't have to wait another 1-2 months for an appointment! They had some no shows today and needed to use the doses before they expired, so I was able to jump in for a last minute appointment. The perks of being disabled and having an open schedule!

Getting vaccinated won't actually change how I live my life, since we have no clue how effective the vaccine will even be for me. Vaccines work by creating an immune response, and that's something my body doesn't do well since I'm immunosuppressed. I'll still need to be extremely cautious since it's likely I'll remain very susceptible to the virus. My vaccine definitely won't be 95% effective, but hopefully it'll do SOMETHING, and something is better than nothing.

What I really need is for Katherine to get vaccinated, but unfortunately living with a high risk person is not a qualifying condition here. She's stuck at the bottom of the list with all the other young, healthy people.

But even with all the caveats, this is very good and exciting news! I'm very grateful, and I'm hopeful that we're finally inching our way closer to normalcy!