A mixed bag

It’s been a bit of a mixed bag around here.

The good news is, we found an effective antibiotic that doesn’t have serious side effects. The bad news is, it can only be given in the hospital. Apparently this is a really new medication, and home infusion companies don’t want to touch it. It’s also very expensive, so even if we could find a home infusion company, insurance won’t pay for it. In the hospital, however, insurance pays a standard daily rate which covers all treatment and medications. This almost certainly costs more than just paying for the medication at home, but no one ever accused insurance companies of being sensible. I started the new medication on Friday, so I’ll be inpatient until August 27^th for a full 2 week course. I’m actually extremely lucky that I didn’t need IV antibiotics before now, since the only other antibiotics my Pseudomonas is susceptible to are either ototoxic (toxic to the ears) or nephrotoxic (toxic to the kidneys). I already have antibiotic-induced tinnitus and mild hearing loss, and my anti-rejection meds strain my kidneys, so I’m fortunate that this other antibiotic came out!

In other news, as so often happens, my stomach decided to jump on the bandwagon and start making problems as well. Despite the fact that weeks of IV antibiotics basically gave me an unwanted colon cleanse thanks to unpleasant side effects, my stubborn CF bowels have somehow managed to start working on a blockage anyway. Fortunately we caught it before things got too bad, but I’ve been very nauseous for the last couple days. We’ve been slamming me with laxatives since last night, so that’s always a joy, but I think I’m doing better now. Here’s hoping that tomorrow I won’t wake up nauseous for a change!

In other news, as of yesterday I started taking… Trikafta! That’s the fancy triple combo CF drug that came out last year, which has been life altering for many CF patients. That’s also the drug I waited years for, since the previous genetic modulators didn’t work on my CF mutations, only for my lungs to crash and burn JUST before it came out. Trikafta won’t work on my lungs anymore since they have different, CF-free genetic material, but CF is a full body experience and it can still help with other problems. We’re hoping it will improve my sinuses and cut down on sinus infections, thus reducing the risk of lung infections. It might also help my bowels, which would certainly be nice. The downside is it can have unpleasant side effects, sometimes to the point that people can’t continue taking it. Right now I’m on a half dose to see how it goes. It also interacts with my anti-rejection meds, which is why we haven’t tried it before now. So we’ll need to monitor my bloodwork very closely and adjust dosages as necessary to keep everything safe.

Starting Trikafta now definitely has a bit of a “too little too late” kind of feeling. If it had come out a year earlier, back in 2018 when my lung function was still at 60%, it might have done amazing things and my life now could be completely different. I’ve mostly resigned myself to the fact that for some reason my life was meant to follow a different path, but sometimes it still stings. But hopefully it can help me keep these lungs going for a long time, and maybe reduce some of my day to day CF symptoms in the bargain.

On the plus side, I’m very glad that they managed to transfer me to my usual floor, Silver 11. They know CF and lung transplant inside out around here, and my med schedule has gone much more smoothly. And they know ME, which is really nice! Disappointing as it is to be inpatient, it’s been nice to see everyone and tell them how GOOD I’ve been doing overall since my transplant. The last time I was hospitalized on this floor was just before transplant, when I could barely get out of bed and things were pretty dire. Meanwhile, yesterday I walked 17 laps around the nurse’s station at a pretty good pace! Everyone has been very happy to see how healthy I look now!

So that’s the story around here. I’m in it for the long haul, but hopefully Cefiderocol will finally kick this super stubborn Pseudomonas to the curb!