More procedures

It’s probably not a good sign when a medical professional looks at your CT scan and immediately says, “Oh you poor thing!”

I saw the ENT on Monday to check on my terrible sinuses. They’re always bad, but over the last few months I’ve been coughing a LOT more, which may be due to post-nasal drip. I’ve also completely lost my limited remaining sense of smell. Additionally, I’ve had recurrent infections in my lungs, which may be coming from my sinuses. The CT scan showed that my sinuses are all blocked up and full of polyps, which is kinda standard for CF. Between the ages of 19 and 30 I had sinus surgery 4 times to clear things out, and I only stopped due to feeling that the last couple surgeries didn’t give me enough relief to be worth the difficulty. I mostly just got used to having miserable sinuses, and at this point I haven’t had surgery since 2009.

My transplant doctor has been talking about sinus surgery to clean me out and reduce the risk of lung infections. The problem is that there’s no guarantee as to how much surgery will actually help me. It’s not the worst surgery in the world, but it’s definitely not fun, and it can take months for everything to heal up and see any results. A big deciding factor for me was my sense of smell. The ENT said the damage might already be permanent and surgery might not help, but not having surgery guarantees that the damage will become irreversible. He also said that based on my CT scan, I’ll definitely feel SOME improvement from having surgery, it’s just unclear how much. The only thing we can do is try and see what happens, so I’m currently scheduled for sinus surgery in July.

Even though it was my choice, I’m having all kinds of conflicting emotions about it. For one thing, any surgery is a big deal when you’re immunosuppressed, and it’s typical to get prophylactic antibiotics. So I’ll be hospitalized for (hopefully only) one night afterwards for observation, and then sent home with a PICC line for a few weeks of IV antibiotics. At this point it’s been over a year since I was on IV antibiotics, which is wild considering I used to get them 3 times a year for a month or 2 at a time! So on the one hand I’m super grateful for how much healthier I am, but having to do IVs again is stirring up old memories and fears, and part of me is bitter about having to revisit that part of my life. It’s also hard to force myself to go through what I know is an unpleasant procedure and recovery process without knowing how much benefit I’m actually going to see. It’ll be extremely upsetting if I go through all this and it doesn’t end up improving my quality of life. But there’s no way to know what the outcome will be, so I just have to try and hope for the best.

It also feels like my life these days consists only of sitting at home or going out for medical appointments and procedures. Covid life is definitely getting to me, particularly because no matter what the governor says, I’ll still be on my own personal lockdown due to being in a high risk category. As everything opens up I’ll need to be even MORE cautious, as there will be more spread in the community. It’s frustrating to go through all that transplant entails only to have life look dismayingly similar to how it did back when I was sick. It’s wonderful to be able to breathe, but it would be nice to experience more from life than just managing medical issues.

Speaking of which, tomorrow is bronch day. Which means I had to go get a Covid test today, because you can only go into the OR if you’re cleared. So THAT was fun. Apparently I’m currently on the monthly Covid test plan: this month for the bronch, next month for sinus surgery, and the month after that for my Pulmonary Function Test (PFT). Boy do I know how to party!!

And so my life of lockdown and medical shenanigans continues. Can’t wait for the day that I get to leave at least some of this drama behind and finally get back to LIVING!