Hello IV antibiotics my old friend

Alright sinuses, that is ENOUGH out of you!

Last Thursday I had a bronchoscopy, which thankfully went well. Once again the airways were narrowed and had to be dilated, so it looks like I’ll still be getting regular bronchoscopies for the time being. Thankfully the recovery wasn’t too bad this time. With that done, I thought my next big medical adventure would be sinus surgery in July.

I thought wrong.

During bronchoscopies they always collect a sputum sample and check for infection, and this time pseudomonas and staph showed up. That’s not great, but it also isn’t the first time I’ve had lung infections post-transplant. These infections are most likely coming from my terrible sinuses, and we’re hopeful that sinus surgery will help significantly. Initially my doctor didn’t think I needed immediate treatment, and planned just wait for the IV antibiotics I will receive after sinus surgery. However, since the bronch I’ve noticed a slight increase in congestion, and this week my bloodwork showed an increase in white blood cells, which indicates that my body is fighting an infection. That’s a problem, since my immune system is suppressed and far less able to overcome infections. Additionally, once my immune system is activated it could easily notice that these lungs aren’t original parts and reject them. That means it’s time to help my body out and zap me with antibiotics to get rid of the infections and send my immune system back to sleep.

This morning I got to have YET ANOTHER Covid test (that’s #3!) so I can go in to get a PICC line placed tomorrow morning. Once that’s in I’ll get started on 10 days of home IV antibiotics to wipe out the nasties in my lungs. After that the PICC line will stay in until my sinus surgery, and I’ll do another round of IV antibiotics afterwards to help clear out my sinuses and protect me during recovery.

I’m definitely not thrilled about having a PICC line for over a month. They’re uncomfortable, and I can’t take a normal shower the whole time as I have to be extremely careful not to get the dressings wet. I’ve been feeling pretty cranky about the whole situation. On the other hand, compared to what I was dealing with before transplant, this is nothing! I’m trying to remember that I know from experience that things could be SO much worse, and that this is a relatively minor bump in the road. Even with the procedures and issues I’ve had to deal with, my post-transplant recovery has really been going remarkably well, and I am SO grateful for that.

Despite everything, Katherine and I got out of the house and went on a nice outing today. Our 3 year anniversary is this Saturday, but we decided to celebrate today before the medical shenanigans get underway. We picked up takeout in Philly and took it to Penn’s Landing for an outdoor dinner on the waterfront. It was great to get out for a bit and do something halfway normal for a change! It’s so important to remember all the things that make this fight worthwhile.

So here I go, back into the fray, once again battling my nemesis pseudomonas and its friends. I hope those little unwelcome invaders are ready, because they’re about to be evicted!!

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!