Freedom!

After 6 straight weeks I am FINALLY IV-free! Goodbye Zosyn, you won't be missed!

Smelling the roses!

I CAN SMELL STUFF!!!! I've literally had NO sense of smell whatsoever for MONTHS, but as of tonight I can smell EVERYTHING!!! I'm currently running around the apartment sniffing random things and grinning like a maniac! SURGERY WORKED!!!

Home sweet home!

I'm home! My nose is still bleeding and I feel disgusting and I'm utterly exhausted, but I'm home. And on the plus side, my pain is already MUCH better. Now it's time to sleep alllll Shabbos!

Small victories

Here's a sweet tidbit: Every time HUP discharges a Covid patient, they play a snippet of Here Comes the Sun over the intercom as they're walked out. So far I've heard it twice!

Post-op update

Surgery went well, of course I'm in pain, but I've definitely been through worse. Now for the 24 hour nose bleed and not being allowed to blow my nose, fun stuff. I'm settled into my hospital room, and hopefully should be discharged tomorrow. And I just got some Percocet so hopefully life will be better soon.

Slogging towards surgery

Well, I haven’t exactly been living my best life lately.

10 days of IV antibiotics was not fun. I started off with some (thankfully minor) PICC line issues, and ended up getting 3 dressing changes during the first 5 days, so that was great for my sensitive skin. Then the area around the suture holding the PICC in place became red and painful, so the suture had to be removed. I was mad that they put in a suture anyway though, so that was actually a relief. And then there were the side effects. The antibiotic absolutely trashed my digestive system, which wasn’t fun. I was also super exhausted, and had some weird unexpected reactions like random heart palpitations. Nothing too terrible as potential side effects go, but it wasn’t comfortable or enjoyable.

I was also hooked up to a pump 24/7. Due to the fact that we were fighting multiple infections, including a strain of pseudomonas that is resistant to most antibiotics, they could only find one antibiotic that would be effective. That antibiotic, Zosyn, has to be given every 6 hours. I had 2 options: I could run the infusion myself every 6 hours using a little self-infusing device called an Eclipse ball, which would mean never getting more than a few hours of continuous sleep for 10 days straight. Or I could get a pump that would run the infusions automatically and only needed to be set up once a day, but I could never take it off. I’ve used the Eclipse balls for 6-hour dosing before, and I about lost my mind from sleep deprivation, so I tried the pump this time. It weighed about 2 pounds and came in a little carry bag. It was definitely annoying to cart around all day, but that was way better than never sleeping, so I think I’ll stick with it for future infusions.

Fortunately, it worked. After 10 days I was less congested and my white blood cell count came down. It’s funny, after all the congestion I had for decades pre-transplant, I actually barely even noticed the little bit of congestion I had this time around until it cleared up. Congestion is so normal for me that I forgot these lungs aren’t supposed to have any!

And now I’m gearing up for the next round: sinus surgery. Tomorrow I get to have Covid test #4, and Thursday morning I go in for surgery. I’ve been out of sorts and sleeping really poorly recently, and I think I’m stressing about surgery. On the one hand, I’ve done it before, so I know it’s not a huge deal. On the other hand, I’ve done it before, and I know that recovery isn’t pleasant. I also haven’t done it in 11 years, so I don’t entirely know what to expect. And of course I have no clue how it will go and how much improvement I will see. It’s funny, I’m actually stressing more over this comparatively minor surgery than I did for my lung transplant! Before transplant I was SO sick that I didn’t even have the physical or mental energy to stress about it. I just wanted anything that would get me out of the hell I was living through. It also happened so quickly that I barely had time to think about it, since I was only actively on the list for 3 weeks. So this is the first time in years that I have both the time and the mental capacity to anticipate and be stressed about upcoming surgery. I’m not enjoying it.

I’m also not enjoying the fact that I’ll be back on Zosyn for 3 full weeks after surgery. 3 more weeks of this annoying PICC line, 3 more weeks of side effects, 3 more weeks of being attached to a pump 24/7. And of course this is all on top of a global pandemic!

Overall, it’s shaping up to be an incredibly annoying summer. I REALLY hope this all ends up being worth it!