Free at last!!!

Sorry for leaving everyone hanging! I’ve been meaning to write a health update for weeks, but I’ve just been SO TIRED. I’m not exactly catching up on sleep, just kind of existing in a perpetual state of fatigue, which makes it difficult to sit down and put coherent thoughts together. But I’m having a moment of being less-fatigued for now, so I’m gonna give it a shot!
 
For a couple weeks things were kind of up and down, mainly due to the JP drain. In order to get it removed, the color needed to get lighter (indicating the internal bleeding had mostly stopped), and the daily production needed to come down. Things were progressing nicely until I had a sudden, violent coughing fit shortly before my follow up appointment, which set everything back. At the appointment my surgeon said I probably popped a stitch. Apparently I don’t just have mesh in there, I also have some internal sutures holding everything together. After what I went through with that leftover transplant suture harboring infection and causing these abscesses, I was understandably concerned about putting in MORE sutures, but he reassured me that while the transplant suture he removed was originally intended to be permanent, these sutures and the mesh are dissolvable. While the risk is not zero, it is MUCH lower than with a permanent suture. I was also surprised to find out that each piece of rib that he removed was about 1-2” long! But that does explain the large lump I can see where they inserted mesh to fill in the gap. I guess my chest x-rays are gonna look even more interesting from here on out!
 
Given the increased output and red color of the drain, we decided to leave it in another week. One thing he did do during that appointment though was remove all 39 staples, which was a huge improvement! I didn’t even realize how much of my discomfort and restricted movement was due to the staples. In terms of the drain, I was coming in for a transplant appointment the following week anyway, so we just planned to remove it then. Everything seemed to be going smoothly, until once again the drain output increased and turned red, this time with no clear trigger. Which meant I got to have an unexpected CT scan to make sure everything was ok in there. Thankfully, they didn’t see anything concerning, and the drain output continued to improve over the next several days, so 3 weeks ago I finally got the drain removed! What a relief!! And even better, once I made it through the next few days without any problems, after 3 and a half months I was FINALLY approved to STOP THE IV ANTIBIOTICS!!! Not staying up running infusions until 3am and not being chained to an IV pole 9 hours a day is WONDERFUL! I can’t even describe how relieved Katherine and I are to FINALLY put that behind us!!!
 
I still kept the PICC line, because we wanted to make sure things stayed stable before removing it. A week later I woke up for my regularly scheduled weekly nursing visit, only to see a text message from my nurse saying that someone else would be coming out a bit later that day instead, because my team told them to pull my PICC line! I was SO surprised and SO excited!! I literally started jumping up and down, and Katherine and I had multiple impromptu dance parties in the living room both before and after the nurse came out! I am SO HAPPY to finally be free of medical hardware for the first time since November!!
 
All my various incisions are still tender and healing, and I still have pain, and I am QUITE weak and deconditioned. I get worn out very easily, and unfortunately I’ve been having trouble sleeping, so that’s not exactly helping my energy level. I’m also having off and on GI issues, and while I’ve given up the IV antibiotics, I’m still taking an oral antifungal until at least June, which can have similar side effects. And now Pesach (Passover) is coming, which is stressful under the best of circumstances! But I’ve been taking walks around the neighborhood when I can to build my strength back up, and I’ve even managed walking up the stairs to the 6^th floor (with breaks!), so I’m pretty confident that by the time the holiday starts I’ll be able to manage going out for a few meals that aren’t too far from home. Pesach is not just the holiday of redemption, it celebrates a redemption that happened so fast they weren’t even ready for it! May it also signal the start of speedrunning my own “redemption” and recovery, and even more importantly, the END of being plagued and “enslaved” by pseudomonas!!!

No news is (mostly) good news!

It’s been quite a while since I shared a health update. This time around, no news is mostly good news!
 
Things have actually been relatively calm in recent months. I had a bronch and a sweat test in July, but aside from those and bloodwork every few weeks I’ve actually managed to avoid any other procedures. I haven’t even had any doctor’s appointments! Katherine and I have been taking advantage of the calm to go on outings and little day trips. We went out to a free concert and fireworks for the 4^th of July, visited the beautiful Chinese Lantern Festival, drove to Edison for a cat expo, road a scenic railroad in Delaware, went to Wildwood to check out a tattoo convention, and spent an afternoon at the art museum. We’ve had a pretty busy summer, and still have more outings planned! Definitely a nice change from medical drama!!
 
There is one big thing going on though: Trikafta. I started taking it over a month ago, and it hasn’t gone entirely smoothly. When I first tried it a couple years ago I ended up stopping because it seemed to be making me fatigued and depressed. This time we tried increasing the dose slowly to give me time to adjust, and while I did ok with the first dosage, as soon as I moved up to the next level I started struggling with fatigue and depression again. Right now I’m back to the lowest dose and planning to stay here for a while to really give my body time to adjust before trying to go up again. I don’t want to waste the rest of the good weather and spend the Jewish holiday season being exhausted and depressed, so I won’t be changing the dose until the end of October at the earliest. I do think I’m still having some side effects, such as insomnia and fatigue, which is difficult but definitely much more manageable than what I experienced at the higher dose. It’s really frustrating that there’s this amazing medicine that could nearly “cure” my remaining CF symptoms, but I may not be able to benefit from it due to side effects. I have heard though that for some people the side effects fade after a month or 2, so I’m hoping that eventually I’ll be able to sloooowly work my way up to a full dose. Here’s hoping!
 
This month will be a little more medical, as I have appointments coming up with my transplant team and my endocrinologist. I also have a dexa scan scheduled to check my bone density, since my bones have been compromised by years of steroids. But aside from that I plan to keep getting out and about and enjoying myself as much as I can!

The medically low-key life

Things have been about as medically quiet as they get for me. That doesn’t mean no complications, but it does mean nothing particularly dire. One frustrating thing is that I’ve had continuous lung infections since finishing IV antibiotics. In March I cultured staph, but fortunately it was an easily treatable one that was resolved with oral antibiotics. Then in April I cultured my old nemesis pseudomonas. I haven’t had much in the way of symptoms however, so we haven’t jumped into any drastic treatments yet. I already do a nebulized antibiotic on a 1 month on, 1 month off schedule, and April was my off month, so as long as I remain mostly symptom free we’ll just see if it clears up by the end of May. I’m also having an appointment with my ENT to see if there’s anything else we can do with my miserable sinuses to keep the infections from dripping down into my lungs.
 
The main symptom I’ve had is fatigue, but it’s hard to tell how much of that is from the infection and how much is just my life. I’ve struggled with poor sleep for decades, but I definitely feel like it got worse after transplant, so that obviously contributes to fatigue. I think I’ve heard that insomnia and fatigue aren’t uncommon after transplant, so it could just be transplant life. And I’m sure battling a pseudomonas infection doesn’t help. All I know is that I’ve been VERY tired lately, which makes it really difficult to get anything done and kinda sucks the life out of me. Here’s hoping that improves along with the pseudomonas infection.
 
I also had my first post-transplant dermatology appointment. You’re supposed to have one every year after transplant, but due to Covid we pushed off most non-essential appointments. Penn now has a special transplant dermatology program though, and they’re good about making sure we all get in to see them. I knew that transplant recipients are at higher risk for all kinds of cancers, but I didn’t realize that the risk of skin cancers in particular is ridiculously high. Thankfully my skin looked good this time, but the doctor said that 3-5 years after transplant is when they typically start seeing skin cancers. And guess whose 3 year lungiversary is this week?? So that’s another worry to add to my long list of fears. I’ll definitely be more cautious about covering up and using sunscreen!
 
On the non-medical front, we unfortunately have some sad news. After having a bad fall last summer and then struggling for months with one medical issue after the next, Katherine’s mother passed away last month. It was a strange mix of unexpected and expected: unexpected, because before the fall she was doing fine, and expected, because she declined for months before finally being sent home on hospice. Things were pretty awful at the end, and it was a mercy when she finally passed. It’s been difficult, but Katherine is holding up ok, and we all hope her mother is finally at peace.
 
On a brighter note, I’ve really been appreciating being able to get out and socialize a bit instead of being on full Covid lockdown. I went out for half of the holiday meals on Pesach, which was AMAZING and made the holiday SO much more enjoyable. I’ve also been going out for some Shabbos meals. And in an effort to get some exercise, I started taking lessons with my friend Abrielle Fuerst, who teaches martial arts professionally. So that’s guaranteed once a week that I get out of the house and see a friend, and I get to learn how to be a ninja on top of it! I am playing with NUNCHUCKS, people! Watch out!