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!!!