Fail

Welp. After 4 weeks of IV antibiotics, Nodsferatu has shrunk from 1.6 x 1.5 cm down to... 1.5 x 1.3 cm. Pretty sure we can call that a fail. The MRI results came back Tuesday morning, various specialists spent the rest of the week discussing them, and they still didn’t have a plan by the time I had my follow up appointment with Infectious Disease Thursday afternoon. I’m SO extremely over being complicated. It would be so nice to NOT require lengthy multi-disciplinary discussions all the damn time, but here we are. My Infectious Disease doctor let me know that they were leaning towards surgery, but were waiting for my transplant doctor to approve it. In the meantime she extended the prescription for my IV antibiotics for another month while we figure out what’s going on.
 
A few hours after that appointment, my transplant NP called and let me know that everyone finally agreed on surgery. Unfortunately, she also told me that my transplant surgeon would NOT be doing the surgery, because he’s moving to Georgia and today is his last day. This was very upsetting news, as when a different surgeon cleaned out abscesses on both sides in 2022 he did not find any sutures, but last year when my transplant surgeon did the debridement on the right side he successfully found and removed a retained suture that was likely harboring the infection. We suspect that there is also a suture on the left side, and if we can’t find and remove it I’ll probably end up having this problem over and over again. She did let me know that the doctor who is taking over for Dr. Bermudez as director of transplant is excellent and will be involved in my case. I strongly requested having a transplant surgeon do this surgery and try to find the suture, and she agreed to advocate for me. But between the transition of care and the upcoming holidays, it’s currently unclear when surgery will be.
 
So now I’m waiting for surgery, which will be complicated and have additional risks due to the damn thing being on and pressing into my lung. It’s expected to be invasive and painful, and I will likely have a wound vac again while I recover, which is also painful. In the meantime I’m still on IV antibiotics, since at the very least they’re preventing the infection from getting worse, and I know that I will also need at least 2 weeks of IV antibiotics after surgery to clear any lingering infection. I’ve already been on IVs for over a month, so I’m guessing when all is said and done I will have been on IV antibiotics for at LEAST 2 months, and possibly longer. Plus a painful surgery and recovery in the middle.
 
But hey, I don't have cancer, so yay I guess?
 
On the one hand, I’m kind of glad that we’re finally moving forward with surgery, because I want this damn thing OUT of me already. On the other hand, I’m pretty irked that we wasted a month faffing around with IV antibiotics only to end up here. It would be one thing if it was the first time and we couldn’t anticipate this outcome, but it’s very much NOT the first time, and I was pretty sure IV antibiotics alone without even draining the damn thing wouldn’t cut it. Apparently my transplant doctor felt the same way and has been advocating for surgery from the start, but unfortunately she doesn’t get to call the shots here. So Katherine and I just exhausted ourselves with this infusion schedule for almost no reason, and have to continue doing it indefinitely. I definitely am not happy about the whole situation.
 
I also realized recently that I have spent WAY too many Chanukahs dealing with medical issues. Before transplant, I was in the hospital on Chanukah in both 2017 AND 2018. Last year during Chanukah I was post-op and had a wound vac, IV antibiotics, AND caught RSV. And now here I am, sick again on Chanukah, and mostly unable to go to any festive events even if I did have the energy for them since they mainly occur during my 4-7pm infusion. In addition to that, December 2021 is the first time I ended up in the hospital due to a burst abscess, but at least that time it wasn’t during Chanukah. Apparently this is NOT my time of year!
 
I’m beyond exhausted and feeling pretty beat down right now. But somehow, despite that, I scraped together some energy last night and made latkes from scratch. I usually make donuts too, but I think that’s asking too much from myself for this year. Fortunately I was able to get some custard donuts from Shoprite, and that will have to be enough. So I’m lighting my menorah, playing Chanukah song playlists, eating delicious fried foods, and putting one foot in front of the other. Hopefully the Festival of Lights will bring some light into my life and be the beginning of the turn around I’ve been waiting for!

Slight bump in the road

Of course things couldn’t just go smoothly, that would be BORING, and we all know that’s not how I roll.
 
To be fair, as complications go this one is more of an annoyance, and it’s not a completely unexpected one. In my last update I mentioned that they gave me a midline instead of a PICC line, because they initially didn’t realize I had an abscess and thought a 2 week course would be sufficient. In a not-completely-surprising turn of events, yesterday after exactly 2 weeks the midline decided to break. The unexpected part is HOW it broke. It flushes fine, but when I try to do an infusion it will only run if I hold my arm at a VERY specific angle. I had a dressing change the day it went wonky, so presumably something got jostled and now the end is blocked JUST enough to prevent a gravity drip. Holding my arm in one position wouldn’t be a problem if my infusion only lasted half an hour, but keeping your arm elevated and still for 3 hours straight, 3 times a day, is a bit much. Fortunately Interventional Radiology was able to get me in for an appointment tomorrow morning, so I’ll be ditching the midline and replacing it with a shiny new PICC, that hopefully will behave itself and NOT give me a blood clot this time around.
 
There has also been a slight change of plans regarding my treatment plan. Initially they wanted to drain the abscess, but Interventional Radiology said that it’s too small and in too difficult of a location, and that the slight potential benefit wouldn’t be worth it. The thoracic surgeon and my transplant doctor also consulted with my transplant surgeon, and they agreed that going in surgically wasn’t a great idea right now, as it would be a very painful and invasive procedure. And as my NP pointed out, surgeons like doing surgery, so if a surgeon tells you not to do surgery then you’re probably better off listening to them. So instead we’re just going ahead with 4 weeks of IV antibiotics, and then doing another MRI to see what kind of impact that had. Hopefully things will improve enough that I won’t need surgery, though I won’t be the least bit surprised if they end up extending the antibiotics beyond 4 weeks. I still have 2 weeks to go, so here's hoping the antibiotic is doing its job!
 
The last 2 weeks have been utterly exhausting, as we expected. Fetroja has a brutal infusion schedule, especially when you factor in the lack of a pump and the need to change the bag halfway through the 3 hour infusion. Adding a malfunctioning midline to the mix really seems pretty unnecessary! But despite everything, I somehow managed to cook a ridiculous amount of delicious food for Thanksgiving, AND I was able to slightly adjust my infusion schedule so that we could join my mom and Frank for Thanksgiving dinner. We’re trying our best to squeeze some good times around the current medical intensity. And as difficult as this whole situation is, we’re still so grateful that it’s NOT cancer, and that makes things slightly more bearable.
 
I did talk to my team about my concern that IV antibiotics alone won’t be enough, as we’ve already treated abscesses previously with IV antibiotics AND surgery only for them to return. It sounds like the long-term plan is bacteriophage therapy, but that takes time to set up, so we’re hoping the IV antibiotics will be enough to buy some time while we work on that. I’m 99.9% sure that this round of treatment will not be the end of Nodsferatu, but I can put up with a temporary solution as long as we’re working on something else for the long run. I fully expect to be battling these pseudomonas abscesses for quite some time, but I am hopeful that eventually we WILL find the right treatment combo to finally kick them to the curb!