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!

I don't have cancer!!!

It’s official: I DON’T have cancer!!! My transplant doctor told me Friday afternoon that cancer is now off the table, and Nodsferatu is an abscess! Which is still problematic and needs to be dealt with, but is WAY better than cancer!!!
 
Right now they don’t want to go in and remove it surgically, because they’re afraid of popping it and spreading the infection. The current plan is to drain it and slam it with a long course of IV antibiotics. I assume that I may have a drain in place for some time after the procedure to make sure it empties completely, but that wasn’t actually discussed yet. The procedure also hasn’t been scheduled, but that’s to be expected since they only settled on this plan Friday afternoon. Hopefully I’ll hear from someone early in the week to schedule a date.
 
Right after talking to my transplant doctor I had an appointment with my infectious disease doctor, who helps my various teams figure out the best way to treat my complex, multi-resistant Pseudomonas monster. I talked to her about some of my concerns, such as the fact that we’ve treated my Pseudomonas abscesses with drainage, debridement, and antibiotics before, and they still came back. She agreed that this is a valid concern, and said she is going to explore bacteriophage treatment again in the hopes that it could provide a more permanent solution. She also agreed that it is likely that I have a leftover suture on the left side just like I did on the right side. While we won’t open me up just to look for a suture, if we do end up getting to the point of a surgical intervention, finding and removing that suture will definitely be a priority since it is likely the source of these recurrent infections. She also said that even after this is resolved, we will do maintenance imaging (probably CT scans) on a regular basis to monitor for potential problems and avoid getting caught by surprise again.
 
I also asked about something on the MRI report which seemed to indicate that the infection has created a tract through one of my ribs. During our brief phone call my transplant doctor said that the thoracic surgeon did not see any bone infection, which seemed to be at odds with the MRI report. My infectious disease doctor was also confused about this, and plans to follow up with the radiologist as well as the other doctors involved to confirm whether or not there is bone involvement. Bone infections are even harder to treat than abscesses, and require an even longer course of IV antibiotics. Right now the plan is 4 weeks of IV antibiotics, but if there is bone involvement that will be extended to 6 weeks. Either way I’m in for a long haul, but I already knew that.
 
One other minor issue is that this course of IV antibiotics was planned before we knew that Nodsferatu is an abscess, and was only meant to last 2 weeks to treat the infection that showed up during the biopsy. Due to this they gave me a midline instead of a PICC line. The problem with that is midlines are only meant for short term use, not the 4-6 weeks required for an abscess or bone infection. Right now the plan is to try to use it for as long as it lasts, but I might have to get it replaced with a PICC line later on.
 
It's only day 5 of this round of IV antibiotics, and Katherine and I are already utterly exhausted. Katherine is beyond wonderful and is helping me by running my morning dose so I can get some sleep after staying up past 3am with the late night dose. So I’m staying up late, she’s waking up early, and we’re both napping randomly throughout the day. We pretty much hate this antibiotic because of its grueling schedule, but the only other option is Tobramycin. When the choice is between severe tinnitus and exhaustion, we’ll take exhaustion every time. And at the end of the day we are SO relieved and grateful that I don’t have cancer that it ALMOST makes this process look easy!

The plan of attack

We’re finally getting somewhere!
 
There was some confusion and communication mix-ups trying to coordinate between 2 surgeons, but in the end I’m scheduled for surgery with just my transplant surgeon tomorrow morning. He thinks that there’s a suture from transplant in my chest that has been harboring infection and allowing it to resurface, so he’s going to clean out the infected tissue and try to find and remove the suture. The last time I had these abscesses they also looked for a suture but couldn’t find it, so he plans to go deeper this time. Though I’ll be getting general anesthesia, he expects it to be a quick and easy surgery. And at least this time I’m only getting one side opened up, unlike last time when they had to open up both sides. Hopefully recovery will be a little easier this time.
 
One somewhat alarming thing is that on the MRI they saw a little bit of something starting on the other side too. They didn’t see enough to merit going in surgically, however. The current hope is that if an infection has also begun on the other side, the antibiotics I’ll be receiving will be enough to take care of it. The bad news is that susceptibility testing shows that my current infection is a multi-resistant monster like I had last time, so there aren’t many antibiotic options available. So far they have identified one antibiotic, which I started taking tonight. But they really want me on 2 antibiotics simultaneously, so they’re doing extended susceptibility testing in the hopes of finding other options. Right now the only other option available is Tobramycin, which I refuse to take. Tobramycin has already given me permanent (but thankfully mild) tinnitus, and the last time I attempted to take IV Tobramycin the ringing got louder within just a few days. It’s pretty clear that if I did a full 2 week course of IV Tobramycin, the ringing would become unbearable. Hopefully the extended testing will find at least one more antibiotic that I can use without terrible side effects.
 
We do still have another trick up our sleeve though. My transplant doctor has already been in touch with the bacteriophage (aka phage) therapy program at Yale. This is an experimental treatment that is not widely available in the United States. Fortunately for me, Yale has a phage therapy program specifically for CF patients with pseudomonas. Bacteriophages are a type of virus that attack bacteria without causing harm to humans. The catch is that each bacteriophage will only attack a specific bacteria, so they must be grown tailor made to the infection you’re trying to treat, which takes months. The current plan is to treat my infection immediately with surgery and antibiotics, submit a sample to Yale to develop phages for me, and then hit the infection again with phage therapy in a few months to hopefully eradicate it once and for all.
 
Right now my focus is on getting and recovering from surgery, and the impending course of antibiotics. It looks like I’ll be in the hospital through the weekend, and they’re tentatively talking about discharging me next week. It’s not fun being stuck in the hospital, and I’m definitely not looking forward to going through multiple rounds of treatment, but I’m grateful that I at least have some options available. Hopefully surgery will go smoothly and the recovery will be quick, and they’ll find one more great antibiotic for me soon!

A plan at last!

We finally have a plan! It isn’t a particularly fun plan, but it is a plan nonetheless.

I had a follow up with my transplant doctor on Tuesday. We confirmed that Lump and Lump Jr. are now smaller after Lump popped, drained, and never grew back. We also confirmed that Other Lump has gotten bigger, which was obvious as it has been red and swollen for at least a week. And so, we finally came up with a treatment plan: surgery to drain Other Lump, followed by a 2 week course of IV amikacin. Unfortunately that requires being admitted for a few days while they stabilize the dosage before sending me home to finish up.

But what about the bacteriophages?? Well, we’re still waiting for Yale to turn them into a clinical grade product for me. If they’re ready before I finish the amikacin, I’ll probably start them immediately. If they’re ready afterwards, and the amikacin takes care of the infection, then we’ll save them for the next infection (because we all know I ALWAYS bring the drama). At this point I’m honestly kind of hoping they aren’t ready, because since they’re a weird experimental treatment they have to be given in the hospital, and I’m really not in the mood for a 2 week stay at Hotel HUP. So I’m just gonna hope that amikacin does the trick without damaging my hearing.

Of course, just as we came up with a plan, Other Lump decided it wasn’t getting enough attention. Barely a day after my appointment it burst dramatically and released an absolutely appalling amount of pus. It was basically my own private episode of Dr. Pimple Popper, and since I refuse to watch that show I didn’t exactly enjoy the experience. It then proceeded to continue draining for the next 16 hours or so, which I also didn’t enjoy. On the plus side, Other Lump looks and feels much better now! But my doctor still wants me to get it cleaned out, so I’m scheduled for surgery on Monday.

The plan for today is to admit me and get me started on IV amikacin. We’re hoping to pull off a direct admission this time instead of putting me through yet another ER visit. I’ll also get to experience the fancy new hospital building since this time I’ll be assigned to a surgical team and all the ORs are in the new building. If I have to be stuck at HUP, at least I get to do it in style! So I’ll be spending the rest of my weekend sitting around waiting for someone to call and either tell me that a bed is ready, or that I need to go to the ER and get admitted from there, and then settling into the hospital. Do I know how to party or what?

As not-fun as all this is, I am DEFINITELY looking forward to eventually being DONE with this round of drama. This stupid lump saga has dragged on for way too long, and I am extremely ready to move on with my life!

The hits keep coming

Can I return 2022? Mine is already broken.
 
Last week we were waiting for the results from susceptibility testing, desperately hoping to find an antibiotic with a less grueling infusion schedule. Instead, we found out that the previous 2 and a half weeks of sheer exhaustion were a complete waste, because MY INFECTION IS RESISTANT TO THE ANTIBIOTIC WE WERE USING. Not gonna lie, that was pretty crushing news, both because Katherine and I went through so much for no benefit whatsoever, but also because the only antibiotics left have bad side effects. Specifically, I have 2 antibiotics to choose from: tobramycin, which has already given me permanent (thankfully mild) tinnitus, and amikacin, which has already given me (also thankfully mild) hearing loss. The last time I tried tobramycin the tinnitus started getting louder in less than a week, so I decided to gamble on amikacin being slower to cause damage. Plus, hearing aids are a thing if necessary, whereas there is nothing you can do for tinnitus. What a garbage choice to have to make!
 
I have not yet started the new antibiotic schedule, because first they want to drain the abscesses so the antibiotics can penetrate more quickly. But they DON’T want to do full surgery, because my anti-rejection meds impede healing, so surgery could actually end up spreading the currently-contained infection without having a good arsenal of antibiotics available to treat it. Right now we’re waiting for the abscesses to get a bit bigger so they can go in and drain them with a needle, and THEN we’ll get me back on IV antibiotics.
 
We’re also exploring an experimental treatment called bacteriophage therapy. Bacteriophages are viruses that don’t cause infection in humans, but do infect and destroy bacteria. The catch is that each bacteriophage only targets a specific bacteria, so you need to cultivate exactly the right phage to treat an infection. There has been a fair bit of research on using bacteriophages to treat multi-resistant pseudomonas infections specifically, which is good news for me. So my pseudomonas sample was shipped off to Yale, and they were very impressed with how extremely nasty it is. Apparently it takes 4-6 weeks to get phage therapy approved and set up, so it’s a waiting game to see if I still need it by then or if the drainage and antibiotics take care of everything. At least I can say that I’ve gone to Yale and they were very impressed with me!
 
And because when it rains, it pours, we have even more on our plate. Unfortunately, after struggling for months, Katherine’s mother was sent home on hospice over the weekend. Katherine has been driving over an hour every day to be there, and will likely be visiting multiple times a week until she passes. To complicate things further, there was a potential Covid exposure in the home, so my doctor has recommended that I not go and that Katherine and I maintain social distance and wear masks to keep me safe. Hopefully we’ll be able to ease up on some of those restrictions soon, but for now the situation has been very difficult.
 
I really don’t have any good news to share right now unfortunately. I hope everyone else’s new year is going better than mine!