One week of freedom!

It’s only temporary, but for one glorious week I am FREE!
 
Last week, after 8 straight weeks of IV antibiotics, I finally reached my limit. I had noticed some pain and swelling under my armpit on my left side, which we assumed was a swollen lymph node due to the infection. At first the pain was mild, but then for a few days it became more significant and started interfering with my already limited and disrupted sleep. Between not sleeping decently for 8 weeks and then waking up in pain, I was DONE. I reached out to my transplant team and told them that I desperately needed a break before surgery, since I’m expected to do up to 6 more weeks of IV antibiotics afterwards. I’m usually a pretty diligent and compliant patient, but I let them know that a break was not negotiable, and either they told me how many days to take off, or I would start skipping doses so I could get some sleep. They convinced me to hang on for a few more days until we could get sputum culture results to make sure that the nasty, multi-resistant strain of pseudomonas in the abscess had not gotten into my lungs. By then the pain had subsided to a manageable level, so I was willing to wait just a little longer.
 
We got the results yesterday, and not only was there no multi-resistant nastiness, there was NO pseudomonas whatsoever! I know it will come back since my sinuses remain infected and will drip pseudomonas back into my lungs once I’m off antibiotics, but it was still a great result for now. And that means for the first time in 9 weeks I am FREE from the horrible infusion schedule! I still have my PICC line, but I don’t need to run any antibiotics through it for a full week. Which means I won’t be chained to an IV pole for 9 hours a day, and we can FINALLY get a full night’s sleep! Katherine and I are so excited!
 
I also had a regularly scheduled follow up appointment at transplant clinic yesterday, and my lung function was an amazing 101%! Even though this abscess situation has been pretty terrible, it’s nice to see that at least my lungs are still doing great! Overall we’re all just waiting for surgery now, as the abscess is the only pressing issue. They’re also going to do a bronchoscopy while I’m under just to make sure everything is ok in there after randomly coughing up a blood clot a few weeks ago. At this point a bronch is really the least of my worries, and since I’ll be unconscious anyway, what do I care?
 
On Tuesday I will resume IV antibiotics for a couple days to get me ready for surgery, which is scheduled for Thursday the 29^th. Though I’m very much not looking forward to a likely painful recovery process, I AM glad to finally get surgery over with. It has been a LONG ROAD. This all started with a wonky routine x-ray at the end of September, followed by an even more concerning CT scan mid-October, and then a month of thinking I had cancer and a failed biopsy before finally realizing it’s actually an abscess in November. Then I started IV antibiotics, which I have now been on for nine full weeks. I am TIRED, and I still have a long way to go, as I will need additional weeks of IV antibiotics after surgery. Both Katherine and I are EXHAUSTED!! But I’m starting to see the faintest glimmer of light at the end of this very long, dark tunnel, and am hopeful that sooner than later the current round of medical issues will finally be DONE. And I’m sure everything will be much easier to deal with once I get some sleep!

At last, a plan!

I haven’t written anything over the last couple weeks, because unfortunately there wasn’t anything to write about. The decision to move forward with surgery was made literally the last day before my surgeon went on vacation for 2 weeks. I pretty much spent the last 2 weeks twiddling my thumbs waiting for him to come back so we can finally DO SOMETHING. I already know from unfortunate experience that this is the ABSOLUTE WORST time of year to have any sort of medical issue, but this seems a bit excessive. I’m strongly considering just skipping December entirely going forward. This is NOT my time of year.
 
Of course, while waiting I’ve still been on IV antibiotics, because at the very least they’re preventing things from getting worse. But we’ve also been on pins and needles, because I have a habit of not waiting for outpatient appointments and ending up in the ER instead. We thought the time had come Friday night when I suddenly coughed up a blood clot. Pre-transplant I coughed up far greater amounts of blood on a fairly regular basis, and one little clot would have been nothing, but aside from when I’m recovering from bronchoscopies I haven’t coughed up blood a single time since transplant. I had no clue how significant one random clot was, and our stress level was not helped by the fact that for some reason it took over an hour and a half to get the after-hours transplant doctor on the phone. Thankfully, she said that as long as I didn’t cough up anything more significant, I did NOT have to go to the ER and we could just continue to monitor the situation. Whew!
 
Which brings us to yesterday, and my long-awaited consult with the thoracic surgeon.
 
Surgery is officially a go. It’s currently scheduled for the 29th, with a slim chance of possibly getting me onto the schedule next week. Finally getting this show on the road is definitely good news. The surgeon is also confident that during the procedure he will be able to find and remove the suture that we assume is in there harboring these infections, so that’s more good news.
 
The not good news is that the surgery sounds intense. He’s expecting a 3-4" incision, and they have to pull my ribs apart to get into my chest cavity. I will likely be hospitalized for at least 2-5 days afterwards and will have large chest tubes draining fluid from my chest just like I did after transplant. Once those are gone I will probably go home with a smaller device called a JP drain that will continue draining the fluids for the next few weeks. On the plus side, he does NOT think I’ll need a wound vac this time. Risks include potentially spilling the currently contained infection into my chest cavity, and possibly causing injury to my lung if the abscess is really stuck to it.
 
The even more upsetting news is that he expects me to be on IV antibiotics for 6 more weeks after surgery, on top of the weeks I've already done. I just finished 7 weeks and am moving into week number 8, and it might be 3 more weeks until I even get to the surgery. I am SO OVER these IV antibiotics!
 
And the potentially worst news is that if they find any infection in my bones, they may have to remove a small piece of my rib. The piece in question is right next to my scapula (aka shoulder blade), and apparently if you leave a gap there the scapula can kind of fall into it. Normally they put some sort of mesh in to prevent that from happening, but in my case they can't do that because I have a nasty infection in there, and infections love to attach themselves to things like that. We’re pretty sure a leftover transplant suture that didn’t dissolve is the source of my current infection, and the last thing we want to do is give it a new home. So if they remove bone I may have my scapula randomly falling into the gap for the rest of my life. Supposedly you can fix it easily by changing position, but it sounds like it hurts. So that's not great. Buuut they may not find any bone infection, in which case they can leave my ribs alone. Here's hoping!
 
So it’s still NOT cancer, and it’s NOT a double lung transplant, but it is A LOT to deal with on top of everything I’ve already been dealing with. Katherine and I are utterly exhausted, and I’m REALLY not looking forward to yet another painful surgery and lengthy recovery. But I’m also relieved to finally be moving forward towards a solution. And hopefully, someday, eventually I will FINALLY see the end of the current long round of medical drama!

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!

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!

Maybe not cancer??

This week brings yet another unexpected twist, but this time hopefully it’s a good one!
 
The thoracic surgeon looked through all my imaging going back YEARS, and discovered that Nodsferatu has actually been there since at least 2021! Back then it was WAY too small to notice, but once you know what to look for you can see a tiny bump on the scans. But the really exciting part is that he looked at the chest MRI taken when I had an abscess back in December, and he thought that Nodsferatu looked like a fluid collection and NOT a tumor! If that’s true, that would mean that Nodsferatu is likely just yet another Pseudomonas abscess, and NOT cancer! In which case instead of putting me through a rigorous surgery and opening my chest to remove it, he MIGHT be able to just drain it and treat the infection with IV antibiotics, which would be MUCH less invasive!
 
This was a very exciting development, but it definitely required more imaging before coming to any conclusions. He ordered a chest MRI, and remarkably I was able to get it done that very same day. And if I’m reading this MRI report correctly, Nodsferatu looks like an abscess!!!
 
Meanwhile my transplant team was already working on getting me setup with home infusion to treat the Pseudomonas infection that showed up in the biopsy. Yesterday I had a midline placed, and today I started IV antibiotics. Unfortunately the antibiotic of choice is Fetroja (aka cefiderocol), which requires 3 hour infusions 3 times a day. To make matters worse, each dose is split into 2 bags, so it has to be changed halfway through. It’s far from our first rodeo with this particular antibiotic, so Katherine and I already know we won’t be getting much sleep for the next few weeks. And abscess treatment usually isn’t a quick process, since there isn’t any blood flow inside an abscess and it takes a while for the antibiotic to penetrate it. We’re not exactly looking forward to getting back on the no-sleep train.
 
HOWEVER, I think I mentioned in a previous update that our bar has been lowered DRAMATICALLY since this whole nodule saga began. A month ago if you had told me that I have YET ANOTHER Pseudomonas abscess that needs to be treated, I probably would have lost my damn mind. But NOW, I will be THRILLED to be told that I only have an abscess and not freaking cancer! It’s amazing how quickly your perspective can change!
 
Even though it’s the much better option by far, Pseudomonas is still one stubborn bastard and is ABSOLUTELY my arch nemesis. So to recognize this, Katherine somehow managed to find the absolute best plushy in existence! Apparently the site that provided the cancer plushy also had another incredibly topical item in their shop. I was SO surprised and laughed SO HARD when she gave it to me! And now whenever Pseudomonas ticks me off, I can just punch it in the face!

Biopsy fail

Well, the biopsy… happened. And that’s pretty much all there is to say about that.
 
The biopsy samples came back showing… nothing. And according to the PET scan there is definitely Something, so we think they missed the target when collecting the samples. Which is incredibly unhelpful.
 
In a weird turn of events, I still don’t have answers, but I DO have the beginnings of a plan. I spoke to my transplant doctor yesterday, and she said instead of trying another biopsy, she’d rather just take the whole thing out and figure out what it is afterwards. I definitely prefer this option, because the biopsy ended up being more painful than I expected. The procedure itself was fine because I was high as a kite on Versed and fentanyl, which was the one enjoyable part of this whole experience. Once the anesthesia wore off, however, I was in quite a bit of pain. I was also anxious, because there is a significant risk for pneumothorax (aka a collapsed lung) after a lung biopsy, and I wasn’t sure how I was supposed to tell the difference between normal chest pain and pneumothorax chest pain. Fortunately I didn’t have any symptoms other than pain, and that has been getting better as the days go on, though some is still lingering. They also put the biopsy needle in through my back by my left shoulder blade, which happens to be almost the exact spot where I’ve been having pain that I’ve been going to PT for over the last couple months, so that was less than fun. If I’m probably going to need surgery anyway, I’d rather cut (ha) to the chase and just get it over with instead of throwing in additional painful procedures. I have a consult with the thoracic surgeon Monday morning, so hopefully they can get me in for surgery just as quickly as they got me an appointment!
 
The one thing that DID show up in the biopsy results was... Pseudomonas. I was simultaneously INFURIATED and relieved at the thought that this whole thing might just be a severe Pseudomonas infection. I believe my initial reaction was something along the lines of “PSEUDO-F@#%ING-MONAS!!!” That damned bacteria is DETERMINED to kill me one of these days! But I also realize that a Pseudomonas infection would be FAR better than cancer. Unfortunately, my transplant doctor thinks it only showed up because my lungs are colonized with Pseudomonas and that it’s not actually the cause of the nodule. We might still treat it with a round of IV antibiotics anyway though.
 
Speaking of The Nodule, Katherine and I decided that it needs a name. I’ve been thinking of it as an alien monster in my chest, which of course brings to mind the chestbursters from the Alien movies, but they don’t really have names and Xenomorph just didn’t feel right. I tried to think of other horror movie monsters, and with the help of the CF Discord server came up with Nodsferatu (a play on Nosferatu), aka The Nodsferatule, or Nods for short. Katherine also decided that I needed a new critter after my biopsy, but she couldn’t just get a regular bronchoscopy animal since this wasn’t a bronchoscopy. So she somehow managed to find a cancer plushy! And even better, you can flip it inside out to turn it into a healthy cell! It was so surprising and definitely made me laugh!
 
So once again I’m waiting. Hopefully not for long, and HOPEFULLY the next procedure will be the LAST one for this particular problem!