It's done

Brief update: 

I'm really hurting. They did remove bone, but they also found and removed the suture, so I'm super happy about that. I'm mostly taking pain meds and sleeping right now.

Full update to follow when I'm more functional.

Almost there

Surgery hasn't happened yet, but I should be going back any minute now! I am hangry and more than ready to be knocked unconscious already. Prayers and positive vibes are appreciated!

Here we go!

Surgery day is finally here!
 
They told me to arrive at 11am, but I’m sure they’ll already be behind schedule by then, so I don’t know what time surgery will actually happen. I had to stop eating at midnight, so here’s hoping I won’t have TOO long to get hangry. My bag is all packed and I’m definitely ready to get this show on the road.
 
I’m also definitely anxious. Though it obviously doesn’t compare to a freaking double lung transplant, this is still the most invasive procedure I’ve had since then. Aside from the risk of general surgical complications, I have some issues specific to this surgery that I’m stressing over. One is the question of whether or not they’ll be able to find and remove the leftover suture that we assume is hiding in there and harboring these infections. If I wake up from surgery to hear that no suture was removed, I will be VERY upset, because we’re all fairly certain that this cycle of infection will continue as long as it’s in there. My other big worry is whether or not the infection is in my bone. If it is, they’ll have to remove a piece of my rib, and my surgeon let me know that due to the location afterwards my shoulder blade could briefly get stuck in the gap sometimes. It doesn’t sound like it would be a huge problem, but it does sound uncomfortable, and I’d really rather not deal with it.
 
My last big worry is wondering how painful the recovery is going to be. It’s going to be a decent sized incision, and they have to pull my ribs apart and get all the way into my chest cavity. I had a lot of pain after the biopsy, and during that they just stuck a big needle in it, so I imagine this will be worse. I’ll also have large chest tubes immediately afterwards, and while I don’t really remember what it was like having them after transplant, I do know I was very relieved to get them out. The whole thing just sounds incredibly unpleasant, and I’m honestly kind of dreading it.
 
I am VERY glad that I had a week off the antibiotics before diving into this. I don’t know that I got much more sleep because my sleep schedule is pretty much a raging dumpster fire, but not being tethered to an IV pole 9+ hours a day definitely reduced my stress level. I feel a little more mentally prepared to cope with recovering from surgery and doing several more weeks of IV antibiotics now.
 
I have no clue what recovery is going to look like, so if I’m still not up for typing anything by Friday, Katherine will post an update. I will gratefully accept all prayers and positive vibes, with a specific focus on them finding and removing the suture and not needing to remove bone. My full Hebrew name is Keren Eliana bas Sarah. Thank you!

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!