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!!!

Unexpected obstacles

OF COURSE there would be a historic blizzard EXACTLY on the day I was supposed to have my follow up appointments! Not only that, but OF COURSE it would be JUST the right consistency for snow sculpting when I’m too incapacitated to do much of anything with it! Let me tell you, I have NOT been a happy camper the last few days!!
 
Today I was supposed to have follow ups both with my surgeon to remove the staples and maybe the JP drain, and with my Infectious Disease doctor to come up with a plan for when I can finally finish the IV antibiotics. By Saturday I was already 90% sure those appointments would be canceled, and I was correct. What I did NOT expect was to receive a voicemail from the surgeon’s office on Saturday saying that they would like to push my appointment off by a WEEK. Anyone reading this who has seen an Eliana temper tantrum might be able to imagine my reaction to that! Fortunately, my amazing surgeon called me himself on Sunday to check in, and said that he would get me in on Wednesday to remove the staples and maaaybe the JP drain. I felt MUCH better after that! Having 39 staples in your torso is NOT comfortable, and I cannot wait to finally get them OUT! My Infectious Disease appointment was also moved to Wednesday, so at least I only lost a couple days from this whole mess.
 
I had been making good progress, both with having less pain and being less dependent on pain medication, and with the drain output decreasing and lightening in color. Unfortunately, both of those were ruined on Sunday night. I had an unexpected, strong, and painful coughing fit, likely due to my ever-terrible sinuses. I was already in pain before the coughing fit due to being slightly overly aggressive in reducing my pain meds, and the coughing fit definitely didn’t help. More concerning, however, is that after the coughing fit the drain output both increased and reverted to a dark red color, indicating active bleeding. Thankfully it wasn’t to a dangerous level, but it almost certainly means that the drain will not be removed this week unless there’s a miraculous change over the next few days. All prayers and positive vibes are gratefully accepted!!
 
Between the increased pain and feeling kind of loopy from pain meds, I wasn’t at my best today. I had originally thought I might be able to manage some sort of snow sculpture on the hood of my car, since I wouldn’t have to bend down for that. After the coughing fit, however, that much exertion was definitely off the table. I still wanted to at least walk outside briefly and experience the aftermath of the blizzard though, so shortly before I was due for my afternoon antibiotic I pulled myself together, got dressed, and left the apartment for the first time in days. Katherine and I walked out into the snow in front of the building, and as I was enjoying the crisp fresh air on my face, I realized there was a bush with a pile of snow on top right in arm’s reach. I wasn’t up for one of my usual full scale snow sculptures, but I thought I might be able to manage just a little something. It’s definitely not up to my regular standards, but considering the circumstances I’m quite pleased with my little nesting bird! We put him in one of the planters right by the entrance to our building where lots of people could see him. Getting outside briefly and making even a small snow sculpture definitely lifted my spirits.
 
The other disappointment for this week is that Katherine and I had tickets to see not one, but 2 shows that we were really looking forward to. We were supposed to see Blue Man Group in Philly on Tuesday evening, and Riverdance in Atlantic City on Saturday night. We bought the tickets months ago, well before we had any idea of how medically involved my life was about to become. After everything we’ve been through these last few months, we certainly could have used a night out!! Unfortunately I’m just not well enough to manage it right now, which seems to be a theme for me this week. Hopefully things will settle down and we can get back to having fun outings SOON!

Battered but not broken

It is DEFINITELY good to be home. I don’t think I slept more than 2 or 3 consecutive hours the whole time I was in the hospital. It is so nice not to constantly wake up to beeping machines or a parade of medical professionals coming in to poke and prod and talk to me. Of course, I don’t think I’ve gotten more than 5 consecutive hours of sleep since I’ve been home thanks to my antibiotic schedule, but somehow it feels better than what I got in the hospital.
 
I still have the JP drain, which might stay in until my follow up appointment in 2 weeks. It’s not super comfortable, but it’s definitely not as bad as the chest tubes. Katherine and I recently took stock of all my new battle wounds. I have one nearly 5” long incision, 3 smaller incisions where they put in cameras during surgery, and 2 small incisions where the chest tubes were. We also counted my staples: 24 in the big incision, 7 in small incision #1, 5 in small incision #2, and 3 in small incision #3. That’s a total of 39 staples, and they are NOT comfortable. Some of them are on my back, so there’s really no way to avoid laying on them unless I’m standing or sitting upright, so they’re constantly being irritated. Unfortunately they probably won’t come out before my follow up appointment.
 
I’m still very sore, and sometimes a whole lot more than just sore. I have some pain medications that I take regularly every 8 hours, and also some as-needed oxycodone, but right now I need to take that pretty regularly too or the pain gets out of control. Stupidly, I had to fight a bit to get them to send me home with a halfway decent amount of oxycodone. In the hospital I was taking 10-15mg every 4 hours, and even with that sometimes I needed Dilaudid for breakthrough pain. I asked to have my home meds be in 5mg tabs so I could modify the dose as needed and gradually bring it down, but somehow they decided that 20 tabs would be enough. The doctor said I shouldn’t still need that much this far out from surgery and that they don’t typically send people home with higher doses. I pointed out that they knew I was working towards discharge, so why hadn’t they started bringing the dose down days earlier? He did agree that was a mistake on their part. In the end they gave me 45 tabs, and I’ve been working on taking lower doses less frequently. Which resulted in some painful hours Sunday morning when I tried to be tough and only take 5mg after not taking anything for over 8 hours. I told Katherine I felt oxy-shamed by the doctor, and thankfully she helped me see sense and take what I need to be semi-functional. The whole thing is dumb and confusing. In the hospital they really pushed pain management and emphasized how important it is for me to be able to take deep breaths and cough to prevent pneumonia and other complications, but then suddenly when I’m going home all that goes out the window and I “shouldn’t need that much.” Hopefully what I have will be enough, but I did recently connect with a Palliative Care doctor, and before surgery she reassured me that she will help with pain management if needed.
 
Katherine and I are also back on the IV antibiotic train, which means running 3 hour infusions 3 times a day. That will definitely last at least 2 more weeks until my follow up appointments, and possibly significantly longer than that. We’re both basically shuffling around like zombies just trying to get through each day. The tricky part is that even though the mesh they put in is much lower risk for harboring infection than the suture was, there is still some risk, so ideally they would like to continue the antibiotics until the mesh has fully dissolved. Unfortunately the mesh doesn’t show up on imaging, so I guess we’re just kinda deciding when to stop based on vibes or something? Which means they’re more likely to err on the side of caution and go for a longer course than a shorter one. We’ll see what my Infectious Disease doctor has to say at my follow up appointment.
 
On a more fun note, I did finally manage to make a couple Pole People a few days before being discharged. I was on a different unit this time, so I had a new audience who really loved them. These Pole People even got to have an exciting adventure! My antibiotic was running when it was time for my bronch, so the IV pole came with me down to the OR, Pole People and all! I also have a BUNCH of great new stuffed animals thanks to Katherine! The cat and the otter are new additions to the Bronchoscopy Collection, since I had 2 bronchs while I was inpatient, and the big fluffy Squishmallow is for the surgery! Someday we might end up needing a room just for all my medical plushies!
 
So that’s where things stand so far on the current medical journey. It’s still too early to see a light at the end of the tunnel, but I think surgery might have been the peak of this mountain, and hopefully now we’re finally on our way down. I’m battered and bruised, and Katherine and I are both utterly exhausted, but we’re slowly making our way to the finish line. We’ll get there eventually!

Progress!

A lot has happened over the last 2 days!
 
One thing I didn’t mention is that along with pseudomonas, they unexpectedly found a fungus in one of the surgical samples from my lungs. Due to this the transplant team ordered a CT scan to check for any signs of fungal infection. It wasn’t an urgent order, but for some reason they put me on the schedule for 11pm that night. I was surprised, but not super bothered, until I found myself struggling to stay awake at midnight with no sign of being taken down for a scan. I gave up and went to sleep… only to be woken at 1:30am and brought down to CT. Then when I got there, 4 people were ahead of me, so I didn’t end up getting back to my room until 2:30am. Yay hospital schedule!
 
I followed up that sleepless night with a painkiller snafu in the morning, and ended up really suffering for a few hours before finally getting what I needed. It then took several hours to get the pain fully back under control, and I was incredibly drained by the whole experience. Overall I wasn’t living my best life on Wednesday.
 
The labwork on the fungus had the transplant team a bit perplexed. They were able to see that it was a mold growth, but couldn’t identify exactly which species. The CT scan was also unclear, as there were some findings (ground glass opacities and a 6mm nodule for my medically minded friends) that could indicate a fungal infection, but could also be caused by multiple far less serious things. They started me on an anti-fungal right away just in case, but they also need more information. The bronchoscopy that was done during surgery only focused on and took samples from my left lung, since that was the trouble spot at the time, so now I need another bronchoscopy to see what’s going on in the right lung. Never a dull moment around here!
 
In more positive news, they finally removed the second large drain tube today! That was a BIG relief and I’m definitely more comfortable without it, as well as much more mobile now that I don’t need to lug a drainage collection box around everywhere I go. I’ve also gotten stronger and steadier on my feet in general over the last couple days, and now that I don’t need a place to hang the drain box, I was finally able to ditch the walker! I’m still very deconditioned and my heart rate jumps with the slightest exertion, but being more mobile and independent is a big relief. The one drain left is a much smaller tube and bulb called a JP drain, and my surgeon thinks we might be able to pull that one soon too and I’ll be fully drain free. If necessary I can go home with that drain still in me though.
 
Once the last big tube was removed, I was very happy to finally ditch my hospital gown and put on some comfy pajamas. For the most part I absolutely refuse to wear hospital gowns outside of procedures, so if you see me in one for more than a few hours you know it’s not a good situation. In this case the tubes were too difficult to manage in regular clothing, so I was stuck wearing hospital gowns for over a week. It was so nice to put on a pair of pajamas and start feeling more like a human being!

The plan for tomorrow is to get the bronch done. We don’t have a scheduled time because I’m an add on, so they’re pretty much squeezing me in whenever they can. I can’t have anything to eat or drink after midnight, but that shouldn’t be an issue because honestly my appetite has been almost non-existent since surgery anyway. The other big thing keeping me in the hospital right now is that we still haven’t gotten insurance approval for my current antifungal medicine. If they deny it, I’ll have to stay here until we can find one that they will approve to send me home on. And once they’re finally ready to discharge me, we need to make sure my home infusion company can get my antibiotic delivered the same day so there won’t be any gap in my treatment. Considering Shabbos starts shortly after 5pm, I am extremely doubtful that they’ll manage to pull everything together to get me discharged before then. But it DOES sound like hopefully, G-d willing, I should get to go home sometime this weekend. Here’s hoping!!

Me with my tubes and drain boxes

 

Each tube had its own box to drain into

Taking the boxes for a walk

The part she's holding was INSIDE me!

Pajamas!

Slowly recovering

Sorry for leaving everyone hanging! The last several days have been ROUGH. I keep planning to write an update, but I’m having trouble staying awake long enough to manage it! Typing clearly is also a bit more difficult than usual these days. But I’m gonna try!
 
Thank G-d overall the surgery went well! It took longer than expected, which of course was stressful for Katherine and my mom, but I think it went smoothly. The excellent news is, they found and removed a retained suture! That has very likely been home base for these pseudomonas infections for YEARS, so having it gone should be a game changer! I was SO HAPPY and relieved to hear that when I woke up!! Unfortunately, they did have to remove small pieces from 3 ribs and a small piece of lung as well due to infection. They’re still waiting for test results on the bone, but they had to be removed both because the infection had tunneled through them and because that was the only way to get to the abscess. The puss in the abscess and the sputum samples from my lungs did show pseudomonas, as expected.
 
One surprise is that they ended up putting some mesh in where they removed the bones. I was concerned about this, but they explained that this is dissolvable mesh, and that the structure of mesh is very different from sutures and doesn’t allow infections to get stuck the same way. My body had noticed the suture and formed a granuloma around it to wall it off, but what that actually ended up doing was walling the infection IN and preventing antibiotics from eradicating it. Apparently the body is less likely to notice mesh, and is also less able to wall it off due to the size and shape. So hopefully this mesh should provide some temporary protection in the gap where my ribs were, and then disappear before it can cause any problems.
 
Recovery has not exactly been a party. I came out of surgery with 1 large incision and 3 small incisions, all stapled shut, plus 2 large drain tubes and 1 JP drain (which I guess is 3 more incisions!). I’ve been getting IV antibiotics 9 hours a day, plus other random infusions such as Magnesium and Potassium when they don’t like the look of my daily bloodwork. I’m also not fully steady on my feet and am using a walker to get around. Figuring out pain control has been tricky. It’s really important to manage my pain, as I need to do deep breathing exercises and cough to clear out everything from the lavage (lung wash) I got during the bronchoscopy. For the first few days deep breaths and coughing were almost impossible due to the pain, but thankfully I can mostly manage it now. The problem is that most painkillers can suppress breathing, and they also make me extremely sleepy, and I’m not exactly doing deep breathing while I’m asleep. So we’re trying to find the balance between controlling my pain without knocking me out, and haven’t quite gotten there yet. My med cocktail also makes me have dreams bordering on hallucinations almost every time I close my eyes, and most of the time they’re reality based, so I keep getting confused about what conversations and experiences have actually happened versus which ones are all in my head. Not gonna lie, it’s been a difficult time!
 
But! I’m getting steadier on my feet and more able to walk day by day. One of the big tubes was removed yesterday, and we’re very hopeful that the other one can be removed tomorrow. My lungs are recovering well and I’m almost fully off supplemental oxygen. I’m getting there!
 
The goals for discharge are to get my pain under control, to get the last big drain tube removed, and to get me off supplemental oxygen (which I’ve almost accomplished). We also need to make sure my bowels finish waking up, since I really don’t need to end up back here with a bowel blockage like I did after transplant. My appetite being pretty much gone since surgery isn’t helping with that, but I’m trying to force myself to eat some solid food and get things moving. I’m still hopeful that I might manage to accomplish all that before the weekend and get home for Shabbos. Prayers and positive vibes are greatly appreciated!!

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!

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!