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!

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!

Not the best

Well, it wasn’t the WORST doctor’s appointment, but it also wasn’t the best.
 
Last week I saw the plastic surgeon who is in charge of my wound. Though the wound looks like it’s closing well on the outside, there’s still an open pocket under the surface that hasn’t closed. The plastic surgeon said it’s currently unclear whether or not that pocket will close on its own. It’s possible that my body has formed a sort of film inside the cavity that will prevent it from closing entirely. We’re giving it 3 more weeks, and if it hasn’t made significant progress by then, it will have to be closed surgically. Unfortunately that would mean putting me under general anesthesia, re-opening the outer incision, excising the film from inside the cavity, and putting in a drain before sewing everything back up. I’m REALLY hoping things look much better in 3 weeks, because I do NOT want to have to go through surgery and a lengthy healing process all over again. There’s no way to tell what will happen though, so all I can do now is wait and see.
 
I was pretty unhappy after that appointment. I had no idea this was coming, since everything looks like it’s healing great from the outside. I feel like the last 2 months have just been one medical issue after the next, with no end in sight. And I’m REALLY upset at the thought of having to go through ANOTHER painful surgery and recovery. I’m trying to be hopeful that maybe things will improve over the next few weeks, but it’s hard when it feels like every time things start looking up I end up getting punched back down again.
 
2024 ended really poorly, and so far 2025 hasn’t been going much better. Honestly, just typing all this out kinda makes me want to scream! Let’s hope things turn around soon so I can finally move on from this round of medical shenanigans.

Keeping busy

It’s so good to be home!
 
What a relief to be out of the hospital! I am GREATLY appreciating my comfy bed, and having access to a kitchen full of food whenever I want, and finally getting some peace and QUIET away from all the noises and interruptions and poking and prodding of the hospital! And, of course, getting to be with my amazing partner, who deals with so much and takes such wonderful care of me! Home is good!
 
That doesn’t exactly mean I’m living my best life here. I still have the wound vac, which is uncomfortable at best and sometimes pretty painful, particularly during dressing changes. My skin can be sensitive to adhesives, and less than 24 hours after the wound vac was put on I actually got a welt from the first dressing they used. The welt is slowly healing, and we’re using a different dressing now that I’m less sensitive to, but my skin still isn’t loving it and I’m often itchy.  Then there’s the dressing changes, during which they remove and replace the sponge packing the wound. This happens at least 3 times a week, and is painful every time. Most of the time I can get by without taking anything stronger than Tylenol, but for dressing changes I take a small dose of oxycodone to make things more comfortable. There’s still no word on how long I’ll have the wound vac, but it will be for at least another week, which is when I have an appointment with the plastic surgeon to assess my progress and see if they’re ready to stitch me up. So far everyone has said that the wound is healing nicely, so I’m hopeful that I won’t need the wound vac much longer!
 
Aside from all that, I’m also on a pretty rigorous infusion schedule. I run my IV antibiotics 3 times a day at 6am, 2pm, and 10pm, and each infusion runs for about 3 hours. To make it more complicated, for some reason the pharmacy isn’t able to fit the full dose into one bag, so halfway through each infusion I need to switch to a 2^nd bag. All that doesn’t exactly leave a lot of time for sleeping. I’m definitely getting much better quality sleep at home than I was in the hospital, but both Katherine and I are still pretty exhausted. Right now they haven’t set an end date for the antibiotic, and are waiting to see how the wound heals. I do have an appointment with Infectious Disease at the end of next week though, so hopefully we’ll have a clearer plan then.
 
I’ve also been kept busy with nursing visits! I have 2 home care agencies following me, one to take care of my infusions and PICC line, and one to take care of the wound vac. I had an infusion appointment the day I came home, and then a wound vac appointment over the weekend. And today was especially busy, because I had both! The infusion nurse came in the morning to draw my weekly labs and change the dressing on my PICC line, and the wound care nurse came in the afternoon to change the dressing on my wound vac. That will be the schedule every Monday for as long as I have both the IVs and the wound vac, and it’s a lot! In addition to that I also have wound vac appointments on Wednesdays and Fridays. Being sick is a lot of work!
 
And because we didn’t have enough going on, Katherine and I came down with colds over the weekend. Katherine is feeling pretty miserable, but thankfully my symptoms aren’t too bad so far. But my transplant team doesn’t mess around when it comes to infections, so tomorrow we need to shlep back into Philly so they can take a viral swab and try to identify what I’ve caught. Planning anything is difficult with my infusion schedule, plus I have to lug the wound vac with me wherever I go, so I’m not exactly looking forward to leaving the house. At least it shouldn’t take long.
 
So that’s the story around here. My days are jam packed with medical shenanigans, and I am TIRED. But I am very, very glad to be dealing with all this from the comfort of my own home!

Still in the hospital

Well, I’m still in the hospital.
 
They didn’t get the wound vac on until Monday afternoon, which meant it was too late for me to have a visit from home infusion. And then the doctors who did the wound vac didn’t put in the right paperwork, so it took until today to get things set up with the home care company that will be taking care of it (which, by the way, is DIFFERENT from the company who will be responsible for my IV infusions!). AND ALSO my doctor ordered a test to see if I need an IVIG infusion to boost my antibodies and help me fight off this infection, and they still haven’t gotten the results back. So right now we’re planning on discharging me tomorrow, but we also planned on discharging me yesterday and today, so I’m not holding my breath.
 
I’ve actually been pretty out of it the last couple days. Unlike what they initially told me, getting the wound vac HURT. To put it on they first took out the gauze that was packing the wound, and then packed it with a special sponge instead, which was painful by itself. Then they put the wound vac hose over that and secured it with a dressing for a tight seal. And then they turned the wound vac on, which hurt some more. The first day they put it on I ended up taking both oxycodone and Dilaudid, so I was high as a kite and knocked out for the night. I did better today, until they had to change the dressing because my skin was reacting to the adhesive. So that meant taking out the sponge, putting in a new one, and hooking the vac back up –  which was, once again, painful. Today I was able to get by with just oxycodone, but that pretty much left me in a stupor all afternoon. Apparently I’ll be getting dressing changes every other day when I get home, so I’m definitely not looking forward to that. It’s currently unclear how long the vac will be on, since they just have to see how healing progresses. Right now I’m continuously chained to an IV pole, but fortunately the home machine comes with a carry case, so that’ll be a little easier.
 
So now I’m once again dependent on the home infusion company’s schedule to determine whether I can go home tomorrow. They need to know if I’m being discharged by 11am so they can get supplies out to my home for a 2pm nursing visit. Depending on when this last test result comes back, whether or not I need an infusion, and how quickly they can do the infusion if I need it, I MIGHT make it home tomorrow. But if we don’t have an answer by 11am, discharge will be pushed off yet another day. Here’s hoping the last pieces fall into place SOON!

Recovery

Thankfully surgery went well! Much to my surprise my surgeon actually found and removed the suture that could be the source of these infections, so that was great news! I felt pretty rough immediately afterwards, but one dose of oxycodone later I was MUCH better. Things went pretty well most of the day on Friday until they had to mess with the wound. This time they did not stitch it up and instead packed it with gauze, so it was uncomfortable when they unpacked and replaced the gauze. I’ve also been getting eardrops for my ongoing ear issues, which requires laying flat on my side for a while so the drops can go through the ear tube and into my inner ear. Fortunately I don’t have to lay on my surgical site, but even laying on the other side tugs on and exacerbates things. So I’ve been taking oxycodone to deal with that, which means I’ve been sleeping A LOT. Which is one way to pass the time here.
 
The current plan is to put a wound VAC (Vacuum Assisted Closure) on the surgical site, likely on Monday. Apparently that’s a special dressing that’s attached to a pump, which removes pressure from the wound. This helps pull fluid from the wound, pulls the edges of the wound together, and promotes tissue growth to help it close. I’ve never had a wound VAC before, but it’s not supposed to hurt, and I’m able to go home with it. They have different size pumps, some which need to be attached to an IV pole, and some which can be carried around in your pocket. I’m obviously hoping for pocket sized, but I won’t know until it gets here.
 
The other big news is that they found more antibiotics for me! They actually found THREE antibiotics aside from Tobramycin, which is much better than last time! I was actually pretty worried about whether they would find more antibiotics, so that was a HUGE relief. They started me on one before surgery, but it turned out the homecare company couldn’t accommodate that one, so they switched me to another one. And in the end they decided that since my surgeon was able to clean things out so well, I only need one antibiotic this time. The schedule is a little annoying because each dose needs to run for 3 hours, so 3 times a day I’m chained to an IV pole for a while. But I’ve been through way worse infusion schedules that hardly allowed for any sleep, so I’ll take 3 time a day!
 
Now that surgery is done and my antibiotic is settled, we’re just waiting on the wound VAC. Then I’ll be able to finish up however long they want me on the wound VAC and complete the remainder of my 2 week course of IV antibiotics at home. I already met with a nurse from the home infusion company, and they’re ready to go as soon as my team approves discharge. The only catch is that they can only come out to get me started during my afternoon dose, since they can’t really send out a nurse at 6am or 10pm. If my team isn’t ready to discharge me early enough to get home for a 2pm dose, we have to wait until the next day. I highly doubt they’ll be able to pull everything together for a Monday discharge, but hopefully Tuesday will be the day!

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!

Lump drama

Lump did not, in fact, keep it together.

Over the last week I've been both concerned about and frustrated by Lump. I had a few consecutive days where it was constantly itchy and/or painful, which was wearing me down. I still had so many weeks to go until my scheduled appointments, and I was not looking forward to being perpetually uncomfortable for at least month. Thankfully it eased off for a few days, but then it started acting up again on Friday. By Friday night it was swollen and red and looked particularly angry.

Late Friday night I woke up drenched, and immediately knew what had happened. Sure enough, Lump had burst and released a shocking amount of pus. I didn’t feel capable of dealing with anything at 3am, so I just cleaned up and went back to bed and decided it could be a tomorrow problem. In the morning it was still oozing an appalling amount of pus, so we reached out to my doctor, who fortunately had given me his cell phone for emergencies. Given the sudden escalation in symptoms and obvious signs of infection, he decided we couldn’t wait for my scheduled appointments, and it was time to be admitted to the hospital to fast track things and start IV antibiotics. So off to HUP we went!

The big advantage of being in the hospital is that I don't have to sit around waiting for appointments. They sent me for an updated CT scan, and took cultures of the disgustingness that was draining out of me so they can finally identify the infection and determine the best course of treatment. They also got me started on both an IV and oral antibiotic that they hope will be effective against whatever I have. They’re currently debating whether or not I need an MRI, and working on scheduling surgery to clean out the infection and finally evict Lump. They MIGHT manage to get me in by Friday, but that's unclear because they’re trying to have both my transplant surgeon and a plastic surgeon be involved in the procedure, so that’s 2 busy schedules to coordinate. In any event, I will definitely be getting things taken care of MUCH faster than originally planned!

Unfortunately, my veins have been particularly terrible thus far. My first IV went bad in less than 2 hours, before they even had a chance to run anything though it. My second IV did better, but still didn’t even last a day. And both of those IVs took 2 tries each to get in. Thankfully, IV #3 went in on the first try. Here’s hoping it has more staying power than the first 2 did!

So right now I'm in the wait and see part of this hospital stay. Waiting to get the results back from my cultures and determine a treatment plan, and waiting to see when they can schedule surgery. But at least now the wait will be MUCH shorter than it would’ve been as an outpatient!

Medically busy again!

It’s been a medically busy month!
 
I started things off with a CT scan. Almost 2 months ago I noticed a lump on one of my transplant incisions near where I had an abscess a few years ago. It wasn’t visible and was barely noticeable, but I was obviously concerned due to my history. The CT scan fortunately didn’t show any signs of abscess or infection, and my doctor reassured me that it was just a suture granuloma, which happens when the immune system reacts to a foreign object (in this case, a leftover suture from my transplant) by trying to form a barrier around it and wall it off from the rest of the body. My doctor gave me the option to meet with a plastic surgeon and have it surgically removed, but I decided not to pursue that unless it became more of a bother. Well, barely a week later it started bothering. Not only had it grown, but it had become slightly red and sore, which are both bad signs. I’m now scheduled for an MRI in mid-December, and will be having a plastic surgery consult afterwards. Let’s just hope Lump can keep it together until then and I don’t end up rushing to the ER with more significant symptoms the way I did the last time I dealt with something like this.
 
A week after my CT scan I got to have a colonoscopy. Not only have I reached colonoscopy age, but both CF and transplant put me at higher risk for colorectal cancer. Unfortunately for me, the last time I had a colonoscopy a few years ago the prep didn’t fully clear me thanks to my stupid stubborn CF gut. So this time I got to do the extended prep, which meant 2 days straight of clear liquid diet plus a ridiculous amount of laxatives. And guess what? After all that, I wasn’t clear AGAIN! What they were able to see looked fine, but instead of waiting 5 years for my next one, I have to do it again in 2 years. And who knows what kind of godawful prep I’ll have to go through next time! I’m already dreading it!
 
The week after that I had my last scheduled appointment with Dr. Courtwright, my transplant doctor, before he moves across the country. He’s not actually leaving until December 13^th though, so if anything goes wrong before then he’ll still be my doctor. And with the current Lump situation, I wouldn’t be surprised if I see him again before he leaves!
 
Last week I had my annual appointment with my ENT. Though a recent CT scan showed that my sinuses are blocked, he actually didn’t think that I would get much benefit from sinus surgery. One the one hand I’m glad to not have to go through an unpleasant surgery, but I’m also disappointed that there’s basically no chance of ever getting my sense of smell back. It disappeared completely again several months ago, and though there was no guarantee that I would get it back even with surgery, I had some hope because I unexpectedly got it back after my last sinus surgery. But no surgery unfortunately means no chance of regaining my sense of smell. I can definitely live without it, but I do miss it sometimes. My ENT also looked at the ear that has been giving me problems and saw a lot of drainage from the ear tube. He gave me antibiotic and steroid ear drops, and sent off a sample to see what infection I have brewing in there. And OF COURSE, as always, it’s my nemesis pseudomonas! My ENT is currently consulting with both my CF team and with colleagues who specialize in ears to come up with a treatment plan. I actually was pleasantly surprised that he dealt with my ear at all, as previously he referred me to another ENT since he specializes in sinuses and not ears. Hopefully he’ll be able to come up with a plan that finally deals with this ear issue once and for all!
 
And that brings us to today, and my consult with an oral surgeon. A couple months ago I went to the dentist for the first time in years. Between transplant and Covid, dental appointments kind of fell by the wayside, but fortunately I have good teeth so I could mostly get away with it. For years I said that G-d balanced things out for me, and gave me good eyes and good teeth to make up for all my internal organs being trash. I never needed glasses, or braces, or any other significant dental work. In fact, I never even had so much as a cavity! Well apparently getting new lungs voided the contract, because earlier this year I finally got glasses, and a couple months ago they found the first cavity of my entire life. Unfortunately, it’s close to the nerve, so they have to either extract the tooth or do a root canal. On the plus side, it’s in a wisdom tooth which is fully in, so extracting it isn’t a big deal. My dentist wasn’t comfortable with the angle of the tooth, however, so she referred me to an oral surgeon. The oral surgeon said it should be easy to extract with just local anesthetic, so I have an extraction appointment scheduled in 2 weeks. Here’s hoping it goes smoothly!
 
Overall my medical needs have been keeping me pretty busy lately, with still more to come! Hopefully I can get these various issues taken care of quickly and things will settle down soon!