Happy birthday to me!

Between the pain and exhaustion and general medical shenanigans, yesterday’s birthday definitely ranked towards the bottom of the list. But despite everything, we were able to squeeze some celebration in. Katherine and I managed to pull ourselves together and go on a brief excursion to Classic Cake for some yummy treats. Then my mom got a delicious steak dinner for me from Cherry Grill, and brought a bunch of food over here to share a nice birthday dinner with us. And because you can never have too many sweets, my friend Debbie Friedner brought over a box of mouthwatering donuts. With all that plus the heartwarming well wishes via Facebook and direct messages, I definitely felt very loved! I also really appreciate all the donations to my Facebook fundraiser. Thank you all for helping me celebrate despite everything I'm going through right now!

Dairy treats for me

Vegan treats for Katherine

Steak!

Chocolate chip lava cake

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!

Home!

After 10 days in the hospital I am finally HOME!!!

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!