The light at the end of the tunnel

I haven’t written because it kinda felt like every day was the same. The pain is improving, but I still have stitches and I’m still uncomfortable and I’ve still been on IV antibiotics. The one thing that changed is last week I got my drain out. It hurt but at least it was quick, and that’s one less annoying thing sticking out of my body.
 
But then! Today I saw my transplant doctor. He’s pleased with my recovery and said that the samples they took during surgery actually didn’t grow any pseudomonas, which is a good sign that hopefully the Amikacin will be able to fully eradicate the infection. And then he gave me the best news I’ve heard in a LONG time. He said that the Covid rate in my area is currently low enough that I can finally loosen up my lockdown and go back to regular post-transplant precautions! For the last 2 years my socializing has been very limited and almost exclusively outdoors. Sharing meals has been extremely rare as any unmasked socializing had to be outside at a social distance. But now! For the first time in 2 years, as long as everyone (excluding young children) is vaccinated, I can finally be unmasked indoors and share a meal together! With the caveats that I still can’t be around crowds, or anyone showing any symptoms of anything, or people who have recently been in a crowded place with a high risk of exposure to illness. And of course I’ll still wear a mask in public. But those are basically the restrictions I followed post-transplant anyway, since for me ANY infection has the potential to cause serious problems. Being able to finally step inside someone’s house unmasked is a HUGE improvement!
 
It’s kind of surreal, and I’m actually kind of anxious about it! I’ve worked so hard to stay safe and somehow managed not to catch Covid this whole time, so it’s very strange and a little scary to think about loosening up on Covid protections. At the same time, I’ve been pretty depressed lately, and I think a lot of it has to do with Covid. It feels like Covid sucked all the fun parts out of life and all I had left was endless medical complications. I wasn’t happy even before surgery, and having a painful procedure and lengthy recovery thrown on top was just too much. Finding out that I can start seeing friends again finally added a little light back into my life, and hopefully will help pull me out of the depressive funk I’ve been slogging through.
 
Today I finished my last dose of Amikacin. I’m keeping the PICC line until Monday to get my annual infusion of Reclast to treat osteopenia, and then hopefully after nearly 3 months I’ll finally get that out. Next Wednesday I’ll get my stiches out and will hopefully be more comfortable. And then the following day is Purim! Hopefully this will be the end of medical drama and the beginning of more fun holidays and celebrations with family and friends!!

Home sweet home!

I’m home! I love my bed and my kitchen! And my partner is pretty great too!! 😄
 
It’s wonderful to be home, but I’m definitely feeling pretty uncomfortable. The dressings came off yesterday, and I was surprised to see that they opened up about half of each transplant incision. So that’s a bunch of stitches on each side and they don’t feel too great, plus another hole where I have the drain dangling out of me. Not too much has been draining out today though so I’m hopeful that I’ll be able to get that removed next week. I kinda feel how I did a couple months after transplant in terms of discomfort. Fortunately this is nowhere near as bad as transplant though since they only had to cut the skin and not the muscles. And the little drain is nothing compared to the 6 huge chest tubes I had after transplant. But it still isn’t fun and I’ll be very glad when things heal up.
 
I’m pretty sure this infection has been bothering me for quite a while without me realizing it. Long after everything should have healed up post-transplant I was still having random pain in my incisions even before the lumps popped up. At the time we thought it was nerve pain, but now I think it might have been the pseudomonas infection randomly flaring up. Hopefully once this is all done I will FINALLY be pain-free for the first time since transplant.
 
There is one unsung hero in all this who I have neglected to mention until now, and that’s Rivka Sara Beck. Ever since I was hospitalized in December she has made sure that I have food every Shabbos, sometimes picking up food from other people, and usually making it herself. I am so fortunate to have such wonderful friends and am endlessly grateful for everyone’s support!
 
I’m definitely looking forward to having a very low-key Shabbos and continuing to recover in the comfort of my own home!

It's done!

They got me in! It took until around 2pm so it was still a long hangry day, but at least it’s done!
 
Thankfully surgery went well and they’re pretty confident that they were able to clean out all the infected tissue. They ended up doing both sides, which I’m actually happy about because I don’t want to have to come back and do this again later. The right side was able to be stitched up, but the left side has a drain in it to continue clearing stuff out. It’s basically a tube sticking out of me with a ball at the end that grossness (mostly blood) drips into all day long. Apparently both the drain and the stitches will probably need to stay in for a few weeks. I haven’t actually seen my incisions yet because they haven’t taken the dressing off, but I had a plastic surgeon working on me so I’m sure they’ll be minimal. I’m also pretty sure they cut along my existing transplant scars so it’s not like they’ll be anything new.
 
We’ve also started me on IV amikacin to finish clearing out any remnants of infection. That will be a 2 week course, but the good news is it’s only once a day! What a breeze! I actually don’t think I’ve ever had such a light infusion schedule and I’m super grateful for it, especially after how torturous my last infusion schedule was. Let’s all just pray that it doesn’t do any significant damage my hearing in the process.
 
And the best news is that maybe, HOPEFULLY, I just might be able to go home tomorrow! Everything is looking on track for discharge, but I know from past experience not to believe it until they’re actually wheeling me out the door. Here’s hoping!
 
It has been a LONG road dealing with these abscesses, but I’m finally starting to see the light at the end of the tunnel. Hopefully these will be the last steps to getting me back on track!

Fakeout

The good news is they actually managed to direct admit me and I didn’t have to go to the ER. The bad news is they didn’t do surgery today. Instead I wasn’t allowed to eat or drink after midnight, waited hangrily until 2:45pm, and then found out that they wouldn’t be able to fit me into the schedule after all. So that was fun. And I get to do it all over again tomorrow!
 
My transplant doctor is actually working in the hospital this week, which is convenient, and he was not impressed. Apparently they assured him that if he admitted me yesterday they would get me onto the surgery schedule today. There are no guarantees of course, but he thinks he made enough people feel bad enough about it today to get me on the schedule tomorrow. In his words he gave off “strong disappointed dad vibes,” so hopefully that’ll be enough!
 
I will say though that the new hospital definitely is fancy. The rooms are larger and have a much better layout than the ones in the old building. The TV is as big as I am, and has a screen with all the info about my providers and treatment plan that used to go on a whiteboard. It updates automatically in real time, so no more issues with people forgetting to change the info. Also, every time someone enters the room their name and picture pop up at the bottom of the screen, which is great for someone like me who is just terrible with names. The blinds are motorized and can be controlled from your bed, and the door and windows looking into the hallway have this cool glass that you can turn from clear to opaque with the touch of a button like magic. It’s also QUIET! I barely hear any noise from the hallway and haven’t heard a peep from my neighbors. So even though it sucks being stuck here, at least I’m hospitaling in style!
 
In a few more minutes I’ll be starting starvation round 2. Here’s hoping it goes much faster than it did today!

A plan at last!

We finally have a plan! It isn’t a particularly fun plan, but it is a plan nonetheless.

I had a follow up with my transplant doctor on Tuesday. We confirmed that Lump and Lump Jr. are now smaller after Lump popped, drained, and never grew back. We also confirmed that Other Lump has gotten bigger, which was obvious as it has been red and swollen for at least a week. And so, we finally came up with a treatment plan: surgery to drain Other Lump, followed by a 2 week course of IV amikacin. Unfortunately that requires being admitted for a few days while they stabilize the dosage before sending me home to finish up.

But what about the bacteriophages?? Well, we’re still waiting for Yale to turn them into a clinical grade product for me. If they’re ready before I finish the amikacin, I’ll probably start them immediately. If they’re ready afterwards, and the amikacin takes care of the infection, then we’ll save them for the next infection (because we all know I ALWAYS bring the drama). At this point I’m honestly kind of hoping they aren’t ready, because since they’re a weird experimental treatment they have to be given in the hospital, and I’m really not in the mood for a 2 week stay at Hotel HUP. So I’m just gonna hope that amikacin does the trick without damaging my hearing.

Of course, just as we came up with a plan, Other Lump decided it wasn’t getting enough attention. Barely a day after my appointment it burst dramatically and released an absolutely appalling amount of pus. It was basically my own private episode of Dr. Pimple Popper, and since I refuse to watch that show I didn’t exactly enjoy the experience. It then proceeded to continue draining for the next 16 hours or so, which I also didn’t enjoy. On the plus side, Other Lump looks and feels much better now! But my doctor still wants me to get it cleaned out, so I’m scheduled for surgery on Monday.

The plan for today is to admit me and get me started on IV amikacin. We’re hoping to pull off a direct admission this time instead of putting me through yet another ER visit. I’ll also get to experience the fancy new hospital building since this time I’ll be assigned to a surgical team and all the ORs are in the new building. If I have to be stuck at HUP, at least I get to do it in style! So I’ll be spending the rest of my weekend sitting around waiting for someone to call and either tell me that a bed is ready, or that I need to go to the ER and get admitted from there, and then settling into the hospital. Do I know how to party or what?

As not-fun as all this is, I am DEFINITELY looking forward to eventually being DONE with this round of drama. This stupid lump saga has dragged on for way too long, and I am extremely ready to move on with my life!

The hits keep coming

Can I return 2022? Mine is already broken.
 
Last week we were waiting for the results from susceptibility testing, desperately hoping to find an antibiotic with a less grueling infusion schedule. Instead, we found out that the previous 2 and a half weeks of sheer exhaustion were a complete waste, because MY INFECTION IS RESISTANT TO THE ANTIBIOTIC WE WERE USING. Not gonna lie, that was pretty crushing news, both because Katherine and I went through so much for no benefit whatsoever, but also because the only antibiotics left have bad side effects. Specifically, I have 2 antibiotics to choose from: tobramycin, which has already given me permanent (thankfully mild) tinnitus, and amikacin, which has already given me (also thankfully mild) hearing loss. The last time I tried tobramycin the tinnitus started getting louder in less than a week, so I decided to gamble on amikacin being slower to cause damage. Plus, hearing aids are a thing if necessary, whereas there is nothing you can do for tinnitus. What a garbage choice to have to make!
 
I have not yet started the new antibiotic schedule, because first they want to drain the abscesses so the antibiotics can penetrate more quickly. But they DON’T want to do full surgery, because my anti-rejection meds impede healing, so surgery could actually end up spreading the currently-contained infection without having a good arsenal of antibiotics available to treat it. Right now we’re waiting for the abscesses to get a bit bigger so they can go in and drain them with a needle, and THEN we’ll get me back on IV antibiotics.
 
We’re also exploring an experimental treatment called bacteriophage therapy. Bacteriophages are viruses that don’t cause infection in humans, but do infect and destroy bacteria. The catch is that each bacteriophage only targets a specific bacteria, so you need to cultivate exactly the right phage to treat an infection. There has been a fair bit of research on using bacteriophages to treat multi-resistant pseudomonas infections specifically, which is good news for me. So my pseudomonas sample was shipped off to Yale, and they were very impressed with how extremely nasty it is. Apparently it takes 4-6 weeks to get phage therapy approved and set up, so it’s a waiting game to see if I still need it by then or if the drainage and antibiotics take care of everything. At least I can say that I’ve gone to Yale and they were very impressed with me!
 
And because when it rains, it pours, we have even more on our plate. Unfortunately, after struggling for months, Katherine’s mother was sent home on hospice over the weekend. Katherine has been driving over an hour every day to be there, and will likely be visiting multiple times a week until she passes. To complicate things further, there was a potential Covid exposure in the home, so my doctor has recommended that I not go and that Katherine and I maintain social distance and wear masks to keep me safe. Hopefully we’ll be able to ease up on some of those restrictions soon, but for now the situation has been very difficult.
 
I really don’t have any good news to share right now unfortunately. I hope everyone else’s new year is going better than mine!

Exhaustion

I’m utterly exhausted.

As expected, this infusion schedule is brutal. The first few days were particularly fun because I was teaching Katherine how to do them, which meant both of us weren’t sleeping more than 3 consecutive hours at a time. Once she got the hang of it we sort of settled into shifts, but that still involves a very disrupted sleep schedule. We’ve both been kinda zombie-ing around for the last few weeks and revolving our lives around my infusions.

To add to the excitement, my PICC line was defective. I requested a double lumen PICC line, which means it has two hubs that can be used to simultaneously infuse different medications. I just knew if I had only one lumen they’d find another infection that needed a different antibiotic and would need to replace the line. Well joke’s on me, because from the day they put it in one lumen leaked and couldn’t be used, so just a few days after being discharged I got to go back to HUP to have my PICC line replaced. Fortunately PICC replacements are pretty easy, but it was still super annoying.

I also had 2 follow up appointments last week, one with Infectious Disease, and one with the transplant team. Of course all these appointments and procedures interrupted hours that I could have been sleeping, or messed up my infusion schedule, or both. And to top it all off, the CT scan I got on Friday showed that not only have my lumps not improved, they’re actually bigger. Fortunately my doctor didn’t seem concerned about this and reiterated that abscesses take a long time to respond to treatment. Which isn’t what I wanted to hear, but at least it wasn’t worse news.

The million dollar question is, how did I end up with pseudomonas in my chest wall?? Apparently CF lungs are usually really degraded and hard to remove, and during the transplant process infections can escape from the lungs into the chest cavity. The catch is that we would have expected any infection to cause problems well before now since I’m immunosuppressed. But my Infectious Disease doctor said she’s seen infections become active years after transplant, and my transplant doctor says that she’s the smartest person he knows, so I’ll take her word for it. It just confirms for me that pseudomonas is absolutely my lifelong nemesis. I guess every superhero needs one.

The hope now is that susceptibility testing will find another antibiotic with an easier schedule that can be used instead. Apparently the testing got held up by a paperwork snafu, but my doctor harassed them into submission and is expecting results any day now. I’m honestly not hopeful, as decades of IV antibiotics have basically supercharged my pseudomonas into a multi-resistant monster, but for some reason my doctor thinks we may end up with another option. It’s funny, every medical professional I talk to agrees that my infusion schedule is absurd and unsustainable, yet thus far no one has been able to do anything about it. Here’s hoping that changes soon!