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!

Going home!

I’m. Going. HOME!
 
In a surprising turn of events, everyone somehow managed to get it together despite the impending holiday weekend! I got my PICC line placed yesterday, and home infusion will be coming out this evening to get me all set up. So an unexpected miracle actually happened, and I’m going HOME!
 
I am VERY relieved to finally get out of here, but the next several weeks will NOT be a picnic. The antibiotic I’m taking is given every 6 hours, which is difficult enough, but it also runs for 3 hours at a time, which basically means I’ll be running infusions almost all day long. And last time I did this antibiotic on home infusion they couldn’t fit the full dose into 1 bag, so I actually had to run 2 separate 1.5 hour infusions 4 times a day. It’s a pretty grueling infusion schedule, and I won’t be getting many consecutive hours of sleep during the next several weeks.
 
Huge shout out to both Katherine and my mom, who have both offered to learn how to run my infusions and give me a break. I don’t talk enough in these updates about the awesome support they’ve given me through one medical crisis after the next. They’ve been a terrific team since before my transplant, always keeping me company in the hospital and bringing me whatever I need, running me to the ER at the drop of a hat, taking me to various appointments and procedures. I don’t know what I’d do without them! And then there’s all of the day-to-day love and support that Katherine constantly gives even when it’s not a crisis. Having a partner with a life-threatening medical condition is incredibly stressful and exhausting, but she just keeps pushing through it. I still don’t know why she signed up for this crazy life with me, but I am so endlessly grateful that she did!
 
I’m in for a long haul here, and I’m definitely not looking forward to it, but at least I’ll finally be HOME!

Rollercoaster ride

Pardon my language, but today has been a f***ing rollercoaster.
 
This morning my team came in and said that the stains (quick tests) came back negative, so I could go home while we wait for the results from the cultures (slower tests). Cultures can take weeks, so there was no point keeping me here when they didn’t even know which antibiotic to treat me with. I was THRILLED to FINALLY get out of here and get a bit of a break before starting IV antibiotics. Alas, the thrill was short lived. Barely 20 minutes later, just as I was finishing packing, I got a call letting me know that they unexpectedly got a result from the culture. Apparently the lumps are being caused by the usual suspect, my lifelong nemesis, pseudomonas. I should’ve known! So now I am NOT going home and am being started on IV antibiotics immediately. I won’t be here for the whole course, but the likelihood of pulling home care together before the holiday weekend is pretty slim. Maybe a miracle will happen, but otherwise I’ll be stuck here for YET ANOTHER holiday weekend.
 
This is the ABSOLUTE WORST time of year to get hospitalized. I recommend avoiding it at all costs.
 
This will likely be a lengthy course of IVs. Apparently it takes longer for antibiotics to penetrate abscesses because there’s no blood flow inside them. The infections are also close to the bone, so they want to be really thorough and make sure the antibiotics penetrate there too. So I might be on IVs for 6 weeks, which sucks. Then again, it doesn’t suck as much as a full year of antibiotics, which was one of the options if this was a mycobacterium. Silver lining?
 
Surgery is also up in the air right now. My surgeon doesn’t want to open me up until I’ve had a few weeks of antibiotics, and is actually hopeful that antibiotics alone will be enough and I won’t need surgery at all. The Infectious Disease team really wants the abscesses opened and drained because they’re concerned about the antibiotics being unable to sufficiently penetrate, and are very concerned about my pseudomonas becoming resistant to one of the only antibiotics I have left. The current plan is to reassess and make a decision after a couple weeks of IV antibiotics.

So here I am, still at HUP. I don’t think I’ve ever spent so much time sitting around waiting for things to happen during a hospitalization. Holiday hospitalizations are the WORST! But at least now we FINALLY have some answers and a treatment plan. Let’s all hope for no more drama so I can get out of here SOON!

Well we know what I don't have

I don’t have cancer!
 
The part I left out of the previous update is that Lump Jr. is actually in my breast. That sounded too alarming to publicize when we were 99% sure it was NOT cancer. There’s always that tiny chance though… Part of what took so long is that we needed to wait for the breast imaging specialists to come back from the holiday weekend. One mammogram and an ultrasound later we confirmed what we thought: NOT cancer. Yay!
 
The breast imaging team came to the rescue again today. They had a last minute cancellation and were kind enough to whisk me in for a biopsy instead of leaving it to the regular medical teams. They put needles into all 3 lumps and withdrew pus, which confirms that there is in fact an infection in there, but we won’t know which infection until the test results come back. We should have some results back within 24 hours, but if it’s a mycobacterium that could take weeks to grow and identify. At least we’re finally on the road to getting some answers!
 
I continue to sit tight in the hospital while we wait to see if the preliminary results give us any guidance in terms of antibiotics. I’m also supposed to see my surgeon to discuss the plan for opening me up and cleaning things out surgically, but apparently he did transplants both yesterday and today, so I got bumped off the schedule. That’s ok though, I’m glad people are getting their transplants! I hope they all do well!
 
In other news that I know some people have been waiting for, I made Pole People! This time I’m not using a pole though so they’re just all around the room. I actually had a fun Pole People related moment yesterday. I’m not on my usual unit, and I can’t remember ever staying on this specific floor, but apparently I did because one of my nurses recognized the Pole People immediately and was super excited! I hope you enjoy the latest crew as much as she did!

The waiting game

Well that was a long, boring weekend.
 
I found out on Friday that Lump 3 actually appears to be Lump Jr, and is likely an offshoot of one of my original lumps. They’re pretty sure the source is some sort of mycobacterium, but they need to biopsy everything to know for certain. Unfortunately Lump Jr is deeper than the initial, more superficial lumps, so now we need to consult with plastic surgery. And of course they had already peaced out for the holiday weekend by Friday.
 
I actually had the option of going home on Friday and pursuing this as an outpatient, but we had some concerns. For one thing, if anything went wrong I’d be back in the ER, and I already went to the ER twice last week. Aside from not wanting to spend hours waiting again, I definitely didn’t want yet anther exposure to the crowded, germ ridden ER waiting room. Also, being inpatient makes my case a higher priority and gets things done faster than doing it outpatient. And finally, Covid cases are ramping up and hospital beds are in short supply. My doctor was worried that they’d have trouble getting me in if I needed to come back – or worse, that outpatient procedures might start getting canceled.
 
So I made the difficult decision to stay here and just twiddle my thumbs all. Weekend. Long. I did petition to NOT be woken up for vital signs at 4am, and not to have labwork at 5am EVERY morning, and to get my IV out and preserve my precious veins since I’m not getting any infusions yet. And they actually agreed! Spending extra days in the hospital was annoying, but thankfully not too painful.
 
Today I should be meeting with plastic surgery to figure out when they’ll open me up, clean out these lumps, and find out what’s causing them. Depending on how that goes, follow up treatment could be super easy or REALLY hard. Best case scenario they can easily clean everything out with surgery and I don’t need any further treatment. Second best case scenario, it’s an easy infection that can be treated with oral antibiotics. More difficult scenario is a more difficult infection that requires a few months of IV antibiotics. And the worst case scenario is a complicated infection that could require a full year of IV antibiotics.
 
I’m obviously hoping for option 1 or 2, but I think 3 is most likely because that’s an infection I used to have in my lungs that could have escaped into my chest during transplant. But we really have no clue until they do surgery and biopsy everything. Hopefully now that the holiday weekend is finally over we can get the ball rolling and get things taken care of SOON!