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!

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!

Freedom!

2 and a half weeks later: IV free and home at last!

Counting down!

The countdown is on!

Tomorrow I will finally finish a 2 week course of Cefiderocol and hopefully be rid of both pneumonia and Pseudomonas. Nausea and GI issues are now mostly under control, aside from IV antibiotic induced side effects which should hopefully clear up once I’m IV free. I also started Trikafta will no ill effects thus far. We’re discussing possibly starting a nebulized antibiotic so I can get onto a home treatment routine that will hopefully prevent Pseudomonas from causing more problems. We’ve just about gotten everything sorted out and squared away at this point, which means I can finally. Go. HOME!

Today I got to see more of HUP’s Covid discharge ritual, as a Covid patient was actually discharged from the floor I’m on. In addition to hearing Here Comes the Sun play over the intercom, I saw the staff line the hallway and clap and cheer as the patient left the unit. I feel like I’ve now had the full hospitalized-during-a-pandemic experience!

We had all kinds of hallway drama and excitement today. An angry and possibly confused patient roaming the halls at 1am yelling at someone on the phone, an accidental code call that sent everyone scrambling, said code call malfunctioning and ringing for an hour before they could turn it off, another patient who refused to stay in bed and triggered the bed alarm every five minutes… The last 20 hours have been the kind of day that nurses HATE. I, of course, am loving it. My room is right next to the nurse’s station, so I have a front row seat to watch all the chaos. I do wonder how my old neighbor is doing though, and if she’s still gifting Founders 14 with her taste in music – whether they want it or not!

The plan for tomorrow is to finish my last dose of Cefiderocol, pull my PICC line, and send me HOME! I’m honestly a little nervous to be IV free since the last time we pulled my PICC line I ended up in the ER less than 2 weeks later, but I’m hopeful that this time stubborn Pseudomonas has finally been evicted. I’ll find out for sure in a few weeks when we do follow up testing. But whatever the outcome, I’m VERY much looking forward to being home!!

Home sweet home!

I'm home! My nose is still bleeding and I feel disgusting and I'm utterly exhausted, but I'm home. And on the plus side, my pain is already MUCH better. Now it's time to sleep alllll Shabbos!

Home!

After almost 6 weeks in the hospital, I am FINALLY home!!

Listed!

As of this week, I am officially on the transplant list. FINALLY.

Now the waiting begins. The expected wait time is 2-3 months, but technically I could get the call at any moment if I happen to be the best match available when lungs come in. It’s kind of surreal, knowing that at any moment without warning I could be whisked off to massive life changing surgery. If I think about it too much it’s kind of scary, so I’m mostly not thinking about it. Same when it comes to the recovery process: I know it’s going to be grueling and painful, but I can’t do anything about it, so I’m just trying not to think about it. I’m more focused on how unpleasant my now is, and how ready I am for it to change.

I’m also very, very tired, so I don’t actually spend huge amounts of time thinking about much. For the most part I’m too exhausted for big thoughts and feelings. These days I kind of feel like I’m just… existing. And that alone is wearing me out. My existence right now is usually pretty uncomfortable, which is draining on multiple levels. I’m always, always struggling to breathe, some hours worse than others. Sometimes it really feels like I’m breathing through a straw, which is incredibly uncomfortable. I’m also still coughing up alarming quantities of thick, nasty mucus. I feel like I’m stuck in an infinite mucus loop: as soon as I cough stuff out, I fill right back up again. It’s exhausting.

Last week I had the added bonus of nausea and GI issues, probably due to the 7 different antibiotics I’ve been taking. So that just sucked all the life out of me, and I spent a lot of time curled up in a cranky ball of misery. Thankfully that seems to have eased off this week and I’m a little more functional. I’ve also been slightly more awake this week, so I guess the experimental antibiotic is doing something, even though it’s not as much as we would like. Due to this they’re extending it for up to 1 more week to see if we can squeeze out any more improvement. I’m all for improvement, but I’m also all for going home already, and am not thrilled that I’m stuck here at least until next week. But it does seem like I MIGHT be able to go home sometime next week, as long as I don’t do anything weird. They also have to make sure that the oxygen concentrator I have at home is strong enough for my new oxygen needs, and arrange for a replacement if necessary. I’m not feeling any better than when I was admitted – truth be told, I’m actually doing worse – but at this point we don’t really have any expectation of me doing better before transplant. If I’m going to feel gross anyway, I’d much rather do so in the comfort of my own home.

On the plus side, Pesach in the hospital wasn’t as bad as I anticipated. It turns out that a family a few floors down got a conference room and was making a seder, and they were thrilled to have a guest. So instead of a depressing seder-for-one on my tray table, I got to have a real seder with good company. We even had hot soup and food, which was so exciting! I don’t have any way to heat food up here on Shabbos and yuntiff since appliances aren’t really allowed, and I expected to eat cold food all yuntiff. But some family members were staying in a nearby apartment with a hot plate, so they brought thermoses and insulated bags, and we had warm food! It’s amazing how such a small thing can make such a big difference!

So that’s the story here as we head into the last days of Pesach. Here’s hoping that, just as the Jews left Egypt so unexpectedly fast that they couldn’t even bake their bread, my transplant comes through with such unexpected speed that it makes our heads spin!

Keeping on keeping on

Well, things haven’t exactly been going well around here. But then, I didn’t expect things to go well. At least I’m not disappointed.

After 3 weeks in the hospital, I’ve made no improvement. My lungs are still horribly congested, I’ve needed more supplemental oxygen (currently up to 5 liters at rest), my heart rate is sky high, and my endurance is terrible. Honestly, I feel like I may have even gotten slightly worse. If I did a pulmonary function test now, I have a sneaking suspicion that my numbers might actually be lower. Sigh.

My pseudomonas infection is being extremely stubborn and resisting all the antibiotics. The only ones left are ones that have risky side effects, such as hearing loss or kidney damage, or experimental treatments. I’ve already been on one antibiotic called Amikacin, which is related to Tobramycin and can cause hearing loss. Unlike Tobramycin, however, thus far Amikacin has not made my tinnitus worse, so we stuck with it – until this week, when a test showed that my hearing has deteriorated since the last time I was tested a year ago. Since the IV Amikacin wasn’t having a huge impact anyway, we switched to nebulized Amikacin to preserve my hearing. Most of my hearing is still at the low/borderline end of normal, but apparently I do really poorly with high frequencies. Whatever, who needs high frequencies? I’m not a dog!

I’m also on IV Colistin, which can cause kidney damage. We’re monitoring things very closely, and so far so good. Unfortunately, it doesn’t seem to be doing much in terms of actually making me feel any better. They’re now in the process of getting access to an experimental antibiotic which I may or may not be resistant to. We already determined that I’m resistant to the other experimental antibiotics – which actually impressed me, my super pseudomonas is resistant to drugs that AREN’T EVEN OUT YET – but for some reason this last one won’t let you test for resistance until you get approval to take it. So we’re going to start the drug and THEN test it, which seems a little backwards, but whatever. I’ve definitely seen weirder and more backwards things in the medical field.

They’re also getting things set up for me to start treatment for the NTM (non-tuberculosis mycobacterium). They don’t really think that’s the cause of my problems, but we’ve treated everything else so that’s the only thing left. Fortunately, they seem to have decided that nebulized Amikacin is adequate and I will not have to use IV Amikacin or Tobramycin. They’re still working on getting access to one of the other antibiotics I’ll need, but hopefully that should be settled this week.

On Monday I finished the last of my pre-transplant testing. Some of the tests are to determine how sick and in need of a transplant you are, but most of them are to make sure you’re healthy and strong enough to actually survive a transplant. Thus far I seem to have passed without a problem, so we’re all expecting the transplant committee to approve me when they present my case again on Thursday. It’s also likely that I’ll be listed immediately since I haven’t shown any improvement thus far.

I’ve been spending a lot of time time sleeping lately. Aside from normal hospital exhaustion, I also have pneumonia exhaustion, and just breathing takes a lot out of me these days. I’m also hacking up alarming quantities of mucus, which is very draining. I’ve spent a fair amount of time being extremely cranky, as Katherine and my mom can attest to. It’s hard to maintain a positive outlook when you feel so awful so much of the time. My nurses have definitely noticed that I’m not my usual chipper self, and that my health has deteriorated pretty dramatically just in the last few months. But they also say that I have a good attitude for going into transplant, and they’re hopeful that I’ll do great and feel so much better afterwards.

We’re hoping that I MIGHT be able to go home next week – not because I’ve recovered, but because there won’t be anything else they can do for me here. Once they get me set up with the last antibiotics to treat the pseudomonas and the mycobacterium, there isn’t really anything they can do here that I can’t do at home. It’s definitely better for me to be at home if possible, where I’ll be away from all the hospital germs, moving around more, and eating what I want when I want it. Activity and nutrition are VERY important pre-transplant, as the stronger you are going in, the more likely you are to recover well. I’m not thrilled that I came in with pneumonia and will likely be leaving with pneumonia, but if pneumonia is gonna be my way of life these days, I’d much rather have pneumonia at home!

Freedom!

A full 3 weeks later, I am FINALLY home!!! Since I spent every last day of Chanukah in the hospital last year, I just now lit my menorah for the first time in 2 years. I don’t think I’ve ever said a shehecheyanu with that much kavanna! I am so grateful to finally be home and to have the chance to celebrate even part of Chanukah this year!

Almost there!

B”H I think I have FINALLY turned the corner!

The last couple days I’ve been noticeably less dependent on supplemental oxygen. I’ve mostly been off it while at rest, and haven’t needed as much while walking around. Overall I’m breathing and moving better and have more energy. It seems that the Fancy Restricted Antibiotic is doing the trick!

Today my doctor gave me the best Chanukah present ever by finally talking about DISCHARGE! I still need more treatment, but thankfully I’ve gotten to the point where I don’t need to be in the hospital for it. The plan is to get me back on home IV antibiotics and fluids so I can finish up the Fancy Restricted Antibiotic in the comfort of my own home. I’ll also still need to make sure to do LOTS of extra nebulizers and chest PT to keep working on clearing out the remaining chest congestion. But it’s so much easier to do all that at home instead of in a hospital bed!

The question now is how I end up feeling tomorrow and how long it takes to set up all the home care services. If all goes well, I should hopefully be going home within the next couple days!

I am SO grateful that I will be able to have at least part of Chanukah at home and finally get to light my menorah! Turns out the Fancy Restricted Antibiotic really was my Chanukah miracle!

Homeward bound!

I'm going home!