Home!

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

Donor Dash!

So this happened. Welcome to the 2019 Gift of Life Donor Dash, transplant unit style!

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!

Almost listed

So, I’m ALMOST on the transplant list.

The committee decided that I’m a good candidate for lung transplant, and they’re ready to list me. Buuut there’s one last hold up. For about 2 weeks now we’ve been trying to get authorization for Clofazamine, one of the antibiotics I’ll be taking to treat the mycobacterium. I’ll need to continue mycobacterium treatment post-transplant to prevent infection in the new lungs, and they need to determine whether I can tolerate Clofazamine or if they’ll have to find a different medication. So I won’t be listed until the stupid authorization comes through and I have a few days of Clofazamine in me. But once that happens, it’s on like Donkey Kong!

My health has definitely deteriorated during the last 3 weeks. They already gave me a Lung Allocation Score (LAS), which determines your placement on the transplant list, but they plan to redo some of my testing and the expected lower scores will bump me a little higher. If I continue deteriorating my LAS will keep going up, which means less time waiting for transplant. The expected wait time they initially told me of 3-4 months is now down to 2-3 months, and could get shorter. Basically, I should be sporting shiny new lungs for the summer. Talk about getting your beach body ready!

One of my nurses said if you’re getting a transplant anyway, it’s actually better to be relatively healthy and then suddenly get very sick very quickly. If you deteriorate gradually over time, you’re more likely to lose weight and muscle tone, both of which are important for recovery. Getting sick and getting transplanted quickly means your body is more likely to be stronger and more able to cope with the rigors of transplant. So apparently I’m doing this exactly right. Go me!

One big bummer is it looks like I won’t be discharged before Pesach. I started an experimental IV antibiotic on Wednesday (how cool am I?), and unfortunately it seems to be difficult to get, even more difficult to send home, and nearly impossible to ship out of state. They want me on it for 2 weeks, so unless they pull together a miracle I’ll probably be having my sedarim in the hospital. I’m really not thrilled about that, but it does fit with my current trend of hospitaling my way through the Jewish calendar. My rabbi pointed out that I should probably expect to have the transplant on Shavuos. He’s probably right!!

Aside from that it’s status quo around here. Please send red-tape cutting thoughts my way so I can finally get on the Clofazamine and get this show on the road!

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!

Hospital decor: Pole People!

The Pole People make their YouTube debut!