Happy Purim!

Initially I wasn't going to make a costume or bother with a theme for my shalach manos, but I decided that would just make Purim even MORE depressing. So instead, my costume pretty much sums up how life feels right now! Despite everything, I got to go outside a bit and see a few people and even have a delicious meal from Izzy's Smokehouse. And then I got a rambling blessing in Yiddish from an outrageously drunk chasid, so overall I'd say my Purim was a success!

Hopefully next year we'll finally be able to celebrate together in person!!!

Living on the edge

While discussing Katherine’s latest electric vehicle (in this case scooter) induced injury, and how the risk is part of the fun: 

Me: For me, just going outside is an extreme sport with risk of death. If I want to get really wild and crazy, I'll eat a rare steak!

(One of the many post-transplant rules is no undercooked food due to the risk of infection)

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!!

Who are the people in your neighborhood?

Some of you know that I’m VERY nosy when I’m in the hospital. I usually leave my door open during the day so I can hear hallways happenings and keep track of what’s going on around me. I LOVE some juicy hospital drama! When I first arrived to the unit, I was disappointed to see that I was all the way at the end of a hallway, thus limiting my opportunities for spying. Little did I know that across the hall is the most dramatic room on the floor!

I knew something was up as soon as I arrived and heard music BLASTING from my neighbor’s room, to the point that both the transport tech and I commented on it. I ended up making eye contact with my new neighbor, and tried to be friendly by saying “Sounds like a party! Can we join?” But she just… stared… and possibly looked a little angry? I felt bad and hoped she didn’t think I was judging her music.

A few hours later, however, I definitely WAS judging her music. The party was still going strong at midnight, and though I’m a night owl, I felt bad for my other neighbors who were presumably trying to sleep. Even with my door closed I could still hear the music pretty clearly. I asked a nurse why they didn’t close her door, and he implied that she’s been here a while and there have been some issues when things aren’t the way she wants them. He did feel bad though and offered earplugs. I joked about playing my own loud music and starting a competition, and he said someone else actually did that, and it resulted in a lot of yelling back and forth between the 2 rooms! So I guess I’ll save that plan for if I get REALLY bored.

The next day the music was off, but I discovered that my neighbor is a LOUD talker. I clearly heard every conversation that happened in that room all day long. She seemed friendly, and clearly has been here for a while, as she cheerfully greeted every nurse and tech by name when they passed her room. So I decided to make it my mission to become friends! When I went for a walk up and down the hallway, I made eye contact, smiled, waved, and said hello – and she reciprocated! Success! Later I got some non-kosher pudding on my lunch tray, and I asked a nurse to give it to my neighbor and let her know it was from me. Shortly afterwards I heard her very enthusiastic response loud and clear! When I went for another walk I asked how the pudding was, and she said it was delicious and happily thanked me. So I THINK I’m officially in her good graces!

During the day she mostly chatted (loudly) with a visitor and watched TV, but later at night the music was back. Conveniently I mostly agree with her taste in music, so I found myself in the bizarre position of listening and singing along to music coming from another room! I even tried an experiment and opened up Shazam to see if the music was loud enough for it to identify songs. And the result was… YUP!

Fortunately I’m pretty laid back and the goings on across the hall mostly amuse me. This isn’t ugly drama like screaming and moaning, or annoying drama like never ending bed alarms. I have a little clay left, so I might even make a Pole Person and send it over with a nurse. The nurses thought she would LOVE that –  and I know I’ll definitely hear her reaction!

You gotta make your own entertainment when you’re stuck in the hospital. This time it seems like I hit the jackpot!

Up and down but mostly up

What a week!

Last weekend I decided it was time to do something new with my hair, since most of the purple had washed out. One box of hair dye and a few hours later, I had successfully turned my hair, my skin, and my bathtub a stunning shade of Sonic the Hedgehog blue. Apparently allowing a bottle of hair dye to fall into the hands of a novice was a disaster waiting to happen. Anyone considering using Splat’s Midnight Indigo, be warned: that stuff is basically a nuclear bomb of color! I loved what it did to my hair, but was less than thrilled about becoming half Smurf in the process, and about the Jackson Pollack paint spatters all over the bathroom. Fortunately most of the extraneous color came out with a lot of scrubbing, though I keep turning the bathtub blue all over again every time I take a shower. After all this I may never touch blue hair dye again, but at least it’s fun for now!

On Monday I had my monthly bronchoscopy. Usually it just leaves me groggy and with a moderately sore throat for about a day, but for some reason I had a much rougher recovery this time around. When I woke up afterwards my throat was KILLING me, I was nauseous and had a headache, and I was very groggy and wobbly. It took me days to feel human again, including one night where I didn’t sleep at all due to persistent coughing because my throat was so scratched. So that was loads of fun. On the plus side, my doctor said my airways definitely looked better than last time. Nothing was clogged with debris, and though the airways were narrowed, they weren’t AS narrow as the previous time. He said it’s still too early to see real results from the Sirolimus, but hopefully it will have an impact by the time I have my next bronchoscopy. And HOPEFULLY soon we’ll be able wait more than 4-6 weeks between bronchoscopies.

Side note, the Bronchoscopy Collection is growing nicely. Right now they all live on the coffee table, but a few more bronchoscopies and they may need to find a new home!

On Friday I had an appointment with my transplant team, and did pulmonary function testing. Since I was several days post-bronch, my airways were pretty much at their best. Even so, I was surprised to find out that my lung function was up to 90%! That’s the highest I’ve managed post-transplant! It was very exciting to break into the 90s, so of course Katherine and I had to celebrate with Classic Cake!

It was an up and down sort of week, but fortunately I did eventually recover from the bronch, and definitely ended on a positive note. Hopefully everything will continue on an upwards trend from here!

Living the high life

That moment when you take a painkiller and realize that it doesn't actually reduce your pain, it just makes you care less about being in pain. Which I guess is an improvement?

Also, on Facebook I wanted to put "Feeling high," but they didn't give that as an option so I had to settle for "Feeling chill" instead. Don't judge my life choices, Facebook!

Transplant humor

I Survived a Lung Transplant and All I Got Were These Stupid T-shirts  😂
#TransplantHumor

Donor Dash!

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

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!

Hospital decor: Pole People!

The Pole People make their YouTube debut!

Hanging in there

Lately it seems like every time we do a sputum culture we find a new infection. I think my lungs put up a flyer at the hottest bacteria hangout. “Vacancies available! Low prices! A comfortable place to raise your spawn!” This month’s pest: MRSA. I’m kind of feeling like a leper these days, since I know MRSA is supposed to be highly contagious, but I’m trying to stay calm since healthy people aren’t supposed to be susceptible to it. It’s unclear whether MRSA is the cause of my recent health struggles, but we aren’t taking any chances, so I started IV Vancomycin on Friday to try to eradicate it.

I’ve never taken Vancomycin before, so they also sent out an “anaphylaxis kit,” which wasn’t alarming at all. Fortunately the first dose went well and the anaphylaxis kit remains unused. Unfortunately, after a couple days I developed a rash all over my torso. It took 40 years, but it seems we finally found a medication that I’m allergic to! Due to this we stopped the Vancomycin and are switching me over to an oral antibiotic. In the meantime, the rash still hasn’t gone away and actually seems to be spreading, despite the fact that my last dose was Sunday night and I’ve been taking Benadryl multiple times a day. So that’s been fun. Of course, I also just realized that my Benadryl expired in September of 2017. Maybe some non-expired Benadryl will work better.

Aside from all this, my lungs decided to bring the drama and bleed Friday night. I thought the leaky pipe issue was under control, but apparently not. Thankfully it was “only” 15 mL, which for me isn’t too bad. I did make an appropriately dramatic scene though by spraying blood all over the white bathroom sink. If it wasn’t Shabbos I totally would have taken a picture of the crime scene for posterity. On a related note: squeamish people should never, ever randomly scroll through the pictures on my phone. You never know what random horrifying medical disasters you might find in there.

I’m also still very hoarse and scratchy as well as super congested. I haven’t been sleeping well because I wake up rattling and coughing multiple times overnight. But I’m a little less tired with the higher dose of Prednisone, and I think my oxygen is doing a little better this week.

I know none of this sounds great, and honestly I’ve been having a pretty cranky week. But despite all this, I did have one really good day, because 2 friends who couldn’t make it to the party made a special trip in from out of state to visit me! Sarah and Anna joined forces to drive in from Cleveland and Pittsburgh for an awesome roommate reunion. And unlike the actual party, we got to spend hours chatting and hanging out together, which was wonderful! I’m so lucky to have such terrific friends!

Also, Sarah wrote a thing about me, so I’m basically famous now. Get in line for autographs everyone!

www.ou.org/life/inspiration/the-40th-birthday-bash-appreciating-each-day

They see me rollin'

I’m still dealing with what I’m now thinking of as Leaky Pipe Syndrome. Thankfully I haven’t had another full bleed, but I keep randomly streaking. Yesterday I finally managed 48 hours blood-free and resumed one of my treatments, only to streak at the end of the day and be forced to start all over again. Previously we wouldn’t react so strongly to just a little streaking, but my recent history of Big Dramatic Bleeds makes everyone anxious so we’re being very cautious. I have to keep reminding myself to Be Very Chill and not do anything to elevate my heart rate, which these days basically means not doing anything at all exerting. I am not enjoying being so limited and feeling this fragile.

Today I got my first experience using a motorized cart at Shoprite. I really wanted to actually go food shopping instead of trying to figure out what I needed online, but I also knew it definitely wasn’t safe to do that much walking. So I swallowed my pride and grabbed a motorized cart. I did feel awkward about looking perfectly healthy while puttering around on a scooter though, so I kept my oxygen on the whole time even though I didn’t really need it once I was sitting. I figured no one would question the girl with the nasal cannula. I managed to only run over Katherine’s foot once, and though I ALMOST knocked over a couple displays, nothing ACTUALLY ended up falling. Using the scooter ended up being a weird combination of fun, annoying, and occasionally slightly terrifying. Those things are harder to drive than you’d think!

Katherine has been amazing through all of this craziness. Since I’m mostly incapacitated, almost all the household tasks have fallen to her. I can put together a shopping list and zoom around on my scooter picking things out, but she’s the one shlepping it all home and putting everything away. Not to mention cleaning, and laundry, and just about all the things that keep a household going. I feel terrible about not being able to contribute much, but she does it all without complaint and reassures me that she’s happy to take care of things. I’m not sure how I got so lucky!

Of course, she did get entertainment value watching me almost take out an entire cereal display with my scooter, so maybe it’s a fair trade. Here’s the photographic evidence she took of my Shoprite experience. Maybe next time she’ll get video!

I've been nerfed!

In the gaming world, “nerf” is a slang term for when game developers make changes to reduce the power or abilities of a (usually overpowered) character or item. Between my affinity for gaming and the many times I’ve imagined what I could accomplish in the world if I only had my full strength, this meme seemed made for me!

Chronic illness vs Demonic possession

https://twitter.com/AaronLinguini/status/1004116559571312640

Slow going

If I had to pick just one word to describe this hospitalization, it would probably be “slow.”
I’ve definitely improved from when I got here. My airways are more open and I’m more awake, and I’m using less supplemental oxygen. But any progress has been incremental and very, very slow. At this point I’ve basically been stalled in the same place for nearly a week now. My airways are better, but still tight. I’m still congested. I’m still dependent on supplemental oxygen both at rest and with exertion. I’m also still on a high dose of steroids. I got my nurse to pull up some of my test results today, and not only has my white blood cell count remained at the same elevated level (which means I’m still battling infection), but today’s chest x-ray looked about the same as the one we took when I got here. I just don’t seem to be gaining ground.
Today I got to have a special consult with the Infectious Disease team, which I thought sounded wonderfully dramatic. It was particularly dramatic when they stood outside my door, still in the hallway, and loudly announced “We’re here from INFECTIOUS DISEASE.” So I’m pretty sure the whole unit now thinks I have the plague or something. Making friends and going places!
The purpose of the consult was to determine whether or not I could get approval for a “restricted” antibiotic. Due to the ever-increasing risk of treatment-resistant bacteria, the hospital holds a few antibiotics in reserve to only be used if nothing else works. By using these antibiotics sparingly it is hoped that they will remain effective for longer. Since I’ve been less than responsive to treatment for a few years now, with this exacerbation being particularly bad, I got the green light to get what I am officially calling Fancy Restricted Antibiotics. I got the first dose tonight, and they’re giving me up to a week to see results. If it helps, I’ll get a full 2 week course. If it doesn’t, they’ll (I imagine) whisk it back to a secret vault somewhere and lock it up tight until they can find some bacteria who actually appreciate it, and will put me back on regular antibiotics.
The big question that no one can answer is how much, if any, permanent lung damage I’ve taken this time around. It’s possible that this is my new baseline and I can’t get any better. It’s also possible that I *will* get better and am just doing so very, very slowly. Unfortunately there’s no way to predict the outcome and we just have to wait and see, possibly over the course of weeks or months. I’m trying not to be an impatient patient here, but it’s not easy.
On the plus side, now that I’m more awake, I’m more able to handle visitors. Please plan it with me though so I don’t have too many people here at once – I’m ready for a few visitors, not a party. Also, if you have ANY cold/flu/respiratory symptoms whatsoever, or have been around people who do, PLEASE keep those germs far, far away from me. If you’ve been exposed to a respiratory infection, it’s entirely possible for you to be contagious before you even start showing symptoms. I don’t even want to imagine how miserable I’d be if I caught a virus on top of the current mess.
Here’s hoping the Fancy Restricted Antibiotic ends up being my Chanukah miracle!

Waiting room shenanigans

2 hours in the HUP ER got Katherine like:

3 and a half hours in...

Worn out

I haven’t posted for a while because I wasn’t exactly sure what to say. After the last round of IVs I was pretty good for about a month. In early September, however, I started having trouble breathing again. We thought it might be due to seasonal allergies and played around with my prednisone dosage, which helped a little, but I was still fatigued and short of breath. It wasn’t TOO bad though, and my pulmonary function numbers didn’t drop much, so we kept bringing me in for appointments every 2-3 weeks and trying different things. New inhaler – no change. A week of IV hydration – no change. I was getting by, but the whole thing was pretty exhausting and demoralizing.

Last week my doctor noted continued congestion in my lower lobes, which is unusual for me. Since nothing else had worked and I still seemed to be in a low-level CF exacerbation, she suggested starting home IV antibiotics, which actually surprised me. It’s gotten difficult for me to figure out when I just have to put up with feeling kinda gross on a day-to-day basis, and when we should try more intensive treatment. I know when I’m REALLY sick, but deciphering  the low-level dysfunction week after week is trickier. Part of me was very frustrated to go on IVs again, particularly after not getting much relief from the last round, while another part was relieved that maybe I don’t have to live like this and can hopefully feel better.

Turns out I went to the doctor at exactly the right time, because that very night things took a turn for the worse. I started running a low-grade fever and developed a horrible hacking cough that kept me up all night. Cough drops, cough syrup, tea with honey, soup – nothing helped. After 4 days of this, the hacking cough transitioned into miserable chest congestion. At this point, I haven’t gotten a decent night’s sleep in a week, my throat is ragged, and I’ve had an off-and-on low-grade fever every day. It’s been pretty pathetic around here to be honest. I’m shambling around like a zombie, moaning and groaning, mainly communicating by grunting with different inflections. I’ve been too much of a mess to even write a health update about it until now. Send thoughts and prayers to poor Katherine, who has a front row seat to all the drama and misery. I keep telling her to just take me out back and shoot me, but for some reason she refuses. Something about, “You’re not Old Yeller,” bla bla bla. Whatever.

Thankfully, things are slowly improving, and I have hope that I might even manage to be a semi-functional human being again someday. Hopefully sooner than later.

Drama free and moving on

You know how some places have those signs, “This workplace has been incident free for x days?” Katherine and I decided that I should have one for bleeding. Current count: 17 days!

Since I’ve managed to stop bleeding and my lungs finally sound clearer, I’m finishing up one last day of IV antibiotics and fluids and then calling it quits for this round. After being on IVs for a full month, I am very much looking forward to freedom and a full night’s sleep! Next task: Getting back to pulmonary rehab and rebuilding my stamina. I’ve been trying to keep somewhat active since the bleeding settled, so hopefully I haven’t deconditioned too much. I’m also hopeful that maybe I’ll manage another few months of relatively good health like I did after the last round of IV antibiotics. Fingers crossed!

One less exciting bit of news is that I’m starting to show side effects from long-term steroid use. A scan showed that my bones are thinning, not quite to the point of osteoporosis, but definitely on the borderline. It’s not a huge deal, but it’s something to be aware of. That should become less of an issue as we slowly taper the Prednisone down, and hopefully I’ll be able to get down to a maintenance dose that’s low enough to have minimal long-term impact. In the meantime, I’ll be starting medication to help rebuild bone density and hopefully prevent osteoporosis.

On the other hand, I also got some unexpectedly good news! Apparently by the end of May I reached the out-of-pocket maximum on my medical benefit, which means medical is now covered at 100% and I no longer have any medical copays (though I still have prescription copays, as the pharmacy benefit has no out of pocket maximum). I was surprised, as I have spent less than half of the $6,700 I was anticipating. It turns out that some of my more expensive specialty medications are covered under the medical benefit instead of the pharmacy benefit, so those copays made a significant dent in my out-of-pocket maximum. Even better, I have a grant that covered those copays, so I didn’t even have to pay them myself! Having my out-of-pocket maximum essentially halved was a HUGE relief and will make the rest of the year MUCH easier. Additionally, I got two other prescription copay assistance programs set up, and my pharmacy expenses finally hit the catastrophic coverage phase, which means that my prescription copays have dropped significantly. Now that I have everything set up, next year should be much smoother financially!

It’s been a difficult summer, but B”H things are finally looking up. Looking forward to getting back on track and hopefully squeezing in a few good months before the next round!

Dance therapy

Who needs pulmonary rehab when you have Dance Dance Revolution? I had to give up after the second round though when my oxygen started dropping. It's a work in progress! Also, we've officially found a game where Katherine wipes the floor with me lol!

Multitasking: CF Edition

That moment when your afternoon IV antibiotic coincides with grocery shopping. Just shooting up in Shoprite, no big deal! #CFLyfe