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)
Two weeks in the hospital. I think my brain is melting... This was last night's entertainment.
Send help.
Seriously, dietary? On what planet is a pile of corn a reasonable meal? The best part is it isn't even kosher! The kosher meals come sealed, whereas this was clearly prepared and plated with non-kosher utensils. So they gave me a completely inadequate meal that I can't even eat!
Good thing I usually don't eat their meals anyway and have my own food. I'm even more grateful now to the Becks, Berdugos, Friedners, and Katherine for providing me with delicious food for Shabbos!!
It’s been a bit of a mixed bag around here.
The good news is, we found an effective antibiotic that doesn’t have serious side effects. The bad news is, it can only be given in the hospital. Apparently this is a really new medication, and home infusion companies don’t want to touch it. It’s also very expensive, so even if we could find a home infusion company, insurance won’t pay for it. In the hospital, however, insurance pays a standard daily rate which covers all treatment and medications. This almost certainly costs more than just paying for the medication at home, but no one ever accused insurance companies of being sensible. I started the new medication on Friday, so I’ll be inpatient until August 27th for a full 2 week course. I’m actually extremely lucky that I didn’t need IV antibiotics before now, since the only other antibiotics my Pseudomonas is susceptible to are either ototoxic (toxic to the ears) or nephrotoxic (toxic to the kidneys). I already have antibiotic-induced tinnitus and mild hearing loss, and my anti-rejection meds strain my kidneys, so I’m fortunate that this other antibiotic came out!
In other news, as so often happens, my stomach decided to jump on the bandwagon and start making problems as well. Despite the fact that weeks of IV antibiotics basically gave me an unwanted colon cleanse thanks to unpleasant side effects, my stubborn CF bowels have somehow managed to start working on a blockage anyway. Fortunately we caught it before things got too bad, but I’ve been very nauseous for the last couple days. We’ve been slamming me with laxatives since last night, so that’s always a joy, but I think I’m doing better now. Here’s hoping that tomorrow I won’t wake up nauseous for a change!
In other news, as of yesterday I started taking… Trikafta! That’s the fancy triple combo CF drug that came out last year, which has been life altering for many CF patients. That’s also the drug I waited years for, since the previous genetic modulators didn’t work on my CF mutations, only for my lungs to crash and burn JUST before it came out. Trikafta won’t work on my lungs anymore since they have different, CF-free genetic material, but CF is a full body experience and it can still help with other problems. We’re hoping it will improve my sinuses and cut down on sinus infections, thus reducing the risk of lung infections. It might also help my bowels, which would certainly be nice. The downside is it can have unpleasant side effects, sometimes to the point that people can’t continue taking it. Right now I’m on a half dose to see how it goes. It also interacts with my anti-rejection meds, which is why we haven’t tried it before now. So we’ll need to monitor my bloodwork very closely and adjust dosages as necessary to keep everything safe.
Starting Trikafta now definitely has a bit of a “too little too late” kind of feeling. If it had come out a year earlier, back in 2018 when my lung function was still at 60%, it might have done amazing things and my life now could be completely different. I’ve mostly resigned myself to the fact that for some reason my life was meant to follow a different path, but sometimes it still stings. But hopefully it can help me keep these lungs going for a long time, and maybe reduce some of my day to day CF symptoms in the bargain.
On the plus side, I’m very glad that they managed to transfer me to my usual floor, Silver 11. They know CF and lung transplant inside out around here, and my med schedule has gone much more smoothly. And they know ME, which is really nice! Disappointing as it is to be inpatient, it’s been nice to see everyone and tell them how GOOD I’ve been doing overall since my transplant. The last time I was hospitalized on this floor was just before transplant, when I could barely get out of bed and things were pretty dire. Meanwhile, yesterday I walked 17 laps around the nurse’s station at a pretty good pace! Everyone has been very happy to see how healthy I look now!
So that’s the story around here. I’m in it for
the long haul, but hopefully Cefiderocol will finally kick this super stubborn
Pseudomonas to the curb!
They managed to get me into a room on my usual floor, Silver 11! Everyone on Founders 14 was very nice, but Silver 11 is like Cheers: Where everybody knows your name!
I just heard Hear Comes the Sun over the hospital intercom! That means a Covid patient was just discharged! First time during this hospitalization!
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!
Yesterday was LONG.
I went down for the bronchoscopy around 2:45pm, but didn’t go into the OR until after 4pm. When I woke up around 6:30pm they said a room was finally available and being cleaned, so I waited in recovery instead of going back to the ER. By the time the room was ready, however, it was 7pm shift change, and nothing happens easily at shift change. I eventually got upstairs shortly before 8pm, but I STILL couldn’t eat because my meds hadn’t arrived from pharmacy yet, and I can’t eat anything without digestive enzymes and insulin. I FINALLY got my first (and only) meal of the day at 10:30pm. Whew!
Unfortunately there wasn’t a room available on my usual unit, Silver 11, so I ended up on Founders 14 instead. Silver lining: Founders 14 has the BEST views!
Today we got an explanation for how on earth I ended up with pneumonia after a month of IV antibiotics. Despite the fact that testing in June showed that my Pseudomonas infection was susceptible to Zosyn, the new testing showed that it was RESISTANT. I don’t know when that happened, but clearly the latest round of IV antibiotics was ineffective. So far they’ve identified 2 effective antibiotics: Tobramycin, and Amikacin. Those names might ring a bell… Tobramycin gave me tinnitus, and Amikacin caused some hearing loss. We’d REALLY rather not use those antibiotics if at all possible, so they’re doing more testing to see if we have any other options.
I also learned a new word today: Immunoglobulin G. Since I’ve been struggling with stubborn infections lately, they did bloodwork to check my antibody levels. They’re supposed to be low since I’m immunosuppressed, but turns out they’re even lower than expected. Apparently this isn’t unusual after transplant, and has a pretty easy treatment. We obviously don’t want to lower my immunosuppression, so instead I’ll just use someone else’s antibodies! Immunoglobulin G is an antibody that can be taken out of donated blood and infused into someone who needs it. Hopefully it’ll be the boost my body needs to fight off this super stubborn Pseudomonas infection!
Unfortunately, these complications mean I’m not getting out of here too quickly. It’ll take time to complete testing and determine a course of antibiotics, and then they need to get me stabilized on the right dose before sending me home. So I’m here through the weekend, and then we’ll have to see how things go next week.
On the plus side, I did have a reassuring conversation with my doctor today. I was a bit alarmed by this whole situation, as it was far too similar to last year’s unsuccessful battle with treatment resistant Pseudomonas which resulted in my lung transplant. My doctor reassured me, however, that this time it will NOT cause permanent lung damage. It’s almost impossible to eradicate Pseudomonas from CF lungs. You can reduce and control the infection, but it’s always there, causing permanent damage which builds up over time. These lungs, however, are different. Once we find an effective antibiotic, we’ll be able to successfully treat and eradicate the infection before it causes permanent damage. Hearing that was a HUGE relief!!
So for the first time in over a year I’m settling in for a stay at my home away from home here at HUP. And we all know what that means… Pole People, of course!
Well that didn't exactly go as planned.
During the last week I've struggled with off and on low grade fevers. I've been pretty wiped out with headaches, body ache, and fatigue, but despite lots of testing we didn't see a clear explanation. The fever subsided after a few days, and I was hopeful that it was just one of those weird random things that goes away on its own. After 5 fever free days, however, the fever suddenly returned with a vengeance. I started off at 99.4 Tuesday morning, and my temperature slowly climbed all day. Though I was in touch with my transplant team throughout the day, it was only at 5pm that my temperature finally hit 100.4. They previously told me to call if it got that high, so I called the after hours number, and after consulting with my doctor I was off to the ER to figure out what the heck was going on.
As usual the ER was a tedious waiting game. Once I got to the back we did All The Testing: bloodwork, Covid test, viral swab, chest and abdominal CT scans. And finally we found an explanation. Despite doing 10 days of IV antibiotics in June, and another 3 weeks in July, I somehow have pneumonia in both the upper and lower lobes on the right side. Which is super weird, because I haven't been coughing, or particularly congested, or short of breath. If it wasn't for the fever, I wouldn't have even known anything was wrong! My doctor thinks that I once again have narrowed airways, only this time they're preventing me from clearing out mucus, which is causing pneumonia. Additionally, my sputum culture last week still showed Pseudomonas despite weeks of IV antibiotics. Apparently Pseudomonas REALLY loves me! If narrowed airways are preventing me from clearing out secretions, that allows the Pseudomonas to just hang out in my lungs and keep making problems. And Pseudomonas is LONG overdue for an eviction!
Currently I'm still in the ER waiting for a bed at my old stomping grounds, Silver(stein) 11. I'm also on the list to get a bronch today to open up my airways and clear things out. It probably won't happen until later in the afternoon since I'm an add on, which is unfortunate as I'm not allowed to eat or drink anything until after the procedure. Aside from that, the plan is to set me up with another round of antibiotics, get a new long term IV, and send me home within a few days to finish up on home infusion.
My summer is REALLY sucking. I'm grateful that
I don't deal with these issues anywhere near as often as I did pre-transplant,
but it's still been a very draining couple months. Here's hoping that Pseudomonas
finally gets the message goes away for good!
Baruch atah Hashem, Elokeynu melech ha’olam, borei minei b’samim
Blessed are you Hashem our G-d, King of the Universe, who creates different types of spices
This blessing shows appreciation for something that most of us take for granted: our ability to enjoy pleasant smells. We say it every Saturday night before smelling fragrant spices during the Havdala ceremony at the end of Shabbos. A few months ago, however, I had to stop saying that blessing. My sense of smell had disappeared completely a few months earlier, and I could no longer smell the spices. It’s very bizarre to stick your nose in something that you KNOW has a strong scent, and yet smell nothing. Life is just a little blander when you can’t smell anything. You don’t even realize how present scent is in life until it’s gone. I obviously could live without it, and would be ok if it never returned, but I definitely missed it.
Sinus surgery, as expected, was not fun. During surgery my doctor removed tissue and bone to widen my sinuses so they can drain more effectively in the future. My nose bled for a few days afterwards, so I had gauze tied to my face to keep from dripping everywhere. Initially I also had packing in my sinuses, which the nurse practitioner described as 2 tampons sutured into my nose. That stayed in for a week, during which my nose felt very stuffed up. Thankfully the packing was removed during the first follow up visit, which wasn’t exactly fun, but was definitely a relief to get out. I wasn’t allowed to blow my nose for the first 2 weeks after surgery, which is annoying when you can feel all kinds of gunk stuck in your head but can’t do anything about it. I was encouraged to do frequent sinus rinses however, during which I flush 8 ounces of saline through my nose, so that helped. And of course I’ve had varying degrees of headache throughout this whole process, which I expect to last for a few months.
Aside from all that, I also did 3 weeks of home IV antibiotics after surgery to help reduce the infections in my sinuses. That meant 3 more weeks of lugging around an IV pump 24/7, and 3 more weeks of really fun side effects. My body does NOT like Zosyn. I once again had significant GI issues, various nutrient and medication levels dropped because I wasn’t absorbing things properly, and I was utterly exhausted. Between the 10 days of Zosyn in June, surgery, and then 3 more weeks of Zosyn, I haven’t exactly been living my best life this summer.
But! A few days after the packing was removed, I suddenly realized that I could smell things again! After months of nothing it was SO exciting to run around sniffing different things and realize that I could smell all of them! My doctor was surprised and said that most of his CF patients don’t regain their sense of smell, as by the time they have surgery the receptors have already been permanently damaged. I’m very grateful that I still had some sense of smell left to be saved! It’s a small pleasure, but I’m extremely appreciative to have it back.
As of last week I finished the Zosyn, and my PICC line was removed after 6 straight weeks. I am VERY glad to finally be IV free! Hopefully I’ll manage to squeeze a little bit of summer fun into the limited space that’s left around Covid and medical shenanigans!
