It's been a long month

What a month!
 
It took a couple weeks, but thankfully Katherine and I have recovered from Covid. The Remdesivir infusions went well, and thanks to my friends I had plenty of food for Pesach (Passover). Unfortunately I kept struggling with nausea, and was wiped out from off and on low grade fevers, so my seders weren’t terribly festive. But I made it through Pesach, and my symptoms didn’t turn into anything serious, so I didn’t have to go to the hospital. Yay!
 
Getting through immediate illness without major complications is only the first hurdle though. Now I need to wait and see how my lungs do afterwards. Every infection has the potential to trigger rejection, which is part of the reason why infections are so dangerous for me. So far my lungs seem to be doing ok, but I need to keep an eye on them for the next few weeks and make sure nothing starts to deteriorate. I’m not sure exactly how long it will be until I’m in the clear, but my next transplant appointment is towards the end of May, so if my lung function looks good then I’ll assume everything is fine. Thank G-d, so far I’ve managed almost 6 years post-transplant without a single episode of rejection, which is remarkable! Hopefully I can continue that streak!!
 
Even though I was pretty much done with symptoms after 2 weeks, my transplant team said I was still presumed contagious for a full 21 days. Aside from making it difficult to fight infections, being immunosuppressed also makes it difficult to fully clear infections, so we tend to shed viruses for longer than most people. Which means I’ve been mostly quarantined for the last 3 weeks. The first 2 weeks didn’t really matter because I was too wiped out anyway, but I’ve really felt mostly fine for the last week. I was able to mask up and leave the house once for lab work and a vascular ultrasound (which thankfully showed that the blood clot in my arm has fully resolved! Woohoo!), but aside from that I’ve been stuck at home.
 
But today I was finally set free! I celebrated by… going to physical therapy. Ha. I’ve been dealing with off and on hip pain since transplant, but never quite got around to dealing with it. It’s typically only an issue if I walk for more than 15 minutes or so, and I have a pathetically sedentary lifestyle, so it doesn’t come up much. But a couple months ago I finally got a primary care doctor for the first time in years to look into some random shoulder pain, and I figured I may as well mention all my random aches and pains while I was at it. So she referred me to an orthopedist, who referred me for physical therapy, where I’m now working to strengthen my hips. I only went for 2 weeks though before catching Covid and being out of commission for the next 3 weeks. Hopefully now I can get back on track and get stronger, and maybe start doing something about making a change to that sedentary lifestyle!
 
And just to be extra celebratory, tomorrow I’m getting a tooth extracted! We found the first cavity of my entire life back in September, but it’s close to the nerve so they couldn’t drill it. It’s also in a wisdom tooth, so instead of going to the trouble of a root canal we’re just going to extract it. It took some time to get things squared away with my transplant team, and then to get an appointment with an oral surgeon, but eventually we scheduled an extraction appointment for December. Aaaand then Lump exploded, and the subsequent hospitalization, surgery, and other medical shenanigans promptly pushed all dental issues to the wayside. So now it’s finally time to address my tooth. After 46 years without a single significant dental issue, I am NOT excited for this. There’s also the fact that immunosuppression and steroids impede healing, so I have no clue how the recovery is going to go. Here’s hoping everything ends up going smoothly!
 
April has pretty much sucked, and the last few months in general have been A LOT. Hopefully this will be my last painful procedure for a long time!!

I'm so over this month

The last 2 weeks have been the ABSOLUTE WORST.
 
Last week, Cam died. And then, exactly one week later, we lost yet another member of the CF Discord server. Michael, aka scarz0ftime, was an actively involved long-time member. He got his double lung transplant about a year before I did, but after less than a year and a half he was already in chronic rejection. We knew that he was struggling and was working on getting listed for a second transplant, but he didn’t post publicly about how bad things had gotten. So it was a huge shock to find out that he died on Monday night. Scarz was a huge presence in the server, from welcoming newcomers, to offering advice and support, to joking around, to knitting people gifts and sending out random postcards to anyone who wanted one. He loved life, and fought long and hard and gave it his all, and he will truly be missed.
 
And then, because everything didn’t already suck enough: After avoiding it for 5 years, Katherine and I finally caught Covid. Which meant that the plans for my annual Pesach (Passover) trip to visit my long-time friend Anna and her family in Pittsburgh were abruptly canceled, and instead I had to scramble to make arrangements for spending the holiday at home. I am VERY fortunate to have amazing friends and an amazing Jewish community, so an army of people immediately sprang into action to get me food and make sure I have everything I need for the seders. I’m definitely not excited about being cooped up at home for the entirety of Pesach, but I am so grateful for all the support I’ve received!!
 
I also had to do all the Pesach cleaning while exhausted and short of breath. I couldn’t even pay someone to come do it for me, since I didn’t want to invite anyone in for a free Covid exposure. Fortunately thus far my symptoms haven’t been TOO terrible, but Katherine has been absolutely laid out by this miserable virus. Even though I seem to be handling it relatively well so far, my transplant team isn’t taking any chances and wants me to get treatment anyway. I can’t take Paxlovid since it interferes with my anti-rejection meds, so my only option is Remdesivir infusions. Insurance tried to deny it at least 3 times, but after 2 days of fighting they FINALLY approved it. A home infusion nurse is scheduled to come out today to put in an IV and run the first of 3 daily infusions. The hope is that they’ll get the IV in today and it’ll last through all 3 days, but my veins are in the habit of being pretty terrible, so I’m honestly very worried about how this will go. But there’s nothing I can do about it, so all I can do is pray and hope for the best.
 
So far the month of April has been just AWFUL. I’m sad, and sick, and utterly exhausted. I truly hope that the upcoming holiday of redemption will kick start a positive turn around.

Holiday season

I made it through the Jewish holidays! Having 4 major holidays in 4 weeks is intense, but it’s definitely much more enjoyable now that I’m able to get out and about for some of it. I went out for most of the meals, and even made it to shul a few times! My doctor didn’t think it was a good idea for me to be inside a crowded shul full of unmasked people, but I tried sitting outside on a porch and looking through a door that opened into the women’s section. That actually worked pretty well on the first day of Rosh Hashana, but I was foiled on the 2^nd day by jackhammering across the street which made it impossible to hear anything. It rained on Yom Kippur so I didn’t end up going to shul, but on Simchas Torah I was able to watch the dancing and hear the Torah reading from my porch seat. I even ran inside for a minute to dance VERY briefly before running back out to my anti-germ zone.
 
Sukkos was a little more difficult. On Sukkos we’re supposed to eat all our meals in a sukka, which is a temporary outdoor hut. One of the rules of the sukka is that the roof has to be made of plant matter, which unfortunately is typically prone to growing mold. My doctor was very concerned about the possibility of picking up a mold or fungal infection, so I was not able to sit inside the sukka. I compromised by going to the Adlers for a couple meals, because their sukka is open on one side against a glass wall looking into their dining room. So I sat in the dining room and could at least SEE the sukka through the wall and kind of feel like I was part of the festivities.
 
I guess sitting outside and looking in was kind of a theme across all of my holidays. Whether sitting outside shul or outside the sukka, unfortunately I’m often unable to fully participate in various activities and instead have to come up with compromises to protect my health. Being forced to separate myself definitely isn’t fun, but it’s still a vast improvement over the height of Covid when I couldn’t do ANYTHING. Unfortunately I’ll always have to live with some degree of separation regardless of Covid. Mold in the sukka will always be an issue, as will crowds and all their potential germs, since even a cold or flu could be deadly for me. It’s a difficult balancing act figuring out an acceptable risk level that protects my health while also allowing me to be part of my community and enjoy various activities and outings. Sometimes I get sick of all the restrictions and push the boundaries a little, but thankfully so far I’ve made it through those moments without catching anything. Figuring out how to navigate between being safe and living life is definitely still a work in progress.
 
As the weather cools off and there are fewer outdoor activities, and as cold and flu season ramps up, it will definitely be more difficult for me to safely get out and about. Winter definitely is not my best season (except for when it snows enough for me to snow sculpt of course!). Hopefully I’ll be able to find some relatively safe activities and social opportunities to keep me busy until spring!

Free again!

Hooray for (relative) freedom!

A few weeks ago I got Evusheld, an antibody injection for people who either can’t take or are unlikely to respond to the Covid vaccine. We already know that I didn’t produce antibodies in response to my vaccines and boosters, so Evusheld is an important tool to help keep me safe from Covid. My doctor has seen really good results so far, both in that transplant patients who get Evusheld are less likely to catch Covid, and that those who do catch it have much less severe illness. Between finally getting Evusheld, and the local Covid numbers going down, he actually felt comfortable loosening some of my Covid restrictions! I can once again be unmasked indoors with a few people at a time as long as they are vaccinated and will warn me if they have any symptoms of illness. He does still want me to avoid indoor crowds entirely and to wear a mask if I’m in a crowded space outdoors, but that’s pretty manageable. Regardless of Covid I need to avoid people with any signs of illness, since I’m highly susceptible to infections and even a simple cold could be devastating, so that and avoiding crowds are just standard post-transplant precautions. It’s so nice to mostly be back to my regular levels of paranoia now that I finally have some antibodies in my system!

On a less exciting note, my lungs continue to be a petri dish. After a month of nebulized antibiotics the pseudomonas was thankfully gone, but it was replaced with staph. I’m still not having major symptoms so we aren’t jumping to treat it yet, but it’s frustrating to keep having one infection after another. We know it’s all coming from my sinuses, but my ENT didn’t think another surgery would be particularly helpful. So instead we’re going to try Trikafta! Trikafta is the ground-breaking CF treatment that came out shortly after my transplant. I actually tried it briefly a couple years ago, but stopped because I was possibly having side effects and it wasn’t clear whether it would even help my sinuses. But now there is more research showing that it DOES help the sinuses, so we’re going to try again and see if I can tolerate it, possibly on a partial dose.

Before starting though, I’m getting a sweat test. One of the weird things that happens when you have CF is that your sweat is extra salty, and a sweat test has been standard to diagnose CF for decades. So why do I need one now? Trikafta addresses CF on a cellular level, and even corrects the salt levels in the sweat. Since I might not be on a full dose, we need a way to check if the partial dose is working. If I get a baseline sweat test now, we can then compare my salt levels on Trikafta to see how much it changes. This won’t be necessary if I end up tolerating the full dose, but could be helpful if I need to take a modified dose. The funny thing is that I have to go to the children’s hospital to get it done, since it’s not typical for adults to get this kind of diagnostic testing. That should be interesting!

One other issue is that I’ve been having some on and off chest congestion over the last couple months and have been having trouble coughing it out. My doctor heard some stuff rattling around in my lungs during my last appointment, and thinks it might be time for another bronchoscopy to open up my airways. So that’s Monday’s adventure. Thankfully it’s been nearly 10 months since my last bronch, which is a record for me! Hopefully it’ll go smoothly and I’ll feel better afterwards.

That’s the latest medical shenanigans around here. Thankfully nothing too dramatic this time!

Goodbye freedom

Well, freedom was fun while it lasted.
 
As local Covid cases continue to increase, so do the precautions I need to take. I already try to avoid crowds, but now it’s even more important since it seems like everyone and their brother has Covid. I also need to be careful about who I’m around, and must be masked when sharing indoor space with anyone, which very much limits my ability to join people for Shabbos and holiday meals. I knew that my low Covid cases window of opportunity wouldn’t last forever, but I did hope it would last a little longer.
 
On the plus side, I’m finally scheduled to get Evusheld next week! Evusheld is a Covid antibody treatment for high-risk individuals who are unlikely to respond adequately to the Covid vaccine. They’ve wanted me to get it for months, but supplies are limited, so Penn has been distributing it to qualifying patients via lottery system. I’m looking forward to finally having more protection and maybe being able to ease up on some restrictions!
 
Another plus is that at least this Covid surge is during the spring/summer so outdoor activities are an option. The winter surge was terrible because there was nothing to do but stay cooped up in the house all day long. This still sucks, but isn’t quite as miserable. Hopefully things will peak and ease off soon so I can return to freedom!

Freedom!

Our first time eating in a restaurant in over 2 years! We took an impromptu trip to Lakewood and of course we had to go to Esty's Besty's Vegetarian Eatery! We used to go all the time when they were in Cherry Hill, and Esther was so surprised and happy to see us. It was SO wonderful to get out into the world and see friends again. And the delicious food was an extra bonus!

The light at the end of the tunnel

I haven’t written because it kinda felt like every day was the same. The pain is improving, but I still have stitches and I’m still uncomfortable and I’ve still been on IV antibiotics. The one thing that changed is last week I got my drain out. It hurt but at least it was quick, and that’s one less annoying thing sticking out of my body.
 
But then! Today I saw my transplant doctor. He’s pleased with my recovery and said that the samples they took during surgery actually didn’t grow any pseudomonas, which is a good sign that hopefully the Amikacin will be able to fully eradicate the infection. And then he gave me the best news I’ve heard in a LONG time. He said that the Covid rate in my area is currently low enough that I can finally loosen up my lockdown and go back to regular post-transplant precautions! For the last 2 years my socializing has been very limited and almost exclusively outdoors. Sharing meals has been extremely rare as any unmasked socializing had to be outside at a social distance. But now! For the first time in 2 years, as long as everyone (excluding young children) is vaccinated, I can finally be unmasked indoors and share a meal together! With the caveats that I still can’t be around crowds, or anyone showing any symptoms of anything, or people who have recently been in a crowded place with a high risk of exposure to illness. And of course I’ll still wear a mask in public. But those are basically the restrictions I followed post-transplant anyway, since for me ANY infection has the potential to cause serious problems. Being able to finally step inside someone’s house unmasked is a HUGE improvement!
 
It’s kind of surreal, and I’m actually kind of anxious about it! I’ve worked so hard to stay safe and somehow managed not to catch Covid this whole time, so it’s very strange and a little scary to think about loosening up on Covid protections. At the same time, I’ve been pretty depressed lately, and I think a lot of it has to do with Covid. It feels like Covid sucked all the fun parts out of life and all I had left was endless medical complications. I wasn’t happy even before surgery, and having a painful procedure and lengthy recovery thrown on top was just too much. Finding out that I can start seeing friends again finally added a little light back into my life, and hopefully will help pull me out of the depressive funk I’ve been slogging through.
 
Today I finished my last dose of Amikacin. I’m keeping the PICC line until Monday to get my annual infusion of Reclast to treat osteopenia, and then hopefully after nearly 3 months I’ll finally get that out. Next Wednesday I’ll get my stiches out and will hopefully be more comfortable. And then the following day is Purim! Hopefully this will be the end of medical drama and the beginning of more fun holidays and celebrations with family and friends!!

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!

Struggling

I just realized it’s been almost 3 months since I wrote a health update. I’ve *thought* about writing, and really felt like I *should* post something, but I just haven’t been able to muster up the mental energy to actually do it. Don’t let the social media break fool you into thinking that my life is quiet, however. It’s almost always a safe bet that I have some sort of stress and drama going on.
 
I once came across a little picture book called All My Friends Are Dead, which was a good fit for my often dark and morbid sense of humor. I’ve been thinking of that book a lot lately, because my life is starting to feel that way. This year has been pretty brutal for the CF server on Discord. In May we lost Jacob, less than 4 months after his double lung transplant, at just 25 years old. And then, a couple weeks ago, we lost Eve. Eve got her transplant in 2019 at only 13 years old. She struggled with rejection pretty quickly, and was waiting for a second transplant, but sadly she couldn’t hold on any longer. She was just 15 years old.
 
In the midst of all this death and tragedy, I also had my own health struggles. In June I started running a low grade fever, culminating in a sudden spike to 102.4. You don’t play around with any sign of infection when you’re immunosuppressed, particularly fevers, so a fever that high sent me straight to the ER. I followed almost exactly the same fever pattern last summer, and sure enough I once again had a pseudomonas infection brewing in my lungs. You might remember from last year that my pseudomonas has basically been supercharged from decades of antibiotics and is now resistant to almost everything. There’s now only 1 IV antibiotic that we can use without putting my hearing and/or kidneys at risk. Fortunately, that antibiotic can now be administered at home, so I only had to spend a few days in the hospital instead of the full 2 weeks. Unfortunately, I had to give myself a 3-hour infusion every 8 hours, which was divided into 2 separate 1.5 hour doses, so I didn’t get much in the way of sleep that whole time.
 
It’s very frustrating to keep battling these infections, especially since I know where they’re coming from yet can’t do much about it. I already had surgery last summer to try to clear out my sinuses and reduce the infections, but it doesn’t seem to be helping. I’m now back on a nebulized antibiotic every other month to try to keep things under control, and probably will be for life, since I ended up in the hospital when I tried stopping for a few months. My current medical routine is still WAY better than my pre-transplant life, but I can’t help wishing things would be just a little easier. Of course, then I feel bad about complaining, since I know many people struggle so much more than I do. Survivor’s guilt sucks.
 
And then of course there’s Covid. While it seems that the rest of the world is making their way back to business as usual, I remain mostly locked down. I remain at high risk for severe, life-threatening illness, as unfortunately my anti-rejection meds prevented me from producing Covid antibodies. This wasn’t surprising, but was still disappointing. My doctor does believe, however, that the vaccine produces other immune responses that don’t show up on testing, as vaccinated transplant recipients aren’t getting quite as severely ill if they catch Covid. There’s also evidence that some immunosuppressed people who didn’t respond to the first 2 shots DO respond to a 3^rd dose, so I got my 3^rd shot just over a week ago. Here’s hoping!!
 
Overall I’ve had a lot weighing me down over the last few months. I wasn’t exactly a paragon of emotional stability before that either, so I really didn’t need more stress and sadness in my life. With Covid continuing to hang over my head, and the annual danger of cold and flu season coming up, things aren’t feeling particularly hopefully right now. I am physically and mentally exhausted.
 
I don’t look at Facebook very much these days, so please don’t be offended if you share something important and I don’t react. Chances are I didn’t see it. I’ve also been even more terrible than usual at responding to texts and phone calls, as I tend to crawl into an antisocial cave when I’m stressed and unhappy, so please don’t take it personally. I really appreciate the efforts of those of you who continue reaching out to me despite this! Thank you for putting up with me!

2nd lungiversary

A few weeks ago I let an important milestone pass with limited fanfare. On May 12^th, I celebrated my second lungiversary.
 
From the outside it may seem like my lungiversary would be a purely celebratory day. And I definitely did celebrate! I made lung-shaped cookies and brought them to my transplant and CF teams, to the nurses on my usual hospital unit and the post-transplant unit, and to my surgeon. Katherine and I also got together with my mom and Frank for a celebratory dinner. My mom decorated the back deck for the occasion, and even got me a gift! We already have a well established tradition to get me a little stuffed animal every time I have a bronchoscopy (aka The Bronchoscopy Collection), so my mom decided she wanted to start a new tradition and get me a gemstone animal for each lungiversary. She began my new collection with a beautiful lapis lazuli swan, which hopefully will only be the first of many!
 
At the same time, I am keenly aware of the fact that on the day I celebrate life, there is another family somewhere out there who is mourning the loss of a loved one far too soon. The fact that someone else had to die before I could be saved is a sobering reality that I live with every day. In Jewish tradition, on the anniversary of a loved one’s death, mourners light a yartzeit candle which burns for a full day. This year I started the tradition of lighting a yartzeit candle on my lungiversary to honor my donor and their family. It’s a small gesture, but hopefully it will help me keep their loss in my mind even in the midst of celebration.
 
In addition to this, I lost yet another friend to CF a week before my lungiversary. My friend Jacob had a much-needed lung transplant in January, but unfortunately it didn’t go well, and he died less than 4 months later. It’s yet another reminder of the risks of lung transplant, and the fragility of post-transplant life. I already struggle with survivor’s guilt, as so many of my post-transplant friends are either already gone or are struggling with significant health issues. Losing Jacob before he even had a chance to enjoy his transplant is a bitter pill to swallow.
 
Under the best of circumstances, my lungiversary involves complex and conflicting emotions. These were not the best of circumstances, and once you add Covid to the mix, I really wasn’t up for planning any big celebrations. I started off the day feeling very somber as I lit the yartzeit candle at midnight, which is right around when I got the call that they possibly had lungs for me. My mood picked up during the day when I delivered the cookies, as everyone at the hospital was thrilled to see how well I’m doing. And a quiet celebration with my family was the perfect way to end the day.
 
Being alive and being able to breathe is a tremendous gift, and I am so extremely grateful for it. Hopefully next year the world will be a less dangerous place, and we’ll be able to celebrate the next milestone together!

Covid shot #1!

I got my 1st Covid shot! Thank you Frank for helping me get on the waiting list at Rite Aid so I don't have to wait another 1-2 months for an appointment! They had some no shows today and needed to use the doses before they expired, so I was able to jump in for a last minute appointment. The perks of being disabled and having an open schedule!

Getting vaccinated won't actually change how I live my life, since we have no clue how effective the vaccine will even be for me. Vaccines work by creating an immune response, and that's something my body doesn't do well since I'm immunosuppressed. I'll still need to be extremely cautious since it's likely I'll remain very susceptible to the virus. My vaccine definitely won't be 95% effective, but hopefully it'll do SOMETHING, and something is better than nothing.

What I really need is for Katherine to get vaccinated, but unfortunately living with a high risk person is not a qualifying condition here. She's stuck at the bottom of the list with all the other young, healthy people.

But even with all the caveats, this is very good and exciting news! I'm very grateful, and I'm hopeful that we're finally inching our way closer to normalcy!

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!!!

New year, new me!

I think I haven’t gotten a haircut for almost 2 years. I did go to a salon in September 2019 to get it bleached and dyed, but I’m pretty sure we didn’t cut it then, which means my last haircut was in February 2019 shortly before my big 40^th birthday party. After transplant I lost a LOT of hair, which actually isn’t unusual, but it was still pretty alarming to see it coming out by the handful. My doctor reassured me that it would stop within a few months (for those who know Dr. Courtwright, his exact words were “Don’t worry, you won’t end up looking like me”), and it did, but my hair was visibly thinner. Between that and the abuse I put it through with bleaching and dying, my hair has been looking pretty scraggly and gross, and I’ve been itching to get rid of it.
 
Meanwhile, Katherine has been cutting her own hair for decades, and also used to cut her friends’ hair. She’s been offering to cut my hair for AGES. I’ve been super restless lately and REALLY wanted to chop off my hair, but I also don’t feel comfortable allowing anyone near me right now, particularly since I’ve somehow managed to have 2 (low level) Covid exposures this month. So… Katherine finally got her wish! Introducing the new me!

And the verdict is...

It’s official: Pseudomonas REALLY loves me.
 
A few weeks ago, we got the results back from the sample they took during my bronch. Unfortunately, even after all that treatment in August, they STILL found Pseudomonas in my lungs. It’s unclear whether we never fully eradicated it or if my sinuses just reinfected my lungs that quickly, but either way it was very upsetting. I literally screamed with frustration after hanging up the phone. Damn you Pseudomonas!!
 
The new plan is to put me back on a nebulized antibiotic, specifically Tobramycin. Tobramycin is the one that gave me tinnitus, but taking it via nebulizer is far less risky than IVs. I haven’t done Tobra nebs in years because over time my airways became increasingly reactive, and I started having significant asthmatic symptoms every time I took it. Hopefully my new lungs will tolerate it better, especially since my clinic’s protocol is to only give post-transplant patients a half dose. I’m also taking an albuterol nebulizer beforehand to help open my airways and counteract any negative reactions. The downside of this is that it’s been so long since I took albuterol that I’ve completely lost my tolerance for it. For years I did albuterol nebs at least twice a day, so they didn’t really affect me.  Yesterday I took my first albuterol neb in months, and boy did it mess with me. My heart was racing, my hands were shaking, and for hours afterwards I felt shaky and worn out and had a headache. I really hope my body gets reacclimated to albuterol soon!
 
I was pretty freaked out when I got the bronch results, but I’m feeling calmer after hearing from some other post-transplant CFers who have dealt with Pseudomonas without it impacting their lung function. My team also wasn’t alarmed and reassured me that this is not uncommon, and that I will likely just keep going on and off Tobra nebs as needed. I’m not excited about getting back into a twice a day neb routine after having a nice little break for the last year or so, but that’s definitely easier than IV antibiotics. I also feel a little spoiled complaining about a few nebs after spending most of my life doing multiple nebulizers 2-4 times a day on top of airway clearance. My current nebulizer routine is still SO much lighter than it was pre-transplant!
 
Unfortunately, I’ve still been struggling with fatigue and low mood. We decided a couple weeks ago to discontinue the Trikafta entirely, since it’s unclear how much benefit I’m getting and it could be worsening those symptoms. I do think my mood has improved a bit, though I’m not sure about the fatigue. We recently discussed the fact that my iron levels have been a bit low, which could be contributing to my fatigue. Unfortunately, oral iron supplements can slow down the gut, which is already a problem for me due to CF digestive issues and gastroparesis (aka delayed gastric emptying). Due to this, I’ll have to go in for iron infusions once a week for 3 weeks. During that time I’m also scheduled to get an infusion of Reclast to improve my bone density, which has been damaged by years of steroid use. Apparently infusions are the theme for December! I’m a little worried about how my terrible veins will handle all these IVs and infusions, since I no longer have a port and I doubt they’ll give me a PICC line for just 4 infusions. Hopefully it won’t be too bad, and HOPEFULLY treating the anemia will be the fix I need to get my energy back!
 
I’m super not excited about heading into cold and flu plus Covid-Part-2 season. I guess it won’t really make much difference since I’m already isolating and being super careful, but it’s never fun knowing there are even more germs floating around trying to kill me. It’s also even less fun hunkering down and trying not to die when it’s all cold and dark and depressing outside. I remember how exhausting cold and flu season was last year, and how much I was looking forward to spring, only to get slammed with Covid instead. This year is worse since I’ve already been on varying degrees of lockdown for a full year now. Hopefully all the promising news about the Covid vaccine will come to fruition, and maybe I’ll FINALLY get released sometime this coming spring or summer!
 
That’s the latest in my life of medical shenanigans. Hopefully I’ll have a more uplifting update sometime soon!

One foot in front of the other

I’m tired.

Since getting home from the hospital at the end of August, I’ve been very fatigued and kind of depressed. I wasn’t exactly full of joy and energy before then, but things seemed to get markedly worse. After about a month I realized that this coincided with starting Trikafta, so I reached out to my doctor. Turns out these can be side effects of Trikafta, so we halved my dose. I felt less depressed the following week, but have still been very fatigued. My doctor said this could be due to the CMV flare up over the summer, and that unfortunately it can take a while to recover.

Part of the problem is that it’s very difficult to tease out which issues are medical symptoms, and which are related to mental health. Transplant is a VERY intense experience, and depression and anxiety after transplant are not uncommon. I still have lingering trauma from what I went through before and during the transplant process. In addition, life after transplant is fragile and uncertain, a reality that is very stressful to live with. And as if that isn’t difficult enough, I also end up feeling guilty about being depressed and anxious! I feel like I should be perpetually full of joy and gratitude for this precious gift of life and relative health, and that I have a responsibility to live my best life for my donor as well as for myself. So I end up not only feeling depressed and anxious, but feeling bad about feeling depressed and anxious. It’s super fun.

Now take all that, and throw a life threatening and confining global pandemic on top of it. Just what I needed: another threat to add to my already long list of fears! How am I supposed to distract myself from those fears and live my best life when I can barely leave the house? I’m dealing with the same stresses and fears and struggles as everyone else, ON TOP of my already elevated baseline of stresses and fears and struggles. This makes it REALLY hard to figure out the cause of various symptoms. Is the fatigue a symptom of depression, or a medical issue? Have I been depressed because of medication, or because of the world at large? What is going on???

Despite all this, overall I’ve still been doing really well medically. I had a follow up appointment on Friday and once again my lung function was an amazing 92%! My chest CT scan looked good and showed that the pneumonia from August has cleared up completely. Tomorrow I have a bronchoscopy, so we’ll see how my airways look and get a sputum sample to check for infections. Here’s hoping Pseudomonas finally got the message and moved out!

I’m just trying to put one foot in front of the other and keep getting through this 2020 life. Hopefully it’ll get easier soon!

Looking back

Rosh Hashana was a week ago, so tis’ the season to take an accounting of the previous year! One year ago, my intense joy and gratitude for being alive after an intense life or death battle was beginning to be tempered by the difficulty of dealing with various post-transplant complications. Transplant complications unfortunately became a bit of a theme for the year, though thankfully nothing TOO severe. Nonetheless, life was already pretty stressful even before Covid hit. But I definitely didn’t expect to go into my second Rosh Hashana after transplant overwhelmed and exhausted from a far more subtle yet just as real months-long struggle for survival.

This has been my first year of post-transplant life. It has been marked by incredibly good progress, including a terrific level of lung function and no hint of rejection. But it definitely hasn’t been smooth sailing. I became diabetic due to my medications and had to learn how to manage my blood sugar with insulin. I spent last September through November almost incapacitated with terrible joint pain caused by one of my medications. I’ve been getting bronchoscopies every 1-2 months because my airways keep closing up. I’ve had repeated lung infections, which led to weeks of IV antibiotics, and ultimately resulted in pneumonia and a 2 and a half week hospitalization.

I also have CMV. CMV (Cytomegalovirus) is a common virus that many people carry asymptomatically. One of the reasons my transplant was considered high risk is because my donor had CMV, while I did not. Things were so dire before transplant that I didn’t consider turning down these lungs for even a second, but this means that we knowingly put a new virus into an immunocompromised person. Due to this I was on antiviral medication for the first year after transplant. After a year without any signs of CMV we tried stopping the antiviral, but a few months later CMV showed up in my bloodwork. I’m now back on the antiviral and likely will be for life. This isn’t a big deal, but a donor-recipient mismatch for CMV increases the risk for chronic rejection, as does the fact that I keep battling Pseudomonas infections.

We also don’t entirely know the current status of my Pseudomonas infection. I haven’t noticed any overt symptoms, but I also didn’t notice that I was developing pneumonia until I started running a fever. I’m scheduled for a follow up CT scan in 3 weeks to make sure the pneumonia is gone and that my lungs look ok. A week later I’ll have a bronchoscopy and will probably have my airways dilated once again. They’ll also take a sputum sample, which will show whether or not I still have Pseudomonas in my lungs. I kind of have an undercurrent of anxiety about Pseudomonas possibly lingering in my lungs, since it very much snuck up on me last time. I won’t really believe it’s gone until we get clear test results.

Of course, even if it is gone, it will never be GONE gone. There’s no way to clear out every nook and cranny of my sinuses, which are still full of infections and sticky CF mucus. Hopefully that’s improved now that I’m taking Trikafta, but when you have CF it’s almost impossible to fully eradicate infections like Pseudomonas. The question is whether we can improve my sinuses enough to keep them from repeatedly infecting my new lungs and putting them at risk. Only time will tell.

Pandemic life hasn’t exactly been kind to me. On the one hand, in some ways I had less to lose than a lot of people. My world was already pretty small, and I was already abiding by many of the restrictions that were new and surprising for everyone else. On the other hand, my life is very much in danger from this virus, which means I need to be even more careful than most people, and I’ve known from the start that I’ll need to do it for longer. On top of that, I’m keenly aware of the fact that I’m living on borrowed time and have no clue when the clock will run out. Most people anticipate many full years after the pandemic during which they can make up for the time and experiences they’re missing now. I, unfortunately, don’t have their confidence. It’s extremely hard to watch my precious post-transplant time being wasted by the pandemic. I have these wonderful new lungs, I have this precious gift of extra, unexpected life – but right now I can’t do anything with them, and I have no guarantees about how much time I’ll have left to enjoy them once the pandemic is over. It’s extremely frustrating.

I’m very, very good at anticipating and stressing about all the things that could possibly go wrong. This is particularly unfortunate after transplant, because it’s a LONG list! With Covid, I have fewer opportunities to distract myself with joyous life experiences, and more space to sit in my fears. It honestly hasn’t been great.

5780 has been an unexpectedly difficult and overwhelming year on multiple levels. Hopefully things will turn around in 5781!

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!!

Here Comes the Sun

 I just heard Hear Comes the Sun over the hospital intercom! That means a Covid patient was just discharged! First time during this hospitalization!

Round... wait, what round am I up to?

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!

Small victories

Here's a sweet tidbit: Every time HUP discharges a Covid patient, they play a snippet of Here Comes the Sun over the intercom as they're walked out. So far I've heard it twice!