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!

No news is (mostly) good news!

It’s been quite a while since I shared a health update. This time around, no news is mostly good news!
 
Things have actually been relatively calm in recent months. I had a bronch and a sweat test in July, but aside from those and bloodwork every few weeks I’ve actually managed to avoid any other procedures. I haven’t even had any doctor’s appointments! Katherine and I have been taking advantage of the calm to go on outings and little day trips. We went out to a free concert and fireworks for the 4^th of July, visited the beautiful Chinese Lantern Festival, drove to Edison for a cat expo, road a scenic railroad in Delaware, went to Wildwood to check out a tattoo convention, and spent an afternoon at the art museum. We’ve had a pretty busy summer, and still have more outings planned! Definitely a nice change from medical drama!!
 
There is one big thing going on though: Trikafta. I started taking it over a month ago, and it hasn’t gone entirely smoothly. When I first tried it a couple years ago I ended up stopping because it seemed to be making me fatigued and depressed. This time we tried increasing the dose slowly to give me time to adjust, and while I did ok with the first dosage, as soon as I moved up to the next level I started struggling with fatigue and depression again. Right now I’m back to the lowest dose and planning to stay here for a while to really give my body time to adjust before trying to go up again. I don’t want to waste the rest of the good weather and spend the Jewish holiday season being exhausted and depressed, so I won’t be changing the dose until the end of October at the earliest. I do think I’m still having some side effects, such as insomnia and fatigue, which is difficult but definitely much more manageable than what I experienced at the higher dose. It’s really frustrating that there’s this amazing medicine that could nearly “cure” my remaining CF symptoms, but I may not be able to benefit from it due to side effects. I have heard though that for some people the side effects fade after a month or 2, so I’m hoping that eventually I’ll be able to sloooowly work my way up to a full dose. Here’s hoping!
 
This month will be a little more medical, as I have appointments coming up with my transplant team and my endocrinologist. I also have a dexa scan scheduled to check my bone density, since my bones have been compromised by years of steroids. But aside from that I plan to keep getting out and about and enjoying myself as much as I can!

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!

Lungiversary party!

I had a terrific time at my 3rd lungiversary party! I had to keep the guest list small to reduce the risk of infection, but it was so wonderful to get together with family and friends to mark this special milestone! I am so grateful to Hashem for blessing me with a successful transplant and the gift of these bonus years!

3rd lungiversary!

Thursday was my 3^rd lungiversary!
 
I’m still figuring out my lungiversary traditions, but I have a couple. One is that I start the day by lighting a memorial candle for my donor. I am keenly aware of the fact that my life was saved when someone else lost theirs, and that my day of celebration is another family’s day of loss.  I hope that my donor is at peace and that their family can take some comfort from knowing that they saved lives.
 
Another tradition is that I baked and decorated a bunch of lung-shaped cookies for my doctors and nurses. I had an appointment on Wednesday, so while I was in clinic I delivered cookies to my transplant team, my CF team, and my surgeon. I then headed over to the hospital with more cookies for the nurses on the unit I spent a LOT of time on before transplant. There happened to be a bunch of nurses I know working that shift, and they were SO happy to see how well I’m doing. The hospital staff typically only see people when they aren’t doing well, so they really appreciated seeing me looking great 3 years later!
 
On Thursday we celebrated by actually getting out and living life! First we had a wonderful visit with my grandparents, who I haven’t seen since before transplant thanks to Covid. And then we went to Edison for a MASSIVE gem, mineral, and fossil show. We spent hours walking around looking at all the amazing specimens, and still didn’t even cover half of the exhibits. Afterwards we took advantage of the local kosher food options to hit up a pizza place and Dunkin Donuts before coming home. It was the most activity I’ve had in one day and the farthest I’ve traveled from home in a LONG time! It was great to get out and spend the day making memories, which seemed like a very appropriate way to spend my lungiversary.
 
Tomorrow I’m wrapping up the lungiversay celebrations with a small party. To keep it safe I unfortunately can’t invite everyone I would like, but my doctor said a small, outdoor party would be safe enough. Fortunately my building has some picnic tables under a gazebo out back, so we can keep the party going even if the weather doesn’t cooperate. I’m looking forward to getting together with a small group of family and friends to continue celebrating this exciting milestone!

The medically low-key life

Things have been about as medically quiet as they get for me. That doesn’t mean no complications, but it does mean nothing particularly dire. One frustrating thing is that I’ve had continuous lung infections since finishing IV antibiotics. In March I cultured staph, but fortunately it was an easily treatable one that was resolved with oral antibiotics. Then in April I cultured my old nemesis pseudomonas. I haven’t had much in the way of symptoms however, so we haven’t jumped into any drastic treatments yet. I already do a nebulized antibiotic on a 1 month on, 1 month off schedule, and April was my off month, so as long as I remain mostly symptom free we’ll just see if it clears up by the end of May. I’m also having an appointment with my ENT to see if there’s anything else we can do with my miserable sinuses to keep the infections from dripping down into my lungs.
 
The main symptom I’ve had is fatigue, but it’s hard to tell how much of that is from the infection and how much is just my life. I’ve struggled with poor sleep for decades, but I definitely feel like it got worse after transplant, so that obviously contributes to fatigue. I think I’ve heard that insomnia and fatigue aren’t uncommon after transplant, so it could just be transplant life. And I’m sure battling a pseudomonas infection doesn’t help. All I know is that I’ve been VERY tired lately, which makes it really difficult to get anything done and kinda sucks the life out of me. Here’s hoping that improves along with the pseudomonas infection.
 
I also had my first post-transplant dermatology appointment. You’re supposed to have one every year after transplant, but due to Covid we pushed off most non-essential appointments. Penn now has a special transplant dermatology program though, and they’re good about making sure we all get in to see them. I knew that transplant recipients are at higher risk for all kinds of cancers, but I didn’t realize that the risk of skin cancers in particular is ridiculously high. Thankfully my skin looked good this time, but the doctor said that 3-5 years after transplant is when they typically start seeing skin cancers. And guess whose 3 year lungiversary is this week?? So that’s another worry to add to my long list of fears. I’ll definitely be more cautious about covering up and using sunscreen!
 
On the non-medical front, we unfortunately have some sad news. After having a bad fall last summer and then struggling for months with one medical issue after the next, Katherine’s mother passed away last month. It was a strange mix of unexpected and expected: unexpected, because before the fall she was doing fine, and expected, because she declined for months before finally being sent home on hospice. Things were pretty awful at the end, and it was a mercy when she finally passed. It’s been difficult, but Katherine is holding up ok, and we all hope her mother is finally at peace.
 
On a brighter note, I’ve really been appreciating being able to get out and socialize a bit instead of being on full Covid lockdown. I went out for half of the holiday meals on Pesach, which was AMAZING and made the holiday SO much more enjoyable. I’ve also been going out for some Shabbos meals. And in an effort to get some exercise, I started taking lessons with my friend Abrielle Fuerst, who teaches martial arts professionally. So that’s guaranteed once a week that I get out of the house and see a friend, and I get to learn how to be a ninja on top of it! I am playing with NUNCHUCKS, people! Watch out!