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!