Another lungiversary

May 12th was my 7 year lungiversary, and as always, it came with a lot of feelings.

 
First of all, 7 years! I don’t think I ever imagined getting this much time out of my transplant, and still going strong! Not to mention the fact that I never expected to live as long as I have before I even got my transplant. It’s pretty mind boggling to me that I’m still here. I’m definitely an elder in the CF community, and I’m so grateful that I’ve somehow managed to make it this far!
 
On the other hand, I always start my lungiversary by lighting a memorial candle in honor of my donor. The candle burns for the entire day and reminds me that someone else lost their life on the day that I regained mine. I sent a letter to my donor’s family years ago through the Gift of Life program, but I never received a response. Even as I celebrate my own survival, I always remember their loss, and I hope that the years have been gentle to them.
 
Then there’s the fact that this is the 3rd year in a row that my lungiversary came shortly after losing yet another friend. The CF discord server pretty much hates the month of April now, because over the last 3 years we’ve lost 4 friends during the first 2 weeks of April. And those are only some of the friends we’ve lost along the way. Most of them were post-transplant and were lucky if they survived 3 years. Some were very young. It’s hard to be fully joyful on my lungiverary when I feel the weight of so many losses and wonder why it is that I’m still here while they are gone.
 
Plus, it’s not exactly like the last couple years have been stellar for me medically. I’m very fortunate that thus far none of my post-transplant complications have been life threatening, but some of them have still been EXTREMELY unpleasant. This winter was basically hell, and I’m still not 100% recovered. I’ve also been dealing with some far less intense but still annoying medical issues, specifically a seemingly endless series of infusions. About 1-2 months ago we decided that I needed a few iron infusions as well as immunoglobulin (aka IVIG). Thankfully, we were able to arrange for them all to be done at home, which is obviously WAY more convenient than going to the HUP infusion suite in Philly. So over the last 6 weeks, I’ve had 5 infusions. I did a once weekly iron infusion for 3 weeks, as well as 2 IVIG infusions just over a month apart. Fortunately the iron infusions are done for now, but the IVIG is currently scheduled for once every 6 weeks until my levels stabilize – if they stabilize. Some people just get regular IVIG infusions indefinitely, and there’s really no way to know how things will go. I’ll definitely take an occasional infusion over the hellish IV schedule I was on from November to March, but it still isn’t fun.
 
But despite everything – or maybe because of it? – we still celebrated. On the day itself, Katherine and I picked up a delicious cake from a local bakery and invited a friend over to enjoy it with us. And that weekend we went out with my mom and Frank to a very nice restaurant for a delicious celebratory dinner, complete with being surprised by waiters singing a congratulatory song and a sparkler in my dessert. It was a lovely evening, and I am so lucky to have such a wonderful partner and family!
 
Happy 7^th lungiversary to me. G-d willing things will continue settling down as time goes on, and hopefully by the time lungiversary #8 rolls around I’ll be able to celebrate more fully after having a great year!

Lungiversary

Today is my 6^th lungiversary. All day I’ve been looking at pictures and reviewing where I was at any given time. First waiting in my hospital room, then being brought down to pre-op, then waiting in pre-op, and then, finally, being brought into surgery. Right now I was in the thick of surgery, and Katherine and my mom had already been anxiously waiting for hours and knew they still had hours to go. It’s mind boggling to think of all we went through, and how wildly different my life is now.
 
My transplant anniversary always comes with a weird mix of emotions. On the one hand, it’s obviously a celebratory day, as the transplant very literally saved my life. On the other hand, I always light a Yartzeit candle in memory of my donor, and have their family in my thoughts. I sent a letter to my donor’s family in the year after my transplant, but I never got a response. I always wonder how they are on this day, and what my donor’s life was like. It’s very strange to be celebrating my survival while mourning my unknown donor’s passing.
 
This year has been extra difficult, because I’ve also been thinking about Cam and Scarz. It hasn’t even been a month and a half since they passed. Both of them were also post-transplant, and I can’t help wondering why I have been so fortunate to be blessed with a mostly-successful transplant while they were not. And they are just the latest of a long list of friends I have lost to CF and/or transplant over the years. Survivor’s guilt is something I always struggle with to varying degrees, and it weighs heavily on me today.
 
But on the other hand, 6 years! 6 years that I definitely would not have seen without the transplant. 6 years of life experiences and time with my loved ones. I am so grateful for this extra time, and for not having any life-threatening complications. Some aspects of this day are heavy, but I also want to recognize the miracle of my life with joy.
 
We were supposed to go out for a joint lungiversary and Mother’s Day dinner with my mom and Frank last night, but unfortunately my mom came down with a bad respiratory infection over the weekend. So not only is she not up to going anywhere, but I also can’t go anywhere near her until she’s 100% germ free. I told her it’s ok though, we’ll just have to extend the celebration until she’s better and we can make it up. Forget about lungiversary day, this is now officially lungiversary month! Katherine and I also picked up a cake today and invited our good friends and neighbors Rivka Sara and Eli to join us for a little celebratory dessert. It was a much more low-key celebration than last year, but we definitely still recognized this special occasion.
 
I definitely haven’t taken these last 6 years for granted. I recognize how fragile post-transplant life can be, and even though I’ve had my struggles, I am so thankful that overall my transplant has been so successful. And I look forward to celebrating many more lungiversaries in the future!

Happy 5th Lungiversary to me!

5 years!!!

Sunday May 12th was my 5th lungiversary! 5 years is statistically a Big Deal, as around half of lung transplant recipients don't survive 5 years after transplant. To not only survive but be doing really well and have had NO rejection during those 5 years is amazing!

We knew we had to celebrate this incredible milestone, but we thought it would be rude to host a party on Mother's Day (even though I actually got my transplant on Mother's Day!). We pushed the party off for a week, and Sunday was the day! We started off with a bagel brunch in my mom's backyard, before going to Philly for a sightseeing trolley tour! I had a great time spending the day celebrating with family and friends, and really appreciate all the people who came out to recognize this special occasion!

I also was surprised on Shabbos by several friends from my synagogue who sponsored kiddush in honor of my lungiversay! They even got me a cake for the occasion! Between kiddush on Saturday and the party on Sunday, it was a very celebratory weekend!

I am so grateful not only for being here to celebrate 5 years post-transplant, but for having so many people who love me and share in my joy! Here's to many more lungiversary celebrations!

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!