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!

Cavity free is the way to be!

Thank G-d the tooth extraction went really well! I was anxious going in since I’ve never had any significant dental work done before, but it ended up being so quick and easy. I barely felt anything and he popped the tooth out so fast I couldn’t believe it! And then much to my surprise I hardly had any pain even after the anesthetic wore off! The oral surgeon gave me an additional treatment called Platelet-rich fibrin, or PRF, which helps with wound healing and reduces the risk of dry socket. He drew some of my blood before the extraction and spun it in a centrifuge to separate out the super-healing parts. After the extraction he inserted this material into the hole before stitching it up. This additional procedure was optional, but since my wound healing is compromised by immunosuppression and diabetes, I wanted anything that could help. I don’t know if it was because of the PRF, but my recovery has gone really well and been almost completely pain-free. What a relief!

Unfortunately, Medicare is notorious for not offering dental coverage. I do have some coverage due to having a Medicare Advantage plan, but right now they are denying the PRF (which wasn’t cheap) and the extraction. I had to do it regardless, since the cavity was too close to the nerve to drill and I couldn’t risk it getting infected. I was also willing to pay extra if necessary for the PRF to reduce the risk of complications. But between the dental bill and my ambulance bill from January, this is turning into a medically expensive year!

I have a few extra appointments coming up soon in addition to my usual list. I’ve been on blood thinners for over 3 months now since my PICC-induced blood clot in January. A recent ultrasound showed that the clot has fully resolved, but since this is the 2nd time I’ve had a blood clot, my transplant doctor doesn’t want to stop the blood thinners until I have a consult with hematology. Additionally, recent bloodwork showed that my iron is low, so I need to do iron infusions again. I tried to see if I could do them at Penn Cherry Hill instead of going to Philly, but for some silly reason my transplant team can only refer me to the Pennsylvania locations, and I need a referral from hematology to get iron infusions at the Cherry Hill location. Hematology didn’t have any appointments available for several weeks, so I’m just going to schedule the infusion in Philly. Yay bureaucracy!

Lately it’s felt like the only time I leave the house is for endless medical appointments! Hopefully now that Spring is here we’ll get out and about for more fun stuff soon!