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 7th 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!
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