Last night, I celebrated my one year transplant anniversary. At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.
I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.
I was waiting until after that celebration to share what I found out last month.
They did narrow down and figure out why my function had dropped unexplainably over the summer.
A virus attacked my lungs. As a result I have damage. It’s mild chronic rejection.
Yes, those words — which I know strike fear into any one who lives with a transplant.
However, this is a form of rejection that’s manageable with drugs. My team & I hit this hard from the beginning. We narrowed down & eliminated everything else.
I am relieved that it wasn’t an issue that required surgery.
My team tested & worked me up for everything to pin this down before arriving at this diagnosis.
I might not get that function back.
This just proves you can follow instructions to the letter & things can still happen.
Was I scared & disappointed? Yes.
Was it a blow? Absolutely.
But fact remains without my transplant I would not be here – end of story – so that disappointment was tempered somewhat.
My quality of life is still better than it’s been at least 2-3 years before my transplant if not a little more.
I’m still oxygen free. Can still enjoy life without starving for air.
Fact remains with the function I have now (around 60 percent) I lived with for several years with LAM very actively with good quality of life so I know how to adapt to this change as I’ve been here before.
My lungs thankfully aren’t wracked with cysts so this 60 percent is better than my old 60.
I still have challenges & things to work out. But I always am going to.
My stamina & energy have been decreased because of anemia. I’m getting my levels run again tomorrow so I’m hoping that my supplement is kicking in so I can be a bit more active than I have been.
It’s been improving ever so slowly because I am able to stay awake during the day now versus feeling wiped out over everything.
This is the poorly understood part of transplant that not a lot of people see. It’s also an often private pain that’s hard to talk about too.
There’s a line of what to share for people’s benefit & to avoid isolation but then to preserve privacy & allow oneself to process what’s happening with their body.
That line is not always clear.
On the bright side, I made it through my first year with many less complications than I anticipated given my surgical history pre-transplant.
I’m thankful for that & my support system.
In the spirit of new beginnings, I have maintained this blog since August of 2015. I still may post occasional updates, but I am entertaining starting a new blog in 2018 with a different focus to re-energize myself to things outside of transplant world.
Transplant world is still important, but it’s always going to be here since I live it.
I feel like now it’s time to spread my wings some & focus on something else.
I’m just not sure what that is as of yet.