I had my lung function test on Tuesday. Seems I was close to where I was back in August, which was a huge relief after the drop I had last month.
I asked my nurse practitioner & doctor if it would be alright for me to selfishly have January as another month to relax & distance myself from hospital stays.
Another month to give my kidneys a buffer of a head start as well as maybe work with my exercise study investigator on a bit of upper body strengthening to prepare for the transplant.
They seemed fine with that once I explained how I wanted to spend the time.
Then came the question of “Do you want to delay transplant?” My answer was no. I told them I only wanted another month of feeling decent to combat the month of hell I experienced healing from October.
I knew they sensed this was what I wanted, just wanted me to be the one to say it.
I have been around the block enough to know that the window of transplant does not remain open indefinitely & things can change on a dime. I know it will be a challenge for me so I want to be fully prepared to meet it, both physically & mentally. Something just told me, February is it… (I don’t ignore my gut instinct as it is usually on point.)
I’ll go down the end of January. I’ll stop the Rapamune, talk & probably sign surgical consent, review a few more test results with my team, & then be fully prepared to list in February & begin my wait.
Meanwhile, I get all of my holiday season & my local improv festival without listing looming & hanging over my head.
I admit I did better trying not to think about the appointment beforehand but I was having some anxiety about whether my results would be better or worse than the prior month, even though I was feeling like I had rebounded. I wouldn’t believe it until I saw it on paper.
Call me selfish, but if there are things I can still do & enjoy I want to be able to do that without any distractions for one last time.
I plan to fill my wait time with revising my novel I authored in November, possibly take a stand-up comedy class, maybe a few more artsy type classes or workshops if I’m up to it. I know it depends on my energy levels & stamina. Yet it feels good to feel a little better than what I was feeling & to think about doing a few creative things to fill that wait time.
My center & my surgeon are doing about 3 transplants a week. I find this encouraging because it means it may not even be the full 6 months I need to wait before I get my new lungs. I will greet them with open arms when they do come. Then these lungs will go to a fabulous researcher to hopefully help combat these diseases more effectively.