Breathing easy

A month ago, before my most recent bronchoscopy, my lung function was down to 71%. I knew things were going better this time around, based on my home spirometry numbers as well as how I feel. With previous bronchoscopies it only took a week for the wheezing to start up again. It’s now three weeks since my last bronchoscopy, and the wheezing is still minimal. But even so, I was shocked when I did pulmonary function testing today, and the respiratory therapist said my lung function was up to… 89%!!! I thought I heard him wrong, or that the machine was broken! That’s the highest I’ve managed not only post-transplant, but in 14 years! And that was with some wheezing on the right side, which means with completely open airways I could go even higher!

Clearly my lungs are doing great! Unfortunately, the rest of my body is still catching up. Joint pain is an ongoing issue, and it’s pretty rough to deal with since it’s so pervasive and nearly constant. The slightest every day activities can trigger pain so sharp it makes me yelp. A week and a half ago the orthopedist reviewed x-rays as well as blood tests, and said nothing indicated structural problems or arthritis. Like my transplant team, he thinks the pain is most likely my body withdrawing from the steroids. He referred me for aquatic therapy so that I can get exercise and maintain strength and muscle tone without straining my joints. And he said my best bet for controlling my pain while waiting for my body to finish adjusting is… medical marijuana! I thought medical marijuana wasn’t an option due to an interaction with one of my anti-rejection medications, but apparently I CAN take it (in edible form only!) as long as I take it on a set schedule every day and we monitor my levels closely. Unfortunately the orthopedist wasn’t able to set it up for me, as he’s licensed in PA and I live in NJ. I wasn’t thrilled to have to continue waiting in pain, but fortunately I was able to get an appointment with an NJ provider relatively soon. I’ll keep you posted about my new life as a pothead!

I asked my doctor today what’s the longest he’s seen someone go through joint pain from Prednisone withdrawal, and he said a year. This was NOT the answer I wanted to hear, but at least I know that I’m “normal,” and that improvement IS still possible. He was also encouraged when I told him I randomly had three good days in a row last week, and said that a lot of people don’t have any good days before they recover. I don’t know why I suddenly felt better or why it went away, but hopefully it’ll happen again. And hopefully I WON’T be someone who takes a year to recover, and I’ll be able to get the most out of these shiny new lungs soon!