Two years ago today, I received an invaluable gift from my brother: he gave me one of his body's organs -- a kidney! What a loving, selfless, and brave thing for someone to do. This act of kindness has allowed me a longer and better quality of life than I was otherwise facing. And I'm forever grateful.
Hospital/pneumonia update: Being home was extremely challenging for the first few weeks. Progress was slooooow and my overall health felt overwhelmingly horrible. Fortunately, little by little, I was able to do more, then do more without oxygen, and then finally do more without shortness of breath and acute fatigue. I was surprised and incredibly grateful for each development, as it was a very real possibility in my mind that I would never regain all that I'd lost.
Now, I am able to do most of my usual dog walking with not too much stopping and very little shortness of breath. My IVs ended at the end of July. I had my pulmonary recheck yesterday complete with the first PFTs since my hospitalization in early July. While I'm feeling loads better, my numbers were only slightly higher than last time.
Chronic rejection update: a treatment called rATG ("rat-G") had been tossed around as a serious possibility after IV antibiotics were finished. However, considering the new super-resistant bacteria in my lungs and the low probability of success in slowing down or stopping chronic rejection with rATG (10%), my doctor and I agreed that it's. not worth the risk of wiping out my immune system's immune cells when there's a very real chance that suppression could also cause my antibiotic-resistant lung bacteria to blossom. We were fortunate that I had a good response to the IV antibiotics, but there's no guarantee how many times they may continue to work, and the effectiveness of other options is much less reliable.
Instead, we are going to try to get insurance authorization for a treatment called photopheresis. It's a similar concept to dialysis in which they remove your blood, treat it with a chemical found in lemons, zap it with UV light, and give it back to you. I would get a PURPLE POWER PORT inserted to do this. It's a slow and potentially long endeavor and goal is to encourage the presence of more "good" immune cells and filter out the "bad" ones. The time commitment can be cumbersome, but the side effects otherwise are minimal. Here's hoping!
Lots of love,
l
