I did reach the major milestone of celebrating my 3 year transplant anniversary. Recent Scientific Registry of Transplant Recipients (SRTR) data shows that I'm a member of the 64% who have done so. Not only have I survived, I have thrived. Yes, there have been setbacks. And yes, I am having some issues that I will talk about in a bit, but I have survived. I am doing much better than I was the year prior to my transplant. I am not back on supplemental oxygen, and I am enjoying life.
Life is good, and my new lungs have been a wonderful gift from a very generous donor family. Now part of package that comes with the gift of new lungs is the knowledge that there will be setbacks, and that new lungs don't last forever. My lungs are on the downward slope side of the post transplant lung capacity bell curve.
We are not sure what is going on with the little dip at the tail end of the graphs. It may be a continuation of the chronic rejection that started near mid-chart, or it may be triggered by something else entirely. A steroid pulse over the weekend followed by a taper that I am on now seem to have stabilized things once again. We'll see soon enough. I've also been having issues with very low white blood cell count and other related labs so my meds are all out of kilter. Again just part of the package.
I am a bit reluctant to talk about this new chapter in my journey as I really don't want to discourage anyone who is in the middle of making the decision about lung transplant. Thinking about it, I feel that writing about what is going on may be helpful to some, I know information like this is something that I look for, and cannot find.
So what do you think? Are you interested in reading about my annual testing results, hearing about what's going on with the new lungs, and following along this new chapter in my journey?
Let me know, I'm really interested in your thoughts.