I posted this to another social account. But I felt it was worth sharing here:
Last month around this time last year, I was really struggling to breathe, literally starved for air. I was on 8 Liters of oxygen and inching closer to 10 with some things. My best friend (who is also my caregiver) went all out & made us an awesome vegetarian meal as usually does on Thanksgiving Day. I kept thinking through the whole meal that maybe by next Thanksgiving I would be free of oxygen. That turned out to be true. I will say in all honesty that last November was hell for me, despite all the fantastic support I had. I was living on about 15 percent of my lungs. A few weeks later when I was transplanted I was down to just 12. You can live on as low as 8 percent but there’s very little if any quality of life. I was very lucky that during my 9 month wait, save a few weeks, I was able to be at home. But had I pushed 10 I might have had to wait in the hospital because my oxygen company wouldn’t really have the resources I’d need. I remember this on the tough days & blips.
After a 13 year onslaught of LAM, & 39 years of TSC, my lungs refused to give up. It was a true testament to their strength that despite so much obliteration they carried me through until my donor & I crossed paths. I doubt either one of us would have lasted much longer. My progression in that 9 months was the fastest in all of these 14 years since diagnosis. Rapamune bought me 5 of those years. This is why I’m such a strong proponent of rare disease research. Without it, I wouldn’t have made it to transplant or likely not even been eligible. This is also why after they were done caring for me, my lungs were donated back to research in my diseases to see if they could help unlock some mysteries. I like to think they are still hard at work, just in a different way.