I am going for my third adult stem cell treatment in the last week of July. I am really excited for two reasons. The first and obvious is that my health will improve even more and I expect to be off oxygen in a few months. The second reason is that my CF doctor is somewhat on board. He keeps telling me that I have no proof that the stem cells did anything, but he cannot explain why I have not needed a tune-up in the last three years. I asked him what he needs for proof. He said to come in the office and he has ordered a complete set of PFT’s, more than the usual. Then he will do the tests again three months after the treatment. He said that will be proof for him to believe. I will be posting a pic of my PFT numbers before I go for the treatment.
I was unable to discuss stem cells with the CF doctors at Vanderbilt before I had the first treatment. They told me that stem cells do not work and refused to talk any further about it. You can read my archives for more details about that. But that first treatment in May, 2011, brought me back from the dead. In June 2012 I had the second treatment. In less than a year after the second treatment, I was able to go off oxygen during the day. Then several months after that, Summer of 2013, I started going backwards again. I needed the next treatment, but did not have the funds for the treatment. So in a few weeks, I will be getting the third treatment. About a year later than I needed it, but better late than never.
We moved to South Florida after the first treatment, and I discussed the treatments with my new CF doctor, but he said “You have no proof.” Meanwhile, three years and a second treatment went by, and I have not needed a tune-up. He knows I am an anomaly among the CF community. When has a CF patient been at end-stage, near death, too weak to eat or stand, then improved and gone three years without any IV antibiotics. My immune system is stronger, and osteoporosis has been reversed. He still maintained that I have no proof, but he cannot argue with the results. I am so blessed that I am able to have an adult conversation with my CF doctor and not have to hide what I am doing. I had to leave Vanderbilt to save my life.
Keep checking in to see the PFT reports showing my current lung condition. I know that the PFT’s don’t reflect everything going on with our lungs, but its the most comprehensive thing we have to compare the changes in lung function over time. I will post the “before” numbers after July 16, then the “after” numbers probably in October.