So…. lung function still declining, albeit more slowly. Need to look at what other options are out there to ensure I live past 2017! As I see it, there are four other paths that others with systemic scleroderma follow with varying degrees of success.
- An antibiotic protocol (AP) that I do not know a whole lot about just yet.
- Stem cell transplant. My rheumatologist, Dr. Khanna, recommends against this.
- Accupuncture along with Chinese herbal therapy. They have found some success in putting autoimmune diseases into complete remission using this, although I do not know of any scleroderma patients that have gone this route.
- A full lung transplant (the nuclear option). This will work, but I can likely see my ultimate demise on the horizon because average life expectancy following a lung transplant is about five years. Plus, many lung transplant centers will not perform a lung transplant unless scleroderma is already in remission, which leaves me out right now.
After sorting these out, I settled on a path forward. First, I need to learn more about stem cell transplant. After much research, I found that one of the world’s foremost authorities on hematopoetic stem cell transplant for systemic sclerosis (diffuse scleroderma) patients is Dr. Richard Burt at Northwestern University Medical Center in Chicago. I initiated a contact with them to see if I could be evaluated for their program. At the same time I met with Dr. William Lynch, a thoracic surgeon at the University of Michigan lung transplant center to begin the process of being accepted for a lung transplant. I figured that if I ended up going the transplant route, I could try the accupuncture/herbal therapy while I was waiting for a transplant and if herbal therapy happened to work I could skip the transplant. On October 10, 2016 I had an initial meeting with the lung transplant team and Dr. Lynch to learn more about the process. Frankly it was grim, primarily because it was uncertain if I could get approved and if I was approved my life expectancy following transplant was not very long. However, if no other options exist, five years is better than no years so I decided to go ahead with the preliminary testing required for lung transplant. At least I had a direction…