The Nuclear Option

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…

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