After a quick trip to Chicago, the preliminary results are back. The researcher, Dr. Burt, who is conducting the ASSIST trial has evaluated my pulmonary function testing and skin score testing and, under study protocol, I am moving into the crossover group.
As I mentioned a few days back, the study protocol are clear for a member of the control Cytoxan group to move into the experimental stem cell transplant group. Skin score must worsen by at least 25% or lung function must decline by an additional 10%. Unfortunately, since my last visit in late August, my skin score has more than doubled--a worsening of 140%. My lung function has declined about 20% since my initial Chicago evaluation. Sadly, I more than meet criteria for the crossover to the stem cell transplant arm of the study.
So, what happens next? I did have other testing done while I was in Chicago and I do not yet have these results. If my cardiac function declines, I may not be able to receive the stem cell transplant. The study is quite strict about cardiac function, and I have a heart defect (atrial septal defect) and some questionable heart thickening which could keep me from the transplant. That will remain in question until just prior to transplant, as I will need to return to Chicago for another heart catheterization, a cardiac MRI, and additional heart stress testing before I could be cleared.
My insurance will need to re-approve the procedure. This takes time. I was approved last year, but did not have the transplant, so we may have to start the process over.
I will see my local rheumatologist and my specialist at UCLA for additional opinions about my options. The key, I think, is to make sure that reasonable options are exhausted but not wait too long. Dr. Burt admonished me about my personal risk in waiting too long, as my heart is the big question to him. The greater the damage to my lungs, the greater the strain on my heart, and the greater likelihood that I will not be able to receive the transplant.
He and his nurse also reviewed some of their latest transplant data, which were more mixed than the review of a year ago. Some patients are having recurrent scleroderma problems about 2 years after transplant. Some continue to do well. Patients who are still "high functioning" like me are less likely to see dramatic improvement, while those who are, for example, already wheelchair bound might find themselves able to walk and drive again. This certainly is a more dramatic response than what I can expect, which would be to hope for stabilization of lung and musculoskeletal function.
My greatest sadness at the visit was a discussion about my horseback riding. I feel slighted still that nearly 3 years ago I was forbidden to play tennis. Now, my doctor has said that for a period of 4-6 months at minimum after transplant I will not be able to visit a stable. Apparently, there is a fair amount of fungus in hay, soil, and airborne at stables, which can be inhaled and create significant health problems for those with brand new immune systems. Hence, I will be restricted from riding and visiting my horse. I have thought a great deal about this issue today, and I think I will put Atlas up for sale. I hate to think of him missing another year of the show circuit--he's not getting younger and he's an amazing athlete.
More than ever, I would love to hear back from you. Let me know what you think about my options. Let me know what you think I should do about my beautiful horse. I'd love to hear from you.
