An Early View from the Other Side

Before I get too far down the road with my recovery, I should record what it feels like to begin the long haul back to whatever “normal” is going to be.  First, let me state that I’m very, very fortunate.  Fourteen months ago my hands were hardening and curling up.  I had dropped 30 pounds that I didn’t need to drop and I was so weak that I could not take the top off a bottle of water or safely hold a glass in just one hand.  I coughed constantly as a result of the damage to my lungs.  My rheumatologist was telling me that the goal was to slow or “maybe” stop the progression of the disease.  And Dr. Khanna has a well deserved worldwide reputation as an expert on scleroderma.  He wanted me to understand that there is no cure.

As recently as last October, I had a conversation with Dr. Khanna regarding my prospects. He felt I was not a candidate for stem cell transplant because my lung function was too low (DLCO at the time was 29%).  I applied for admission into the lung transplant program at U. of Michigan, but I also contacted Dr. Burt at Northwestern University Medical Center.  In listening to his seminars and reading his papers, it was apparent that he believed otherwise.  He was convinced, and he convinced me, that the stem cell transplant mortality rate was tied to heart failure.  Patients did not suffocate as a result of poor lung function.  Not exactly risk free, but it sure beats the five year average life expectancy associated with a lung transplant so I decided on the stem cell transplant route.

With that as a brief background, perhaps you can understand why I am almost giddy today at Day +68 post-transplant.  There are any number of signs that my recovery is proceeding well.  My energy level is perhaps two thirds of what it should be, but that is double what it was only two months ago.  Last week I went through a cardioversion procedure to stop the atrial fibrillation in my heart.  That alone was like a V-8 engine running on all 8 cylinders again instead of limping along on seven.  And my hair is returning!  Although it looks like I collected lint from our dryer lint trap and glued it in place.  I even have static cling…

More importantly, my resting heart rate, which escalated into the 78-85 bpm range as a result of the hardening of my heart, is now dropping back into the sixties.  I’m hoping that is an indicator that my heart is softening once again and may return to normal.  This week I learned that the RNA Polymerase III antibody (the bad antibody that caused my immune system to turn on me) has dropped to near normal.  Fourteen months ago the test showed that it was in excess of 150, which is basically off the chart as a very strong positive test result.  Today it is at 23.9 where anything less than 20 is considered negative.  Essentially a very weak positive test result.

It will be another four to six months or so before I know for certain that I am in remission, but the future looks much brighter standing on this side of the transplant process.  I know this is more detail than anyone wants to read, unless you are another scleroderma sufferer considering a stem cell transplant.  To those individuals I would offer two primary takeaways from my experience.  First, the best person to make decisions about your health care is you.  Learn everything you can, even if it seems overwhelming at first.  I was absolutely lost a year ago as to what was happening to me.  You can work through it by obtaining good information.  Not every one of your doctors will agree with some of your decisions.  Just remember that it is your life on the line.  Second, have faith that you will have a positive outcome and know that attitude is everything in getting to that outcome.  It is not easy hearing that there is no cure and that ” the best we can do is slow the progression”.  I can’t tell you how to convince yourself that you’re going to survive and you will find a solution.  I just know it can be done.  Prayer, a positive attitude, and a strong support system are key.