Northwestern University Medical Center & Dr. Burt

After spending an inordinate amount of time online learning more about both lung transplant and stem cell transplant, I found that a Dr. Richard Burt in Chicago was having a great deal of success with autologous non-myeloablative hematopoetic stem cell transplant for patients with scleroderma, along with other autoimmune diseases such as lupus and multiple sclerosis.  Moreover, he was adamant that the limiting factor to a successful transplant depended on the condition of the heart, not the lungs.  Stem cell transplant overall experiences about a 10-12% mortality rate during treatment, making it a rather risky undertaking for those electing to go through with it.  Dr. Burt found that those that died were dying of heart failure.  They were not suffocating as a result of poor lung function.  Moreover, he found that the heart failure is related to the radiation treatments (myeloablative) patients were subjected to along with the chemotherapy.  By eliminating the full body radiation from the treatment protocol (non-myeloablative) Dr. Burt’s treatment related mortality rate dropped to 5-6%, basically half of what everyone else was experiencing.

Based on this information, I decided to apply for hematopoetic stem cell transplant (or HSCT as it is more commonly known) with Dr. Burt at Northwestern.  On October 24-27 I was in Chicago undergoing a week of testing to determine if I was a viable candidate for HSCT.  Easily some of the most comprehensive testing I have been through.  A two hour CT scan that generated over 5,000 images of my torso.  Pity the radiologist that had to review those files!  A right and left heart catheterization that was pretty miserable to undergo, but it yielded some new information on my heart.  Even though the right heart catheterization at U. of M. ten months earlier had found nothing wrong with my heart, by this time scleroderma had begun hardening my heart, or more specifically hardening the pericardium surrounding my heart.  Not good news.  This is the condition at the root of the 10-12% mortality rate among HSCT patients.

Not to be deterred, Dr. Burt had developed what he refers to as the “heart friendly” protocol to allow HSCT to go forward for patients with heart involvement.  Basically less cytoxan chemotherapy and more fludarabine, another chemo drug that is easier on the heart.  I would be approved for HSCT based upon using the new heart friendly protocol.  All that was left was to convince my health insurance to pay for the $175,000 procedure that was so new that only 15 patients have gone through it as a part of a clinical trial.  No problem there, right?!?  Northwestern has a nurse coordinator for the HSCT program, Carol Burns, who knows insurance companies.  Carol worked her magic and in a little over a week I was good to go.  Onward…