hsct-Multiple Sclerosis

DECIDING HSCT WAS RIGHT FOR ME

The decision to pursue HSCT (hematopoietic stem cell transplant) was not easy. It's a treatment not yet fully embraced by Neurologists and is typically a last resort in the US. My neurologist, Dr. William Meador, whom I trust and respect, felt like we had many DMD (Disease Modifying Drugs) options that were more aggressive and less risky but agreed to continue treating me should I choose this path. However, another neurologist laughed in my face telling me it was a last resort, and I would likely die if I used "medical tourism" since it's unregulated. I mentioned Dr. Burt's research in Chicago, which he immediately dismissed and said it is not yet peer-reviewed. That was my only appointment with him since I felt dismissed. 

There is research showing the benefits and risks of each. Unfortunately, the DMDs do not come without their own set of side effects, some of which can also be deadly. I felt worse on the one I tried and was very reluctant to try another. Dr. Meador only operated in Science and was very transparent about the pros and cons of each. For me, I couldn't ever settle into the idea of taking something every day, only slowing progression without halting the disease. That is where my decision to have HSCT came into play. It felt worse not knowing what each day had in store. I felt like I'd rather accept the risks of halting the disease than hope things would stabilize temporarily. Statistically, HSCT has a higher success rate than DMDs, and it's like a game of Russian Roulette trying to find which medicine is right for you, done only by trial and error. I felt like if HSCT didn't work, all the same options were available. However, there was a window for HSCT producing the best results, and my EDSS score was rapidly cruising towards the line of no longer being eligible.  

After spending months researching, I contacted Dr. Burt. Unfortunately, his trial had ended, and he was preparing to travel to present his research. The following person I contacted was Dr. Fedorenko in Russia. He was unique in that he had a background in neurology, also treating patients with HSCT, and regaled as a pioneer in treating Multiple Sclerosis. After speaking with his nurse Anastasia who had undergone treatment personally for MS with Dr. Fedorenko, I had decided this was what I wanted to do. Next, I contacted two women I didn't know, and they were both so strong, beautiful, kind, patient, and helpful. Ivy Marcucci completed treatment with Dr. Burt in Chicago, and Chelsey Bell completed treatment with Dr. Fedorenko. Both were extremely helpful and open about their experiences. My exchanges with them solidified my decision, and I am forever grateful to them for taking the time to answer a stranger's questions.  

I decided to head to Russia and scheduled my date, but COVID hit, which shut down travel. I remember feeling inconsolable because I desperately wanted to feel better, and my disease was getting much more debilitating. We moved the date three times but still couldn't get a medical visa, leaving me feeling defeated. Then, through the tears and prayers one night, I found Dr. Ruiz. I looked at Clinica Ruiz in Puebla and spoke to staff, who put me at ease. I was scheduled and quickly made travel plans. They were so organized, quick to respond, patient, and willing to help every step of the way. I was so relieved that I didn't have to continue waiting, and travel was open between our countries. My family was worried about me traveling and depleting my immune system during a pandemic, but they had every safety measure possible in place. My more immediate concern was the airport, but it was desolate and had safety protocols in place, providing reassurance that I was on the right path. My only wish for HSCT is that I had done it sooner. Unfortunately, there are no promises of success or reversal of damage; the only hope is freezing the disease in place. I am lucky to have seen many gains and feel like if this is the worst my condition will ever be, it is more than liveable. I am grateful to my family, friends, nurses, and doctors because I feel like I can breathe again being given the gift of time and routine without uncertainty, so for me, the benefits far outweighed the risks, and I'd do it 100 times over.    

Check out my Other Resources Tab for a list of videos and websites used to help aid in my decision.