Jill Rosen treated for antiphospholipid
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When asked to write a brief testimonial about my experience with my stem-cell transplant, I was immediately thrilled and petrified. Making this explanation brief seems nearly impossible. That said, I realized I could sum up my experience in one short sentence: My adult stem-cell transplant saved my life. As you read my experience, please understand that you are getting just a glimpse of what I consider the most important time in my life.
I was diagnosed with antiphospholipid syndrome (an auto-immune disorder causing blood clots) with lupus-like symptoms, in a dramatic and life-threatening experience in January of 1997, having just turned 18. For almost ten years, I struggled through hospitalizations, surgeries, a few near death moments, chemo, and a barrage of other intense health related situations. I was going through one of the most important and challenging times in any person’s life – my late teens and early 20’s – and was being further challenged by things no young person should have to deal with: insurance, experimental chemo treatments, self-injected blood thinners, etc.
After a rather distressing 2 years, from 2002-2004, during which time I was in the hospital no less than every 2 months, I was worn out. I was stumping doctors, I was not responding to treatments, and no one really knew what to do in the long term. No one was afraid of death, exactly, but no one knew how to sustain my life. I was 25 years old.
My hematologist in New York City (I had doctors in both NYC and Chicago) recommended that I contact Dr. Richard Burt about a radical treatment he was working on involving stem cell replants for auto immune disorders. This news sounded like a beacon of hope, instead of something strange and scary. I returned home to Chicago and immediately called the office. The receptionist asked if I had heard of Dr. Burt from his recent appearance on The Today Show. I had not, but was all the more intrigued.
Dr. Burt returned my phone call almost immediately, and after hearing a brief synopsis of my health, suggested this treatment would work for me and invited me for a consultation. A few weeks later, I met with the team that would change my life forever — Dr. Oyama, Kim Yaung, and Dr. Burt. We met for roughly two hours, discussing all the options, looking at my charts. Though my case was not catastrophic at this point, it certainly would be soon, and they couldn’t guarantee I would live much past 30, and they could assure me I wouldn’t live very well if my lupus remained in its current state. They seemed confident that I was a wonderful candidate for the transplant. When we finished, I was certain this treatment would work for me.
The next 6 months were a blur of insurance approvals and a few hospitalizations (only securing in my mind even more that I needed this treatment.) I left my job and rallied my family and friends together for support. It was hard for people to understand, at first, but everyone in my life dove head first into learning and research, and all gathered to help me through the experience that would surely change my life. I cut my hair and donated it to Locks for Love in preparation for the chemo, and I was on my way.
On February 3, 2005, I began chemo treatments. On February 28, I went into the hospital to begin the full treatment. Days of chemo came and went. I truthfully remember very little of it, due to high fevers and illness resulting from the chemo. On March 7, 2005, my stem cells were replanted into my body. I suffered some side effects and complications, though nothing too severe, and I was officially and finally released from the hospital at the end of March.
My recovery was exhausting, but I was more than determined. I was sick, clearly, and had to have home care nurses and see the doctors all the time. But something inside of me felt that I was different now. I was healthier now. I spent the next few months wearing a wig (having lost my hair completely from the chemo) and started readjusting to life. I still saw the doctors quite frequently, and at first we were not all sure that anything had changed.
I had to be hospitalized a few times during the next year, and I’d be lying if I said each time didn’t wear me down a bit. I was certainly tired of being ill, and the back and forth of doctors, undergoing tests and enduring hospital stays, but still, I felt like I was so close to turning the corner to being a healthy woman.
I fell in love in August of that year. Before the transplant, I was never ready to even consider seriously letting myself fall in love. Then I found a man who loved me enough to understand everything I had been through, and was willing to continue the journey with me, no matter what that meant for him. I eventually moved away with him, 90 miles outside of Chicago, away from my doctors, with the promise that I would return as often as I needed to. And all of a sudden, my life started to change even more.
Over the next 9 months, I saw the doctors only 4 times. I was not hospitalized at all. I had my 18 month follow-up in the fall of 2006 and my test results were drastic. Things that had been positive in my body for almost a decade were negative; factors that had been high for most of my adult life were nearly untraceable. My doctor, Dr. Oyama, went on sabbatical and left his practice and yet no one was scared or worried about what would happen if I got sick again. There was no fear of the unknown, for the first time in a very long time.
In March of 2007 my boyfriend and I went into Chicago to meet with Dr. Burt for my 2 year follow-up. Again, test results were negative, factors and were lower than ever. The transplant had worked. I walked out of that appointment knowing that Dr. Burt didn’t NEED to see me until the following March, for my three year follow-up. I walked out of that office knowing that although I would still need certain medications and follow-up, the transplant had saved my life.
It has been another year, and I just saw Dr. Burt last week for my 3-year follow up. As I filled out the health survey (part of the follow-up protocol) I realized that I could say, for the first time in my adult life, that I had not been hospitalized in over 2 years.
My family and friends all celebrate my “birthday:” March 7, 2005. As I sit here, feeling three years old, I realize that I still count the days all the time. I used to be worried about every little headache and bruise. Now I live an almost completely normal life, and worry a whole lot less. For the first time in 10 years, I can think about the possibility of having children, and living to see them grow up without a sick mother. I am more in love than ever. I don’t ever regret spending all that time sick, or worried, or stressed about everything. It helped me to get where I am today, and has turned me into the person I have always wanted to be. I am thankful every single day for all that I went through, and all that I have seen and felt.