| I SURVIVED SCLERODERMA kwallin@comcast.net |
| My Story: |
I was diagnosed with Raynaud's Phenomenon when I was 15 years old. For anyone who doesn't know, Raynaud's is extremely poor circulation in the hands and feet. My fingers and toes were always blue. A few years later, in 1995 (I believe) I started to have some puffiness in my fingers. I went to see my doctor and, on a hunch, he did some blood tests. The test came back positive for Scleroderma. I didn't understand what Scleroderma was , so I began to do research on the disease. What I read scared me. All I kept thinking is how this could have happened to me. I was confused, scared, and angry. I was afraid I would die. I have always been a bit of a hypocondriac, so when I told my parents about the diagnosis, they were hesitant to think it was really that bad. But, the more they read, and the more outwardly obvious the disease became, the more they realized that I wasn't exaggerating. Following the puffiness in my fingers, was a serious amout of weight gain. I gained 40 pounds in about 6 months. I thought it was because I was a newlywed and away from home for the first time. Also my husband was overseas with the ARMY and I was eating out more often. Then, I began having pain in my fingers, hips, and knees. When the pain became so bad, I was missing work and having difficulty performing even the simplest of tasks. When I couldn't get out of the bathtub on my own, I knew something was wrong and had to be done. It was horrible and humiliating. My body hurt all the time, I couldn't do things for myself that I should have been able to do. My skin began to tighten on my fingers and up my arms. After a while, I couldn't even put on my own socks and shoes. My marriage was not able to hold up with all of the strain. I had to move back home and become dependant on my family for my daily needs at the age of 23. I felt completely helpless. I was a young woman trapped inside an old woman's body. I was a young woman who should have been enjoying life and maybe thinking of starting a family. Instead, I was forced to give up every bit of my freedom. It wasn't a person that forced me to give it up, it was Scleroderma.
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Eventually, I was referred to Dr. Furst at Virginia Mason Medical Center in Seattle, WA. He told me about this new, experimental treatment they were trying. They had only tried it 2 other times in the US for Scleroderma. It was so experimental that the insurance company might not cover it. I knew that a stem cell transplant was not necessarily a cure, but there was a chance my pain would go away and my skin would begin to soften. At this point, I was willing to try anything, no matter what the risks; And the risks were pretty great. They were planning to completely destroy my immune system and then it would hopefully "rebuild" itself and be healthy. I was ready to take the chance from the first time I heard about it, but I knew I had to give my family some time to think about it. My family was very supportive because they knew it was what I wanted, but they were definitely scared. We did a lot of praying about it and everyone finally decided it was worth the risk. We all wanted for me to be healthy again, to have a normal life.
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A Tough Decision |
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| The Transplant |
For about a month before the procedure, the doctors did test after test. Skin tests, lung function tests, EKGs, and even a bone marrow aspiration were becoming a normal experience for me. Then, I went to the clinic for injections which would help my stem cells to increase very quickly. Next, I went to the clinic for 3 days where they harvested my stem cells through a machine sort of like a blood recycler. They hooked up the machine to the catheter in my chest and it took my blood and ran it through the machine. The machine then sorted out my stem cells and gave me back the blood. Once they had all the stem cells they needed, they admitted me to the hospital for 2 days of radiation and 2 days of chemotherapy. When my blood counts were down to 0, they gave me my stem cells back through my catheter via IV. Three weeks later, on Easter Sunday, I was released from the hospital and got to go "home" to my brother's apartment in Seattle. I would not have been able to do this without the support of my family and friends. They were there all hours of the day and night, telling me to eat and walk and pushing me to get healthy. My brother played a very large role in all of this. He gave up his privacy so that my father and I could move into his apartment while all of this was going on. Faith also played a very big part. I did a lot of praying about this, and I feel like my prayers have been answered. I am feeling better now than I have in years. I am able to walk a fair distance and I can do almost anything a normal, healthy 24 year old woman is able to do. I feel incredible. I believe that this procedure has saved my life, and I hope that it will continue to save others.
Update 02-04-99.
These days I am doing very well. I go to school full time at our local community college. I also live in an apartment with an old friend from school and her daughter who will be 2 in a couple of weeks. I have had a couple of visits to the emergency room but nothing major. I have even more movement all over my body and my skin continues to get softer every day.
2-8-00
Today I am doing very well. I am living and going to school in Bellingham, WA. I am taking classes at Western Washington University and plan on majoring in Psychology. At the moment I am living with my sister and brother-in-law but am on the waiting list for my own apartment. At my last visit with Dr. Furst, he told me that I was doing even better than he expected. That was the best news I had heard in a long time.
In June of 1999, I had surgery on two fingers on my left hand to straighten them. I am seeing a hand surgeon here in Bellingham this week to see whether or not I will need surgery on my right hand as well.
I will try to update this much sooner than I did last time.
11-13-06
My new website is http://www.geocities.com/kirstinwallin/isurvivedscleroderma.html
My new email is: kwallin@comcast.net
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