The BLOG seems like the way to go now a days. So now I start just 2 day before I go to Northwestern Memorial Hospital for my evaluation for the stem cell transplant. As some of you may know I have been through this before at MaineGeneral Medical Center in Augusta, Maine. Now I am starting over and my hope and prayers are that this time the transplant will be completed and I will be on my way to recovery and remission soon.
THIS IS MY STORY
Hello everyone. My name is Michele Marron-Meyerhoff and I was diagnosed with Scleroderma in 1990. I have lived a very full life until January 2006. Prior to January I was an avid skier, skiing in New York State, Vermont and Maine. I also skied out west in Utah, Colorado, Wyoming, Nevada and California. My husband Gary and I also road biked, mountain biked, rollerbladed and I went to the gym on a regular basis. In January 2006 I was taken ill and spent 2 months in the hospital, 19 days on a ventelator. Again in May 2006 I was hospitalized and spent another 2 months and on a ventilator again for 17 day. I was hospitalized 2 more times in 2006. I was home from December 15, 2006 until this October 2007 when I was in the hospital for a week and again in December/January 2008. Christmas and New Years in the hospital is not much fun. I have been on chemo, Cytoxan and Predisone in addition to many other medications. The stem cell transplant, using stem cells from MY OWN BLOOD is the only current treatment. This procedure has been very successful for lupus and other autoimune diseased. It is in trial for Scleroderma at this time, therefore, my insurance company is not willing to pay for this life saving procedure. I am using NFT, National Foundation for Transplants, to help with my fund raising. Go to http://www.transplants.org/, go to "patients we help" and put in my name "marron" you can see my page. I am on oxygen 24/7. My lungs are continuing to get worse. This procedure has been performed on approximately 20+ Scleroderma patients with successful results. The patients are no longer on oxygen. They no longer have the autoimune disease and are living full lives again. This is my wish to be able to have a life when I can ski and bike again with my husband, Gary. Gary has been with me every step of the way and I know I am here because of his devotion to me. I love you Gary.
More to come. Michele
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2 comments:
Hi Michele & Gary!
Great blog!! I cannot wait to hear some positive news from Chicago, I am sure no more than you! Talk later.
Love 'n hugs, Joan
I know Fred Hutchinson Cancer Research Center has done quite a stem cell transplants. How has that study worked out.
Keep fighting your insurance company. This procedure has been going on since 1997 in the United States and longer than that in Europe. 11 years is no longer experimental.
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