Myelofibrosis Story

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Myelofibrosis Story

by California on Wed Feb 08, 2006 12:00 AM

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Hello, This is my first time visiting this site; I think it is wonderful to find support. I just lost my Grandfather(72) to myelofibrosis; being such a rare disease it seems the doctor's still do not have a set cure. My Grandpa had it for over 4 years and this past year in May 05 his spline began to grow rapidly; After years his primary physician sent him to a specialist (oncoulogist) at St. Joseph hospital in California. They tried giving him Chemo shots to shrink the spline; all that did was make him lose weight and his appetite. Eventually he grew sick and his white cell count became out of control. He was admitted to the hospital a few times towards the end of the year for blood transfusions as well as apheresis( like a blood filtration taking out bad plattelets). My Grandpa weighed over 200 1bs. last year and the last time he went into the hospital was down to 140 lbs. The spline had grown so large he was having trouble breathing; he was weak; but his doctor needed to get his spline out immediately(Jan. 06). His spline weighed 20lbs. the largest spline the surgeoun at St. Josephs had ever seen. After removing the spline; he now weighed 120 lbs. He was weak and now that the spline was out; his immune system grew weak; his body began to fail and he passed away on Jan. 27th 06. I have learned so much about this disease and wanted to share my story. My Grandfather had some of the best doctors and care in that hospital. My advice is to stay away from chemo and radiation with this disease; it will only make you sick. If my Grandpa weighed more and had more strength he could have lived after his spline was removed. Please ask me any questions; I am here to help. This is a scary disease because it is so rare and I believe talking about it will help find a cure.
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