In l980 I was 44 years old, with 5 children ages 19-24. I was the first Aerobic instructor in Oregon, worked full time for my dentist husband. With huge classes I decided to go in for a complete physical and make sure my heart was in good shape. With the blood draw being abnormal, the doctor called me in for another blood test. I knew they had made a mistake as I had never felt better!
For years at my annual pap smear I would complain about being a little tired and the doctor would put me on Iron and say "You should be tired, with working full time and having 5 teenagers".
With the final confirmation of myelofibrosis after the bone marrow tap, I became terribly confused as I really felt terrific. I flew to Stanford University and then they confirmed MF and I still did not believe it so went to the University of Oregon and on to the University of Washington for another confirmation. I still would not accept it.
I was called Thanksgiving eve and given 3 years to live. I then traced my records and found my blood cells had been abnormal since 1972. Unfortunately that is as far back as I could go. We decided to take off and went on a bare-boat charter in the Caribbean to see how we liked it. We were hooked, flew home, sold the dental practice, put the house on the market and left the world on a 44' sailboat. I flew to Arizona every 3 months for blood work and to see how much time I had left. After 2 years and no change I decided I wasn't going to die and changed my whole outlook. I went to a Naturalpathic doctor who bombarded my body with Vitamins and coffee enemas. I kept on that regime for at least 2 years while on the sailboat. For 5 years we were always in saltwater swimming and scuba diving in Mexico under the sun. Maybe that extended my life along with No Stress. Once I decided I wasn't going to die, those were the best years of my life.
Basically I have sailed through the past years with no problems, and no treatment. I went in every 6 months for blood work. I only had the one bone marrow tap until this year. January of this year I had my first terrible back ache and was passed off by my doctor. Then in April I had terrible left shoulder pain which ended up being a Splenic Infarct. My spleen had latched on to my diaphragm and was sending messages to my shoulder. In May my blood counts started downhill to 70,000 platelets, Hmg. 6.7 and hematocrit 20. I flew to Mayo, Rochester to Dr. M. Silverstein, who I had been writing to for years regarding MF. He called for an immediate spleenectomy Aug 16th, 1996. My counts as of November are still low. I had a transfusion last week and hope they can hold their own now. If not, they are thinking about Male hormones to stimulate the marrow. Dr. Silverstein hopes to have me on their research program for Oral Interferon in Dec. this year.
After all these years of our life’s changes, I have a very strong and positive attitude. I feel good and am happy about the decision to remove the 7lb spleen. We will be checking further at the Hutchison center for a possible stem cell transplant. My brother and sister were checked for a marrow match which proved negative. The risk factor due to my age being 60 and from a HOST disease from another person’ s marrow makes it impossible to contemplate a non related transplant.
I feel I have Doctors who will listen to my concerns and make joint decisions with me. We are enjoying our retirement to the fullest. I live a very active life of golf, swimming and walking. The Internet and my new-found friends have been a great help and support with this disease. We are constantly reading and searching for new ways for the treatment of Myelofibrosis.
Bonnie McDonald
Bonnie@Olympus.net