I had an incidental finding of my MPN, or blood disorder as it was called back then in 1990. My husband and I were curious about knowing our blood type, cholesterol levels etc so off we went for a blood test.
My GP called me back for a repeat test citing he “just wanted to check something”. He phoned me one evening and told me “I think you have leukemia and I’ve arranged for you to see a haematologist first thing tomorrow morning”.
We met with the haematologist who explained that on reviewing the blood tests, she thought I had Essential Thrombocythaemia and performed a bone marrow biopsy (no sedation back then!) there and then for confirmation. Confirmation came on my 29th birthday and one month before my husband and I were eloping.
I believe that having a wonderful secret and looking forward to such a special time saved me from dwelling on this diagnosis and what it might mean for us in the future. On our return my haematologist said “babies now” and that became our focus and 18 months later, our daughter was born. Meanwhile, all our research, very limited back then, said that life expectancy after diagnosis was 5-10 years! Now that did terrify us but we were assured that this applied to people diagnosed in their later years who usually had other health issues.
After experiencing dizzy episodes of varying durations, I commenced Hydroxyurea (to reduce my platelets) and, then, Warfarin. This was my only medication regime for over 20 years and ensured that my quality of life was good, normal even. My only concession to my ET was that I worked three days a week and we had help in the home with cleaning. Regular blood tests and monitoring by my haematologist with an occasional bone marrow biopsy were the only interventions.
Last year a blood test indicated more “blast” cells and a bone marrow biopsy revealed that my marrow had become fibrous (grade 2) and I had progressed to Myelofibrosis. I was so disappointed as I thought I had escaped progression after having 25 years of ET and a very normal life. Within 6 months I had further progressed to grade 3 fibrosis and I was approved to go on Ruxolitnib. Unfortunately, Ruxolitnib did not give me the quality of life that Hydroxyurea had, and I was fatigued, transfusion dependent and had strong bone pain. This meant that working was ceased and I began marking time until a proposed bone marrow transplant.
Twenty six years on, I do not talk about a “journey” but that I have lived my life with my MPN’s, and we have lived together for so long it is part of who I am. I have rarely felt restricted and have made the most of every opportunity. Whilst I remained with my initial haematologist, I did consult others from time to time to ensure that I was receiving best practice treatment. I am a glass “half full” person and I’m convinced that having a positive attitude goes a long way. My stem cell donor was a 29 year old German male and I love the symmetry, being 29 years at diagnosis. I’ve told my transplant doctor that I’m expecting another 26 years and he didn’t disagree! My blood group has become my donor’s. I’ve gone from A- to B+ (be positive). How perfect.
Tracy W, Sunshine Coast, Queensland
Post Essential Thrombocythaemia and Myelofibrosis, Allogeneic Stem Cell Transplant 2016
