Just when I was starting to get comfortable here in Bristol, the rug gets pulled again. After 10 months without a consultant and receiving just RBC transfusions I finally got to see a consultant. She appeared to have a plan. It seemed she had thought about me before my clinic appointment. She spent time with me (lots) and SHE CAME UP WITH A PLAN! Now I'm off to see Prof Harrison at the end of the month so we agreed not to start any medication before then. She thought she would 'tweek' my transfusion regime to what she called 2+1. Two units on a Wednesday followed by a top up on the Friday all on a fortnightly basis. Whilst not too keen to become MORE transfusion dependent THIS WAS A PLAN....A plan just for me. Now my wife and I already knew that the hospital was not keen to transfuse above a certain level. What if this works and my Hb starts to climb. She told us that not too many people understand MF - NO KIDDING - and that we should not be pushed off our plan AND if someone tried to change it when I went for my transfusions we should stand firm. Well the 2+1 happened ONCE - I felt great! After that the +1 was cancelled the next time and this week they tried to demote the 2 to 1 AND cancel the +1! I stood my ground over the 2 but today they cancelled the +1 again, my Hb was 95. I insisted on speaking to my consultant who thought perhaps ' she hadn't explained it very well'. I keep a journal and I know exactly what she had said. When the Chemo nurse phoned to cancel she said my blood counts had been checked by a doctor I don't know. I THINK MY CONSULTANT HAS BEEN GOT AT. I think they have slavishly followed guidelines irrespective of how I feel - the best since diagnosis. So the hospital is back on probation and I've got 18 days (not that I'm counting or anything) until my trip to Guy's. The big question is, can I trust my current hospital to implement anything Claire Harrison suggests?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.