Here we go again!

[trevic]

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?

[piggie50]

Oh Trevor, I really feel for you. It's bad enough having to cope with this condition without having to fight every week for the treatment that has already been perscribed by a Dr that understands MPN's. I do hope that Prof Harrison can help you and have some sway in implementing the treatment you so obviously need. In this day and age it can't be too difficult to get your test results to the most experienced person to make the decision whether you need a transfusion or not.

Hang in there, keep fighting your corner and please let us know how you get on.

Very best wishes

Judy x

[trevic in reply to piggie50]

Hi Judy

Thanks for the reply. Sorry about the rant but all evening I felt the anger building up. I just had to let it out. It was probably lucky they had all gone home in the haematology department by then!

Trevor

[Paul42]

Hi

You have to have your consultant on top of things, hopefully when your under Prof Harrison this will happen.

I know had my consultant not been on top of my case i would have had my spleen whipped out by the heptology guys.

Its so annoying when your speaking to someone else, who doesnt understand MPN's and you see the look on their face which says they think we dont know what we are talking about.

Keep fighting.

Paul

[trevic in reply to Paul42]

Hi Paul,

Thanks. It's even more annoying when you discover the person you thought might know a bit about MPNs seems to know very little!!