Thank you

[Rachelthepotter]

Thank you to everyone who’s replied to me about the hassle of getting hold of one’s own data in the UK, and also about the general difficulty of balancing cumulative iron load with its future problems, against having a reasonable quality of life right now from transfusions

I did take EPO injections at one stage, but they were discontinued, partly because I had skin cancers caused by the rux which are not a good thing to have with EPO.

Thinking about it, the real issue is how to keep oxygen saturation levels up in the high 90s.

After all, that’s what the haematocrit/haemoglobin content of blood is there to do.

Mine are bumping around the low 90s at the moment which I guess explains the brain fog.

I’m hoping to maybe transfer my care in the south of England to the Marsden in Sutton, (Guys isn’t on the cards) and as I’m likely to be living in Edinburgh later on , I’ve succeeded in booking a private consultation with Mark Drummond, who is a well reputed MPN specialist in Scotland. But not till early August 😢

I think a change of haematologists is probably going to be the only way I can get a fresh view of what might help me best – there are new drugs for MF around, but my current haematologist won’t consider them. I’d hoped, earlier in the year, when fedratinib was approved and funded, that that might well be a good solution. But no dice.

Anyway, thank you all for being there. It helps to have people who understand the UK health system and also people who are part of other systems

I’m inclined to agree with Inca that the French seem to have it more or less right – my experience with the French healthcare system (when I had a skiing injury years ago) was that I was treated as a sensible adult, and offered choices. I have an elderly sister living in Paris, and if the worst comes to the worst, I might even consider seeing if she could help me organise a consultation with one of the excellent French haematologists but I can’t quite cope with the hassle of attempting to do that.right now.

England is beautiful in the summer: I visited an open garden on Friday and it cheered me up If I can make it work I’ll post a photo

[hunter5582]

It sounds like an excellent plan moving forward. Given what you described, I cannot imagine why other treatment options are not already on the table. Getting a fresh view/second opinion from a MPN Specialist is an excellent idea.

It is a very good thing that you are prevailing in accessing your medical records. Too bad it was so much work, but work well worth the effort. Hopefully everyone will do the same thing as you in healthcare systems that do not provide ready access to records.

Love the picture from the open garden. That is a great way to lift spirits. We all need to find a way to have fun and enjoyment every day.

ALl the best my friend.

[Inca]

You made it work Rachel,lovely photo. Best Wishes.Sally