The surgeon that removed my wife's spleen on the 2 may saw us on Friday to check she was doing well. He is a very nice man. He phoned the hematologist to check if he had any results on the tests he ran.
We saw the hematologist today. My wife is JAK positive and has an MPN though still not diagnosed as to which one. The hematologist reckons it is Myelofibrosis but either, other test results are not in or it will not be decided until 2 July by a meeting of himself and others, (didn't quite understand, being in French and Franglais)
We really want to get back home to Wales as the holiday is well overrun. So he will be emailing me the full diagnosis and has given me his mobile number and the MRI scan CD and all documentation. We pick up more drugs Tomorrow, and will make are way back home at the end of the week. Just hope the GP in Wales is up to the mark. Is there any advice anyone can offer in dealing with this MPN
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I also live in Wales and have MF. My advice would be to get a good haematologist. So far as i know, the best place to go is Cardiff if that's remotely practical for you. Good luck.
Hi jane13. We live in North East Wales, so Cardiff is not to be considered. May I ask if, once you have a hematologist assigned to you, do you have to go through your GP each time you have a question or concern? Or can you contact the hematologist directly?
I contact my haem directly via his email or his pa, some have a specialist nurse u can contact. It shouldn't be a problem. I deal with my GP for some issues like pain killers for bone pain. My previous haem was less open to contact but I used to just phone his pa anyway. It may be a toss-up between the convenience of your local DGH, but no specialist care, and a bigger centre (Liverpool???) that has a specialist team. Some places have an excellent network between the specialist centre and the DGH so u get the best of both worlds, but I doubt that's the case in NE Wales (boundary issues). Maybe have a chat with yr GP?
Hi Jane. Re haemo. In Wales. I went for a second. Opinion to a specialist haemo. In Cardiff and he told me I would get as much support and advice from MPN Voice and that there was nothing useful he could tell me! Just thought I'd mention it. Mary
Fair enough. When I had PV and everything was fairly stable, I was happy with the local DGH, but once I got MF at the higher risk end I wanted a specialist!
I hope you get home safely, it will be such a relief to be on home soil albeit with some apprehension. Advice on your wife's MPN will very much depend on the final diagnosis as MF is apart from ET and PV , a bit like a step on though the symptoms , if any in an early stage can be managed by drugs. One is an enlarged spleen which has been taken out in your wife's case so I don't know if there will be any implications from that.
You need to get the diagnosis and as Jane says try and see a specialist Haematologist.
Hi, I can understand that you are both wanting to be back in Wales. When you get back you will need to speak to the GP straight away so that a referral can be made to a haematologist. Have a read of the information we have on our website about MPNs,
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Almost 1 yr on Peg - Update
Sitting here in the waiting room..
