Hello,
All good wishes to everyone.
I'm looking for information on what a good medical team/pathway looks like for my brother who has Polycythemia Rubra Vera and Portal vein thrombosis, diagnosed 3 years ago at the age of 45.
My brother is very unwell and has been in hospital for 7 weeks, with unknown prognosis, he just isn't recovering from his most recent surgery. He had a partial splenectomy 7 weeks ago and is still on his back in hospital due to infections and ascites and heart racing issues. Does anyone have experience of what a good medical team looks like. For example, my brother is under a Hepatologist, but not a Haematologist. He is seriously unwell and has lost 4 stones in 5 weeks. I am very worried about him. He has been bedridden for 7 weeks. What hospitals are the best ones to get under the care of? I won't say what one he is in, but he feels isolated and abandoned by his consultant and there is no specific blood cancer support.
Thank you for reading and for any advice you can share.
P
Hi Polly Cynthia Vera and welcome to the Online Community but so sorry to hear about your brothers diagnosis.
A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you consider joining and posting in our supportive MDS/MPN/ET/PV/myelofibrosis (MF) support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same journey.
To join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.
Do get back to me if you need further help navigating the community.
