Polycythemia, anyone else, help, advice?

Posted by: MW on 23 December 2017

My GP has just referred me to a haematologist as the numerous blood tests indicate this, and it is on top of atrial fibrillation that started in June, not feeling very lucky at the moment. The GP phoned me on Wednesday to say she was arranging an urgent referral, but the appointment recieved for mid March. That doesn't feel urgent, but I know i am the one who is worried. The symptoms I am experiencing are very unpleasant, such good timing as Christmas shuts the medical shop.

Posted on: 23 December 2017 by Kiwi cat

Do you have the option of seeing a private haematologist? 

Posted on: 23 December 2017 by Clemenza

Sorry to hear this man. This is jolting news to receive. My wife's aunt was diagnosed with Polycythemia Vera at a late age and with treatment lived 15 years beyond diagnosis. She was elderly when she passed, so it is something that can be treated for quite some time potentially, but I'm sure this is small consolation to you when facing the thought of a future with it. We weren't privy to the details of her treatment plan so I'm sorry I can't offer any advice there on avenues to pursue or what to expect. It would probably be mostly irrelevant now anyway because her aunt passed over a decade ago. Things have probably changed so much in the intervening years that Google could tell you more than I can.

All I can offer is my best wishes MW, I hope the diagnostic process leads to a treatment plan that brings you some relief. It sounds like the symptoms you have are frightening, to say the least.

Posted on: 23 December 2017 by Kiwi cat

I was also thinking that perhaps in the new year you could revisit your GP.Depending on your symptoms, she may be able to get advice from the local hospital haematologist regarding treatment. For example there may be some medication you get get started on, and perhaps under medical supervision, you could have a couple of units of blood taken off, to relieve your symptoms whilst you are waiting to be seen by the specialist. All the best for the new year and I hope it works out well for you.

Posted on: 24 December 2017 by Massimo Bertola

I am very sorry to hear this, but if you share the news on a HiFi forum, perhaps all I can say is, if you can allow the system you have, perhaps you can allow to be seen by a private hematologist at least once, before March. Sorry if I sound cynic, I am being not. I am also sorry to read that your teenage son is giving you problems. 

Posted on: 24 December 2017 by MW

Thanks for the replies. i've spoken to another GP who thinks the wait time considering the symptoms is too long, and I need to request a sooner appointment. Looks like I'll ask for a private referral later this week, Christmas present to myself!

Posted on: 25 December 2017 by Matty.s

All the very best.