Polycythemia vera

[ArseholeCatIsABlackAndWhiteCat]

I know I am AIBU as I'm only posting for traffic.

Has anyone been diagnosed with this disease or has real life experience/information/advice about it?

OH has a confirmed diagnosis from A&E. he has had a venesection already, booked for two more.

We are waiting for more blood tests results to come in and an actual appointment with the haematology clinic.

Information online looks scary , it is defined as blood cancer/rare blood disease. I'm spiralling and looking for information and a hand hold as I'm keeping all calm and upbeat for him. He hasn't googled it but it is taking a toll as he has sever pain in his legs, has been off work and generally going bonkers from not doing much and boredom.

Also I worry how he'll take it if they do mention those words at the appointment and how it will further affect him. As far as he's concerned ,at the moment, his blood is just a bit thick and they're sorting it out.

Anyone?

Hello OP
I’m sorry to hear your OH has this.
Hopefully I can help.
A close family relative has polycythemia. I need to be vigilant for the future as my haematocrit level is also over the threshold.
He has found that it is a disease that can be managed through vena sections and lifestyle adjustments. Blood tests need to be conducted regularly to ensure haematocrit has reduced. Aspirin is taken as a blood thinner. Plenty of water to keep blood healthy.
My relative was diagnosed over 20 years ago! The main side effect is fatigue.
I hope this has offered a little reassurance and wish your OH all the best.

He was also advised to avoid / cut down iron rich foods.

Thank you , that's reassuring. Obviously we're just at the start of this. Trying to keep calm ,ignore the "bad" words and just (im)patiently waiting for the blood tests and hoping it's "just" this and nothing worse.

Exh has Polycythaemia Vera, I think he must have been diagnosed more than 20 years now. He has taken Hydroxyurea (chemotherapy tablet) for more than fifteen years now alongside aspirin. His spleen is very enlarged and his liver enzymes are always very high. He is often tired and lethargic. Currently his bloods are more out of synch than usual, his platelets white blood count and neuthrophils are all low so they are adjusting medication to see if it alters things. Exh would have been early 40's when he was diagnosed and seemed to be twenty years younger than most at the hospital clinic which he found reassuring back then.

How is your OH getting on since their diagnosis? I was diagnosed in 2016 at the age of 44 with no real symptoms as a result of a routine blood test. I found the 'C' word incredibly scary and took a while to come to terms with the diagnosis. At first it was managed with venesections and aspirin but I now take Hydroxyurea and have done for several years mainly due to not coping well with the venesections. It took a while for side effects of the meds to settle down, I know it doesn't suit everyone but I'm lucky I am now fine on it.

I mainly don't really think about my condition, the medication does a good job of controlling my blood levels and I now have 3 monthly checks and tweak the dosage depending on blood results. I'm tired a lot (but also menopausal!) but otherwise quite well.

One thing to mention is if you have a mortgage and critical illness cover it should kick in. Something worth checking.

What were your levels on diagnosis please anyone