Tested for Polycythaemia

Hi moneab. In ordert o be properly diagnosed, you must be referred to a hematologist. Mine diagnosed me with only a look at me. He then had my blood tested for the jak2 gene mutation. I Tested positive, which means that I have primary PV. (Not caused by external problems such as a tumor). We can live a normal life span with this disease as long as we are treated. Most of the time, I feel well, can work out, go for walks, and do my usual chores around the house. At first, I had phlebotomies,

(about a pint of blood removed every two weeks). Then i was put on HYDroxyurea. It helps prevent the red cells from multiplying so fast, and prevents blood clots, which can be a problem. I don't usually have phlebotomies any more. I am 74, and have been diagnosed for 4 yrs now. Good luck, and don't worry too much. Listen to your Hematologist. THey know what they are doing.  

Harrishill

Hi Moneab.  I would concur with the advice given by Harrishill1.  I would just say that PV can prove difficult initially to diagnose as some contributors to this forum have explained.  It is a question of patience and having confidence in your haematologist.  PV is a very rare disorder needing expert solutions and can affect people differently, particularly over a period of time.  Best wishes.

I have been DX w Polycythaemia  due to high red blood count and Hct. I was told what ever the cause the treatment was same however once we get it under better control I will do the bone marrow test to see which I have. Dr beleives is the mutated  Jak2 gene mutation.

 

From all that I have understood of this disorder harrishill1 has explained it very well. I agree let the blood experts do their thing as they are experts

 

Marty

  Hey man, I know what your going through right now. Im only 25 years old myself (male).  Im also undertaking a few test. They noticed my Hemoglobin was at 20.8 and now they think i have Polycythemia. Im still sitting here waiting to hear if i have the secondary type or the Primary. I had a few test done yesterday but since then all i have been doing is worryng.

  I know what your thinking, Im to young for this, why do i have to go through this at my age, its not fair. And i agree man, it sucks. But what ive learned since being here, is that this community is very supportive. Ask any questions, vent a bit. People respond in kind.

  Have you been having any symptons? Such as being very tierd, stomach aches, Dizzy, etc? I had fatigue at first. When they drained me the first tme though, the next day was horrible. They say it gets better though.

  The main thing young guys like us need to do though man, is have faith and stay positive.