I was diagnosed with Polycythemia Vera in 2002 but I feel I have had it for many years before diagnosis due to the core symptoms of being a hot sleeper at night, itchy skin, muscle cramps, lots of nose bleeds and easy bleeding since I was as young as 15 years old, and I am now currently 60 years old.

The reason it was diagnosed was due to my suffering severe muscle cramps all my life. I have presented to numerous doctors to try a find the cause of these cramps with everyone prescribing salt tablets to many other things but being the newness, understanding of the disease at that time, no one ever was able to diagnose the root cause.

Being a very fast sprinter in my school years and when I was 15/18 years old, I recorded the fastest sprint records in Australia for my age group and was only .9 of a second outside the Olympic world record for the men’s 200m. In 1981, after winning the 100m, 200m, and 400m races at our GPS school level track and field meeting, that night I had extremely severe cramps in the front and back of my upper leg muscles in both legs simultaneously.

High Polycythemia hemaglobin levels help increase the oxygen levels being carried around your body much as the same as athletes using high altitude athlete training hence allowing me to run fast.

In 2002 I was working as a scuba diving instructor in Cairns North Qld and had to perform an in-water rescue on a panicky scuba diver which due to the advanced sea state ended up with me getting cramps in both my legs simultaneously, embarrassingly I nearly drowned saving the person and had to be rescued myself. This was the catalyst for me really pursuing diagnosis and treatment.

Luckily, I was able to find a doctor who specialised in sports medicine, and he was extremely interested to find the cause of the cramps. After much research he came upon Polycythemia Rubra Vera as it was known then, I had a bone marrow biopsy to confirm this, JAK 2 mutated.

The oncologist due to the current available medical knowledge gave me 2-3 years max to live but here I am 22 years later.
After five venesections in seven days when first diagnosed to get my haemoglobin/hematocrit levels down to acceptable levels I currently have a venesection about every 6 weeks to keep it within range and don’t have to take any medication.
I suffer from the following symptoms:
Severe cramps since 15 years old.
Ruddy skin on my face.
Itchy skin especially after a shower.
High body temperature especially at night.
Bleeding from gums.
Enlarged bruising areas.
Occasional chest pain.
I cut and bleed very easily.
Gout and arthritis pain.
Pain in right foot toe and ball of same foot.
High Hematocrit and Haemoglobin levels.
Numbness and tingling in arms and legs.
Severe Raynaud’s syndrome

The other not much talked about symptoms are the mental health issues living with this condition, after many hundreds of cuts and bruises over the years due to my fragile skin I have developed severe Trypanophobia which is not ideal for someone who needs venesections, however after treatment with ACT therapy and can now keep my BP under control when having a venesection.

Dealing with this type of terminal cancer is hard especially when it’s such a varying unknown time frame for each individual.
My PV is now controlled with the venesections only, and the main indicators of requiring a venesection are the ruddy skin on face and cramps.
I hope my story will give everyone who has this disease some hope that most people will live for many years and the research keeps getting reviewed and a better prognosis all the time.

aged 60 years, 2024

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