My Diagnosis and Living with Polycythemia Vera

Last updated: September 2023

I’m Nathan, I'm 47 years of age, and I was diagnosed with polycythemia vera in 2020, 2 years ago. I live in Sydney, Australia. I was in my prime in life I was working hard and was working on my lifestyle. Eating well and working on my fitness. I lost 30kgs and ran half marathons prior covid. I was loving life.

Covid closed up Australia and my gym had closed. My trainer took her classes outdoors at the park. I was enjoying something different. After a few months, my fitness was declining rapidly. I and my trainer thought I was doing to much, I couldn’t keep up with the group anymore and I was struggling to breathe. I knew something wasn’t right. You know your body and I knew something was wrong. 6 months later gyms started opening up so I went to the gym lifting weights. My training was steady. Then one particular day I felt some chest pain. I thought it might go away but it didn’t.

Diagnosed with PV

My wife took me to the hospital there were lots of doctors and nurses asking lots of questions. I was given some Ntg and in seconds the pressure went away. There were lots of tests which were ok. I was discharged and referred to a cardiologist where I couldn’t do a stress test. I had no energy and was out of breath. The doctor wanted me in the hospital 2 days later with an angiogram,

Angiogram completed with the doctor saying that I had one of the healthiest hearts he had seen in a long time.
He said my blood was sticky and thick. My gp sends me off to a hematologist and tests me for polycythemia. I received my results from the cancer clinic here in Miranda Australia near where I live.

I was scared because I knew I would be positive for this disease. And there it was. Positive my red blood cells were at 64% when they should be around 45%. Days later I was taken in for a venesection which I was used to because I have Haemochromatosis too and high iron. I give blood to the Australian Red Cross once every 3 months for 13 years. I was referred to another hematologist at the local hospital and was doing weekly venesections in oncology with other cancer patients.

World turned upside down

By this stage, my world was turned upside down. I couldn’t believe my fitness and health were taken away from me.
After 6 months I dealt with it and accepted. Going through the process of listening to doctors. During this time through being diagnosed up until 3 months ago I was feeling very sick with hangover symptoms no energy, itchy and depressed still going to work 90% of the time, really didn’t think that I was going to get better.
I was on Hu chemo for 6 months.

I had so many friends worried and said go get a second opinion. So I called a professor that I had seen for my Haemochromatosis. Honestly thought he would have retired it was a long time ago since I had seen him. I called his clinic and he saw me straight away. I was in his clinic for an hour he was so helpful. He was more helpful than the doctors I was seeing in the hospital.

What a journey

In November last year, I was offered Interferon pegasys taking it weekly through injections which my gp does for me. Now in February, I feel so good improving every week. I have a normal blood count and I’m feeling so much better. No more hangover feeling clear head a little itching but that’s ok I can treat that with beta analine.

What a journey I was on my knees struggling for help. My best advice is if you're not happy with your progress or the doctor gets a second opinion. I was so disappointed but don’t look back I’m looking forward to the future again. So I’m on blood pressure tablets and Cartia 100mg aspirin. I can’t wait to do more exercise because I’ve put on 30kg. I wish there was more info for newly diagnosed people. I have reached out to Facebook pages and that has been a blessing.

Thank you for reading my story.

Nathan

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