I was diagnosed with Essential Thrombocythemia in 1994 at age 32. I was very ill prior to diagnosis. My symptoms were migraines, dizzy spells, fatigue, pneumonia, bone pain – and more. It was difficult to find a doctor who would investigate my symptoms. Over one year, I saw five doctors. I was diagnosed with Chronic Fatigue Syndrome, Obesity, Post Natal Depression and Pneumonia. I was collectively told that if I lost weight and exercised more, all my symptoms would disappear. They did not – and they became progressively worse.
A friend recommended a doctor who she felt would listen to me and I made the appointment to see him immediately. He said if he came up empty handed, he would be referring me to a psychologist. I agreed.
That week was a blur! He drew bloods three times and kept calling to ask questions like “Do you have a cat? Have you been overseas recently?” As the bloodwork started to come back, he called me back and told me there was definitely a problem. My platelets had been rising and there was a trend. He told me he wasn’t sure what was going on – but something definitely was!
I had a bone marrow biopsy and was started on a large dose of Hydrea that day. My platelet count was over 2.3 million. I was told to go home and put my affairs in order, just in case. The following Saturday I had my first stroke. My platelet count was still high. I was told had I not been on the large dose of Hydrea, I most likely wouldn’t be here. There was no gene testing then and transplants were not an option. I had my stem cells harvested and stored, but have since disposed of them as new transplant techniques exist.
Over the next 3-4 years I struggled to come to terms with my diagnosis. I developed lymphedema in my legs and had deficits remaining from my stroke. I continued to work until my mobility became an issue and I had to resign.
Shortly after, in 1998, I had a second stroke. This time my platelet count was only 400. This stroke damaged my eyes and my eyesight has never fully recovered. My specialist and I decided to ensure my platelets stayed under 400 from then on.
I have also suffered with leg ulcers, a common Hydrea side effect. However, I must stress that I didn’t start developing ulcers until over 20 years on Hydrea. I was changed to Pegasys and have had no more leg ulcers since.
As I became more confident in understanding my ET, I retrained as a travel agent and set up my own agency. I juggled work, family alongside my health. I travelled extensively and although it had its moments, like juggling chemo through airports, life found a new normal.
I threw myself into facilitating support groups for MPN patients. I wrote a brochure for the Leukaemia Foundation (LF) for newly diagnosed patients. Then the LF took over facilitating MPN lunches – for which we were all grateful. I made it my mission to ensure no other patient went through this alone. It took 3yrs before I met another patient in person. To this day, I’m still very emotional remembering it!
I changed haematologists in 2023. I wanted a bone marrow biopsy as I’d not had one since 2000. My new specialist agreed and did Next Generation Gene Sequencing. My results showed mild scarring in the marrow – unsurprising after 32 years of hyperactive platelets. It showed I am Triple Negative – ie, I have no JAK2, CALR or MPL mutations.
Despite ups and downs throughout my 32yr journey, I’m still here. I am stable on 45mcg of Pegasys weekly. All days are not sunshine and roses. I struggle with severe bone pain and long-term treatment side effects. However, I’m grateful to have access to treatment.
My biggest message is that you don’t need to struggle through alone. We are a tribe and there are resources available to help. I facilitate an MPN lunch four times a year.
Most importantly, there is life after diagnosis and if my story helps just one person navigating the crazy world of MPN’s, then I have fulfilled my legacy.
