Melanie C aged 55.
In March 2020 I had difficulty breathing and was admitted twice to hospital within four days. This was likely the result of a deep vein thrombosis, possibly not the first and resulting in a diagnosis of having had massive pulmonary embolisms for which I was put on blood thinners.
Following this I had a long call from my doctor to discuss what had happened and blood tests were ordered after my GP had spoken to the haematology department. The result came back as Jak 2 positive.
Because of Covid 19 restrictions, in 2021 I spoke to a Haematologist Consultant over the telephone who ordered a bone marrow biopsy which I asked to have done as soon as possible as I was in shock with everything that had happened over the previous few months, including the hospital admissions.
I had my biopsy including bone marrow, which was done as a hospital stay because the gas and air had made me ill with nausea and severe vomiting.
The results confirmed that I had Essential Thrombocythaemia, it’s likely that I had had it since 2011 as in my annual check up my platelets were high, but the doctors thought it was inflammation which my body was fighting.
I attended a hospital appointment to start Hydroxycarbamide, which I currently take three times a week. Every month I have a blood test on a Monday and a telephone appointment on a Friday. I have been gradually increasing the dose of hydroxycarbamide. I may end up on Interferon, but as I already suffer from anxiety and depression the consultant is holding off at the moment.
My platelet count is reducing, but because I am freckly and ‘moley’, I am concerned about the long-term use of hydroxycarbamide and know I need to be careful in the sun.
Unfortunately, I have just had my eighth hospital admission, the last due to pneumonia, where I had to have a chest drain in. With treatment of blood thinners for life and hydroxycarbamide, I am a high-risk patient and I hope that there may be an opportunity to try Pegasys when life is more settled.
This last year has been a roller-coaster!