Kimberley R age 37
In 2010, at the age 26, following the birth of my son I suffered a major deep vein thrombosis (DVT) and multiple pulmonary embolisms – clots in my lungs. I had to stay in hospital for several weeks, during which time I suffered a further two DVTs in my right leg. I also developed vision loss in my eye and was told it was a small blood clot.
At that time, because I developed post thrombotic syndrome in my right leg, my quality of life was ruined and I experienced so much upset and anxiety. In 2019 I underwent three months of medical investigations including being referred to a haematologist because my platelets had been rising for six years. Early in 2020 it was confirmed that I had essential thrombocythaemia (ET) and was prescribed chemotherapy medicine and had my own specialist MPN nurse to talk to!
It was such a relief after years of knowing I wasn’t well. When I opened my ET booklet I found that every single symptom was a list of my symptoms! For many years I had been to the doctor so many times for these symptoms! Even at 10 years old I was investigated for leukaemia because I was always so poorly but got diagnosed with M.E. by the local children’s hospital. So it was an absolute relief finally I knew what was making me feel this way.
Because of my history of clots I was put on daily hydroxycarbamide which was doubled at weekends. At first it made me very nauseous but now I’m used to the medication and tolerating it and my platelet count is gradually falling.
I’ve had so much support from my lovely family and husband and son everyone is so helpful when I’m not feeling well. My work friends are also very supportive if I’m poorly and so helpful with hospital appointments or anything I need.
I turned to MPN Voice as soon as I was diagnosed and it was so helpful to read all the stories. I am now being closely monitored and feel so lucky to have been diagnosed before something bad happened.