VivL aged 69
Despite months of severe headaches which I went to my GP about, nothing was done until I had a transient ischaemic attack accompanied with numbness and tingling in my right arm and face. I was 39, very fit, played squash 2 or 3 times a week, swam every morning and walked the dog every night. The two GP’s in the practice gave me maxalon to stop the vomiting, patted me on the head and told me I was a stressed out middle aged housewife and to go home and have a drink.
As we moved states a lot at that time, I had consultations with two separate neurologists, neither of which helped with the headaches. On one occasion my husband came with me to our GP in Sydney and said to her “if you had these headaches every day you would find a solution”. I had a history of migraines but these headaches were mammoth and it took from 1992 to 2000 for someone to sit and listen and take me seriously. At that point I was introduced to Endep, which in an incidental finding had been found to relieve really bad headaches. Bingo! just like that they were under control for the first time in a long time.
It was a relief to have a definitive result and know there was something causing the headaches and not my imagination as suggested by my GP’s. It would also be worth noting once my GP practice found out I was actually unwell with an MPN they wouldn’t treat me and I didn’t give them any cause to believe I would blame them for the extended patronising behaviour.
I was referred to a Haematologist in Brisbane who started me on a drug called Busulophan (also called Myleran). At that time an interferon, RoferonA had just come onto the market but I was told it wasn’t available to me due to cost issues. The haematologist said, “you have about 20 years so enjoy it” he was blunt and unsympathetic.
Despite many challenges I tell myself to just keep going, you may feel worse tomorrow so get on with it all today. It sounds trite but it has worked for me so far. As I have progressed and had different treatments that has been a challenge. I have a fabulous GP now and she makes it her task to understand what my current treatment is and how it will affect me. She puts out the spot fires as they occur and if necessary speaks to my Haematologist.
My husband and adult daughter are fabulous in supporting me with the MPN. My adult son doesn’t like anything medical, if you need a hole dug, a load of wood, lawns mowed then he’s your man but get sick and you’re on your own! Mostly my work colleagues don’t want to know what you have as long as it’s not contagious. From 2001 to 2018 I was running my own seven-day a week business but had great staff who could hop in if I went down in a heap.
Recently it was confirmed that the MPN has changed to MF which was difficult to hear, and I just got really mad at karma or mother nature or God for giving someone like me a blood disorder given the degree of difficulty in accessing them. I know that just need to hang on and hope Jakavi will hold me until about this time next year when my Haematologist told me three new treatments come onto the market which may be a suitable treatment option. The only other option right now is a bone marrow transplant and I am very aware of the statistics on longevity following them so will do exactly as I’m told in order to not have one.
With an MPN your life isn’t over you just have to manage what you have.