Hi everyone,
I was diagnosed with Essential thrombocythemia (ET) with an MPL mutation, and early-stage myelofibrosis. It took a long time to reach this point. It started with suspected IBD, then liver cirrhosis, fibrosis, portal hypertension, and eventually splenomegaly and varices. Only after all that did my blood work and a bone marrow biopsy finally lead to the Essential thrombocythemia (ET) and early stage myleofibrosis diagnosis. My platelets about 18 months back were 700 or so but I think due to lifestyle changes I made, they came down and are holding at an average of 400. I do bi weekly blood tests, with another biopsy scheduled and I’m adding different elements back into my life like swimming, regular walking and light jogging. Irrespective of the daily symptoms of fatigue, Tummy issues, itching, and the work life balance juggle, I seem to find a path each day to get through it, so I think I’m ok in terms of my health.
Because I’ve had a clot in my portal vein, and the complexity of my situation, my specialist is keen to start Ro-PEG treatment. I’ve chosen to pause starting treatment for now. I feel relatively strong in myself.
Of course, making a decision like this is a chicken and egg feeling, short term I might be ok but not knowing the long term consequences is the risk feeling. Have any of you ever made the decision to delay starting Ro-PEG or another treatment? Did it work out, or do you wish you’d handled it differently?
I know we’re all on our own path, but I’d love to learn from the moments when others made big decisions. what helped, what you learned, and what you’d share with someone else facing a similar situation.
Lastly, and maybe hardest to say, I’ve felt quite alone in all of this. My wife is incredible, but my siblings have been distant, and the hurt of this has been heavier than I expected. has experienced that family disconnect?
Thanks for reading.
Take care
Jon .