32F & coping with the uncertainty, lack of information, prognosis
I am 32F, diagnosed with ET about 7 years ago after routine labwork showed platelets at 1,500. Bone marrow biopsy & I have the CAL-R. I do not respond well to Hydrea but it is the only option as I can't risk the possible effects the injections have on mental health. But Hydrea is like throwing a water bottle at a house fire for me. I even had to have a second bone marrow biopsy because the Hydrea was so ineffective, my Drs didn't think I was taking it. So that was fun. Later there was another oncologist who explained that the effect the Hydrea has on my red blood cells shows that I was, of course, taking it...
Anyway, the discouraging nature of this illness makes me question whether I should let myself dream, specifically, of having a family of my own. I'm single, but I'm at an age where I really need to consider these things, and there are so many variables to consider that it's just overwhelming. The risks it carries- from miscarriage and blood loss during labor, to the fatigue I would face, and God forbid I do have children, and my illness progresses then.
Who knows. If only there was more information about prognosis, especially for those under the age of 60, that would really have meant a lot.