Needing help understanding ET and how it affects my life
I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16 (and by “high” I mean 800,000 to 900,000). I found out donating blood, and now I’m a deferred donor because of this blood issue. I had a doctors appointment around the same time and the doctor ordered my blood work to be redone because they thought they had mishandled it because the readings were high. All of my other blood work is fine. The doctor told my dad to take me to the children’s hospital in Dallas, but he never did. I haven’t been able to afford health insurance, so I wasn’t able to get my platelets checked again until about three years ago. I got yet another referral to a cancer center, but because I didn’t have insurance at that time either they refused to make me an appointment. I finally got insurance through my job and tried again this year, but the cancer center doesn’t take my insurance and I can’t afford to pay $500 per visit not including testing. I highly expect to need a bone marrow biopsy. Over the past couple years I’ve noticed I’m getting sicker. It takes longer for me to recover than everyone around me. My spleen gets uncomfortable sometimes, but conveniently not when I actually have an appointment. I don’t know what to do. I’m so anxious about living with this disorder and not being able to afford to even properly get diagnosed let alone manage it. I’m worried if I somehow get the money to get a diagnosis that it will be harder to get on insurance because it’s a type of cancer. Does anyone have any advice for managing this without being able to see a doctor? Or any advice on resources I could possibly use to help me be able to see the specialist I need to? I’m in Texas if that helps.