I'm in a serious catch and idk what to do. I'm completely homebound because of Covid and lack of resources I need as a germaphobe with OCD. I'm not even sure how to organize this, so I apologize in advance if it's confusing. You can ask me questions if you need clarification.
he/him or they/them pronouns only
CW: awful doctors, blood clots, needles, misgendering/transphobia, hell week mention, ableism
So I take testosterone in gel form, and I have a blood disorder called factor V leiden, in which I'm at risk of blood clots. That means monthly blood tests, and when my hematocrit gets too high due to the T, I require a phlebotomy (bloodletting, yay!) I was fairly homebound before covid, for details I don't want to get into, and had been asking my hematologist for months for help in setting up blood tests and phlebotomies from home. He told ME to find an agency and run it through insurance. So I did that. He put it off for two months to fill out the prior auth form which in the end wasn't even needed (and seriously went on to say he never got it while I was literally there when they printed it out. I HELPED them find and print it.) This entire time, I haven't been able to get a blood test or phlebotomy. My hematologist hasn't pulled through. Last I spoke with him in early May, he very unsympathetically told me "I know you don't want to hear this, but maybe you should just endure hell week (except he just phrased it like 'bleed') and lower my dose of T in response to me telling him I had already lowered my T as much as I could. He has NOT helped me with figuring out a solution here, and his office takes forever to get back to my insurance case manager. He even misgendered me during the phone appointment, and has done so repeatedly in office, IN FRONT OF OTHER PATIENTS.
My primary care doctor worked it out so I could do a blood test from home (by doing it MYSELF. Yes, I stuck myself repeatedly until I filled their vials and had someone return the blood to them. It wasn't a terrible experience but it's not one I should have had to go through, and I'm gonna have to do that EVERY MONTH) but he understandably doesn't want me doing a phlebotomy myself. I got the results back from that test, and my hematocrit is 53.3%, and my hematologist says 54% and above, I'm at risk of a clot. I'm REALLY CLOSE HERE! By my test next month, I could have already died of a clot. He was once again unsympathetic and will not help. My primary care doctor won't help this time because he feels this is something best left for said hematologist. So while he'll continue to provide home test kits for me, everything else is out of his hands and is left up to the hematologist who refuses to do anything because I'm "not at risk YET". At this point, my mom thinks he might be doing this on purpose. He's literally waiting for me to cross into that threshold where I can get a blood clot. He's really waiting for me to die.
My caseworker was supposed to be finding alternatives in my county as far as home testing and phlebotomy, but she told my insurance case manager that she had talked to me about phlebotomy from inside my car (1. She didn't. 2. It's not possible. 3. She talked to my mom about tests that way, back in FEB and my mom told her IT'S NOT POSSIBLE) and she was very disrespectful when she did speak to me (via text. writing my entire experience off as willingness. When I told her not to do that because it's ableist, she didn't bother to respond at all and I haven't heard from her since) Just like every otherΒ caseworker I've had, she's not interested in helping me. By lying to my insurance, I could have died. If I hadn't called my insurance worker, I would have never known, and my insurance worker would have thought I found a solution and would have stopped looking for alternatives.
Finding a new hematologist is going to take more time than I have. I DESPERATELY need a phlebotomy IN MY HOME. I CANNOT leave. I can't keep skipping T. I need it. My hormones are all over the place and it's making me really depressed, even more than my toxic environment and covid and everything going on inside and outside my personal life. I don't need hormone fluctuation to add to it. I can NOT afford another hell week. It's torture for more than just the bleeding. I need my T and I need a phlebotomy from home. And I'm at a point where I want to take legal action against my hematologist if I can because I'm fed up with how he's treating me. I can't take this anymore. I NEED SOMEONE TO FIGHT FOR ME. MY LIFE SHOULD MATTER! MY HEALTH SHOULD MATTER! MY TRANSITION SHOULD MATTER! ππππππππ