I'd initially written a much longer post, but I thought better of posting such a deeply personal story to a public forum, even on a throwaway account. The tl;dr version of the worst experience of my life is this: I got phallo with Dr. Cripps at UChicago (highly recommend her and the hospital btw, despite everything that happened to me). Surgery went well initially, and then I had some bad swelling, so they put me back in the OR for exploration and found a couple disparate blood clots on day 4 (they were able to save it then). Then we took healing very slowly and carefully, and I was looking up, but a major clot suddenly appeared in my thigh on day 11, and my penis died so quickly that there was really no saving it. So instead of the planned 5-day inpatient stay, 9-day stay in an AirBnB, and adjusting to a new penis; I got a 14-day inpatient stay, a lot of trauma, and no penis.
Preliminary testing suggests that I have APLS/APS/antiphospholipid syndrome, though we'll need further testing to confirm. Definitely some kind of heretofore undiagnosed clotting disorder, though.
I'm heartbroken, obviously. Bitter, angry, sad, hopeless, alone. Afraid that the doors will close on my access before I'll be able to do this again, or that whatever mystery condition I have may make it impossible, or that I might just not have it in me. And useless, too, because I'm still healing and even putting on jeans is a daunting task. I find myself close to tears, but not quite able to cry, a lot.
I'm not suicidal - my mental health at baseline is actually pretty good these days, almost like transition saved my life or something, wow, who'd've thunk - but I almost wish I was bad off enough to be suicidal, because then maybe I'd be dead, and the thing about being dead is that if you're dead, then you aren't hurting anymore. And I really don't want to hurt anymore.
I'm going to keep moving forward, though. I've been through too much bullshit to let this kill me. As long as I keep moving, there's still hope, right?
I'll heal from this, and we can figure out what happened and why, and we can determine where to go from there. My thighs are thick, so that might mean double RFF for me, and I've at least heard of that happening, though the idea of bilateral RFF scars is really daunting right now, with me having one that's still healing and that therefore feels godawful.
I'd love to hear from anyone else who's been through this or knows someone who has, especially if they went through with double RFF, or did ALT despite large thighs, or have the same clotting disorder we're thinking I have.
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except for when he makes my life a living hell on a daily basis. P.S. Please don’t say anything bad about him. P.P.S. He’s not abusive, he just has ADHD. P.P.P.S. Please don’t suggest divorce. He only shit in my cereal that one time.” 
