Welp, it’s been almost a year since I updated this sucker apparently. A lot has happened this summer, I almost died from complications to a hysterectomy and I’m still dealing with medical problems 2 months later.
I had a complete hysterectomy scheduled for July 18. My best friend came with me because my mom didn’t want to come, which really upset me. But more about that in a bit. The surgery itself was a success, but during the surgery my surgeon nicked my bladder. Apparently this is a known risk for a hysterectomy (regarding the potential lawsuit I’m trying to put together) and so my surgeon figured this out right away (they run a camera through the bladder at the end of the hysto to make sure it’s not been nicked) and he called the urology team in to repair it. Apparently it took them a few tries, and then they ran a dye called methelyne (sp?) blue through my kidneys. Well it turns out that particular dye does not interact well with psych meds, which I was on quite a heavy dose. My psychologist works at this same hospital so I know my med list was there for them. I developed what’s called Seratonin Syndrome, and my kidneys failed. I was put on a ventilator and dialysis for 72 hours (don’t know how long I was on the ventilator for). I completely lost a week and a half, although I do remember some of my halleucinations, and I remember trying to bite the staff members so they had to sedate and restrain me.
When I came to on July 27th, I thought I was in Florida lol. My brother had come to the hospital (he lives in Miami but he was up visiting our parents) and for some reason seeing him in my delirium made me think I was in Florida. Now I can laugh about it but at the time I was really confused and didn’t know that I was in the hospital. When I came to I couldn’t read or write and had a really hard time putting sentences together to talk to people. An occupational therapist started working with me right away and slowly it came back. After a second week in a step down unit (first week was in ICU) they sent me to the rehab that’s in a different building of the hospital where I received PT and OT for a week before being discharged home.
I was sent home with a catheter in that I had to have for 7 FUCKING WEEKS in order for my bladder to heal. It was the worst thing ever I can’t even begin to explain how terrible it was. Right from the start I was leaking urine from around the catheter site (coming out of my vagina) and I had to start wearing adult diapers. I’m STILL wearing adult diapers because I’m still leaking non-stop. My surgeon said I have a fistula. I’ve had 4 imaging studies done and not one has shown a fistula, so I’m seeking a second opinion next Monday at a different hospital with an urologist who specializes in female anatomy. This whole thing is also kind of making me dysphoric.
I got a UTI with chills and a fever while in rehab and it was most likely due to the catheter. After being home for about a week, I started to notice blood in my urine. I called my urologist and they said it was probably just from all the walking I do (I don’t have a car and take public transportation so I walk a lot) and the catheter rubbing against my urethra or whatever, so just drink more water and flush it out. Well a few days later I woke up with excrutiating pain in my abdomen and back right where my kidney is. I tried to deal with it throughout the day and ended up going to the emergency room that afternoon. They said I had another UTI and they kept me overnight for observation, gave me a dose of IV antibiotics and sent me home with a prescription for antibiotics. I took them for a full week, my urine was so full of blood it was almost black at times and a week later I started having chills again and back pain so I ended up at a different ER and they said I had a dual kidney infection and that the UTI had spread to my kidneys. They kept me for 4 days and gave me 9 rounds of IV antibiotics. I then took a different antibiotic for 10 days and FINALLY everything cleared up (I also got the catheter taken out right after that hospital stay).
So about my mom, right? She refused to take time off from work even though I had given her plenty of advanced notice and that really hurt because I felt she didn’t want to come because it was related to me being trans. Well when I was in the ICU, my surgeon said she and my dad and my brother were there every single day. They drove 2.5 hours each way and went home and came back the next day. Then once I got moved to the step down unit they came ever 2-3 days (she did have to work). It’s really changed our relationship (me almost dying…) and it sucks it had to come to this but I’m really happy. We talk almost every day now and things seem so much better.
This summer has really sucked. Like, really. Sucked. I didn’t get to the beach once, and I didn’t get to Six Flags once. Those two things are my summer goals to get to each at least once. And there’s a new roller coaster at Six Flags this year, The Joker, which I totally want to check out but I’m going to have to wait until next summer. Oh well, it will still be there. I did get to do a musical over the past 2 weeks, my surgeon said I could start playing the week rehearsal started. So add Evita to the list of shows I’ve done. It was a lot of fun, and although I may have to cancel because I might need more surgery regarding the fistula, I’m supposed to do Chicago at the end of October which I really want to do plus my friend is playing Velma. So yeah, that’s what’s been going on over the past few months. A lot more has happened, most importantly I graduated with my masters in May! Just need to get a frame for my diploma. Oh and on July 27th I celebrated 4 years clean and sober 🙂