Dear Friends, I am sure you are all wondering why I went to Serbia for a single day, and what the hell happened to me there. Well, here we go:
The long story short:
- Saw a surgeon in Belgrade because I was worried if I didn’t go from Europe and drop a shit ton of money on airfare to see him on short notice, the entire process of getting him to operate on me would never move forward at all. I was right.
- My doctors in New York had not coordinated with this surgeon AT ALL despite having suggested they had, and even suggesting I was supposed to have had surgery next week by him when he visited New York.
- The surgeon wants $3500 to operate on me at his office in Belgrade, the soonest this could be is October. There is no guarantee he can fix everything that is wrong, but he will do what he can. This figure does not include other expenses I’d incur, none the least of which the $800 I spent to change all my fights around in a single night to see him at all.
- I do not have $3500+, and I am applying for jobs right now that would make it impossible to take time off sufficient for a surgery in October. I am stuck delaying getting a job to have surgery (which I can’t afford) or trying to “move on” from my body problems long enough to earn the money and be able to take the time off, which is basically saying that having a fucked-up vagina never mattered in the first place.
- I am fucked. Goodbye, I’m just done with all this shit.
- Serbia seemed like a nice place. I was only there for 30hrs or I’d have loved to explore it more.
As many of you know, I suffered considerable complications from my gender reassignment surgery in 20http://hannahsimpson.x10.bz4, and a 20http://hannahsimpson.x10.bz5 revision made things worse. Over the last year and a half, I have been working with the transgender “care” team at Mt. Sinai Hospital in New York City. I say “care” very loosely. This team includes a primary care practitioner, a urologist who is learning to perform gender reassignment, and a gynecologist who has many trans (FTM and MTF) patients. None of them wanted to touch me.
They had put me in touch with a specialist surgeon from Belgrade, who during his last visit to the US, had come up with a plan with them to do as much as he was able to with respect to the visual and sensation aspects of the damage I have suffered. He was not able to address all of my concerns, but was the best hope I had, considering all the doctors I have spoken to in doing more than my diligence in getting additional opinions.
A few months ago, I was told this surgeon would be teaching again in New York City, likely in August, and that that was my target date for my third surgery. The third week in August, to be specific. This would likely be treated “as a primary surgery,” in that I would need to do a full bowel prep, and spend two nights on bedrest in the hospital, among other things. I put effort toward making sure I had my family and support network in place, as well as getting mentally prepared for this newest stage in my journey.
A little over a week ago, I got word from the urologist that I would not be having surgery the third week in August. I was told that they “might” be able to help me in the future. It was unclear at this point whether I was still receiving medical care, or favors, from this doctor. It was heartbreaking.
I happened to be already in Europe, specifically London and the Netherlands at the time, on other business and visiting family. I asked the New York urologist if there had been any consideration to me having had the surgery in Belgrade, where the surgeon is based. There had not been. I asked if they would contact the surgeon on my behalf to start discussing that option, and I was instead referred “to visit his website” and contact him myself.
I did, and he wanted to examine me again to come up with a surgical plan. I thought he already had one, but he wanted to examine me again to confirm it. Very well.
What followed were a few days of frantic back-and-forth emails with New York and Belgrade, beginning with an offer to be seen this past Monday at 2pm in Belgrade, as well as a confirmation that there was no way my New York doctors could promise this surgeon would have time to meet me in New York during his “busy schedule” even if it was just for a subsequent consultation and not a procedure. It was also not immediately clear if or when he would be back in the US again. I was in London, but felt largely numb to my otherwise thrilling surroundings.
I made the decision that the only way I could move this process along for me to actually get my surgery scheduled was to see this Doctor at his own office in Belgrade. While getting there was a relatively simple 2hr flight from Amsterdam and cab ride, it cost me over $800 to book round-trip on short notice, as well as change my return ticket to make my travel as easy as possible. I do not have $800, just credit cards. Throwing money at a problem doesn’t exactly make it go away.
The surgeon was mostly cordial and happy to see me. He genuinely wants to help, and made that clear. He did say some bone-headed things like, “It looks better after the second surgery,” except for the fact I lost my clitoris, which since he can’t exactly fix doesn’t register as a big deal. Typical man.
He wanted to make the consultation free for me, and was not charging me. I mentioned I had spent over €700 to even be sitting there on his stirrups. He said, “That’s not my problem.” Yes, it’s mine.
I am not http://hannahsimpson.x10.bz00% satisfied with what he can offer, but I am not finding any better options, so there is pressure to move forward so I can have a chance at a normal sexual life, and thus a normal life. Every day I am living right now is a challenge, because my genitals legitimately scare me and it is a continuous trauma whenever I look in a mirror, use a bathroom, or even contemplate being intimate. I’d haven’t been able to masterbate at all, there is nothing to stimulate given the nerve damage. I am going nuts.
I asked him when we can move forward. He said August was impossible because I’d have to be off hormones for three weeks for him to operate on me. Wait a second! Nobody in New York told me that, and it was barely three weeks before my surgery when I was told it was not even happening. Clearly there had been ZERO coordination between this team in New York and the surgeon they wanted me to work with. Considering it took them from November until February to tell me an MRI they first put me through was useless and needed to be repeated, I should not have been surprised.
August is out of the question, and September the surgeon is on his vacation with his family. There was no way I could get a surprise surgical appointment while I was still in Europe. I would have to come back to Belgrade at some point in the future. The surgeon said, “Oh, there are direct flights, it’s only €500.” He also wants to make the surgery as affordable as possible, which would be around €3000, the lowest fee he can do. I am not sure if that includes hospital, anesthesia, etc… and it certainly doesn’t cover my airfare, a companion, or two weeks in a hotel plus other expenses I’d incur.
As I’d be going abroad, there is no guarantee I could successfully petition my NY State-based Medicaid to cover it, even if under the circumstances it is not like I have any domestic options. Tried that. Failed. It’d be up to this same team of doctors to make that petition, but I am hesitant to put them in charge of any other aspect of my care moving forward.
Now is the part that is really stressing me out:
October is the soonest possible target for surgery.
My entire life is has been on hold because it is really hard to just think about having a normal job or career, let alone want to be alive, when my body looks as fucked up as it does in this area after two botched surgeries. It has left me too depressed, and quite frankly, for many months, unstable, to either restart Medical School as I had once hoped, or to find other avenues to move on. I have been lucky to have had the emotional and financial support of my parents to get through the worst of it, or I would no longer be alive by now. Sadly, their resources are not infinite either, nor is it fair to impose that on them.
I had a vision of my future that involved being off my feet for most of August and starting to look more seriously for jobs in the fall, perhaps something seasonal to get my started again. I have had two job interviews in the last week which I am tremendously excited about. Both are jobs related to politics and government. One lasts through early November, if offered to me, and would involve working 7 days a week. The other might begin in October or November and continue indefinitely. Both are huge opportunities?
So what the fuck do I do?
Turn down huge life opportunities to keep myself free for a surgery I desperately need, but can’t even afford? Or do I take the job, and just try to suck up the fact I am still scared of even waking up in the morning so that I can earn more money and not even have the time to take off to get this surgery?
My primary care person in New York emailed me and said, “We can discuss Belgrade when you get back.” How fucking ignorant is she? I booked my return ticket based on having surgery a week later. If I hadn’t pressed the issue, nothing would have happened at all.
These doctors could have been exploring options for me being operated on in Belgrade all along, especially if they were only half-heartedly at best exploring the options for this surgeon to work on me in New York when he visited. This could have been a contingency all along, and even if all I needed was a consult again, I could have booked these tickets weeks early and spent $200 instead of $800 to get from Amsterdam to Belgrade and back.
This entire process has been endlessly complicated, frustrated, embarrassing, expensive, and stressful. I am getting zero help, I feel like I am the only person advocating for myself, and despite screaming as loudly as I can I am continuously denied the after-care I need from this surgery. It would be enough if it went badly, it is too much to bear that nobody seems to give a shit.
I left my appointment with the doctor in tears, and walked into town to a $http://hannahsimpson.x10.bz3/night hostel in Belgrade. I visited a lovely Byzantine church and ate a grilled dinner in the touristy, cobblestoned Bohemian quarter. The next day I took an English-language walking tour, wrote some postcards, bought stamps, and took a bus back to the airport. That was my day in Belgrade.
Time, money, dignity, sanity, spirit, and vaginal sensation. I am left depleted.