Thursday, November 10, 2016

3 Weeks Until Surgery - The Feels

I will be having RFF Phalloplasty surgery with Dr. Crane in Austin, TX in exactly 3 weeks from today and there are three main things on my mind: Complications,  WTF - Can't people just do their jobs?, and Joy. I'm not even gonna go into the election.

Complications
I've been actively involved in a few private/closed Facebook groups for the past few months and it's given me a lot of exposure to the variety of experiences that trans guys have when seeking and having a phalloplasty. It has been mind-blowing, affirming, and deeply grounding. Complications seem to be a very common occurrence. Now, I don't just mean the usual strictures and fistulas (seems that fistulas, especially those that close up on their own, are the most common), but I've also observed guys who have gotten varying degrees of necrosis of their penis, some with urinary tract infections, MRSA, hematomas, and so on. It is likely that I will experience one or more of these things, especially since my previous surgery increases my rates of strictures and fistulas. And, in case you're thinking that you'll find the surgeon who this never happens to, don't hold your breathe. There isn't one surgeon, team, or location where a trans guys hasn't ended up with some type of complication. Yes, some are more practiced surgeons and some techniques reduce some risks, but nothing is 100%.

Acknowledging that I will likely not have a smooth-sailing recovery has grounded me, and I feel more centered living with realistic expectations. I enjoyed my time in the land of "nothing bad will happen to me" for a while, but getting real is preparing me to accept what comes next and to know that there are always solutions or alternatives to undesirable outcomes.

I'm scared that I may not be able to "survive" devastating complications, but a therapist told me once that no one has ever died from disappointment. I will get through this and I am so grateful for all of the guys participating in these online networks of care, resources, and support. THANK YOU!

WTF - Can't people just do their jobs?
I don't know what to say. I've spent the last 5 months corresponding (via email or phone) with administrative staff in various offices anywhere from 2-8 times/week. Here's a taste of my frustration.

During my consult in July, Dr. Crane told me that I would hear from a scheduler in 2-3 weeks with my surgery date. On week 3, I called the office to be told that it usually takes 6-8 weeks to schedule a surgery. I thanked them for this information and told them that they should probably let Crane know this since he was setting unrealistic expectations with his patients (not a good practice). 4 weeks later I called to check in about the surgery date, to request a letter of medical necessity for hair removal, and to confirm that their website information for doctors letters was accurate. I left a voicemail and never received a response. Two weeks later (8 weeks since my consult), I called again and was told "We're still working on it" and that I would receive a letter of medical necessity that day. I received that letter via email two weeks later. I commenced calling twice a week for the next 5 weeks to confirm a surgery date, which I eventually got 13 WEEKS after my consult and after more than a dozen phone calls!!!

I have now exchanged over 26 emails over a 6-week period with the insurance coordinator and the process of having my insurance authorized, counted as in-network, and treated as a single-case agreement has still not been finalized. In other words, I'm scheduled to have surgery in 3 weeks and it's still not 100% clear that my insurance is paying for this. If this falls through and I'm considered out-of-network I'll be expected to pay up front for surgery. Not going to happen. I have exchanged 9 emails and 3 phone calls requesting my pre-op surgery packet, which I've been informed I will get tomorrow.

I have also exchanged 14 emails and 3 phone calls over a 6-week period with the law office that is doing the paperwork for my Last Will and Testament and Durable Medical Power of Attorney, which I need in two weeks before I get on the road to drive to Texas. These are boilerplate documents. I probably could have found one online, drafted it, and spent less time doing so than writing the paralegal emails asking for when this will be finished.

This is all to say: WHAT THE FUCK - CAN'T PEOPLE JUST DO THEIR JOBS?! Evidently, the answer is no. My advice - be the squeakiest wheel you can be. No one else is out there advocating for you and your healthcare and that is a goddamn shame.

Joy
I keep finding myself fantasizing about my future penis - what it'll feel like in my pants, in the water when I'm swimming, when I roll over onto my stomach in my sleep. I wonder. And, I smile a LOT. I'm going to have a penis. A penis. Mine. Soon. !!!

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