An MTX journey

[androgyny2018]

Post-revision and post-FFS

So my revision with Dr Shubham Gupta was about 2 months ago, and everything went well! I had about 15cm of depth after the revision and it's been holding steady at 12cm for the last 6 weeks or so. At first I was dilating twice a day, but I had to stop for 3 days while in the hospital for my FFS. I didn't have any loss of depth at that time, so I've gone down to dilating every other day, and it's still holding steady. I'm very happy with the results, though I hope I can get some more width through dilation to accommodate my partner for vaginal sex. I may also seek out a vulvoplasty next year or so for a more natural look; we'll see. The one thing I'm not happy about regarding the experience was paying the bill. The cost was about $120k, of which I've paid half and half is due in a few months. My insurer decided about 10 days before surgery that it wasn't medically necessary, and that they weren't going to reevaluate until after the surgery date, or else I'd have paid I think 20% of that amount -- less, probably, due to out-of-pocket maximums on my plan. I'm still talking with my lawyer and Dr Gupta's office about getting the appeal together so I can be reimbursed.

I also had the rest of my FFS about 2 weeks ago. Procedures included rhinoplasty, removing the Adam's apple, narrowing the chin/jaw, removing some fat from the chin/neck, and adding a small amount of fat to my cheeks. This was mostly covered by insurance but I did have to pay for some procedures that weren't considered medical necessary by my insurer. This was okay, because the amount came up to about 5-6% of what the vaginoplasty cost (sub-$10k). I'm pretty happy with the results, though they won't have their full effect for a few months when the swelling finally goes down. I did have to go on a liquid diet for 2 weeks due to swelling in my mouth and throat, but that's done with now.

Overall, I'm very relieved to have the surgeries over with. The only pressures left are getting a successful appeal through to my insurer, keeping up with dilation, and waiting for the swelling to go down on my face. I think these are all manageable, though.

I don't know what's next for my transition (and this blog) besides staying on HRT and the possible future vulvoplasty I mentioned. I might do voice training or vocal surgery. I still need to get my updated passport with an X marker (been delayed since I need new documentation with my new name and I live out of state from my birth location). My current state doesn't allow X markers on driver's licenses, and my birth state doesn't allow changing the marker on birth certificates, or else I'd do those too. I do plan on moving to a more progressive state within a year or so though, so I should at least be able to correct my new driver's license when I get there. That's all I can think of. The hard/expensive stuff is mostly done now, and that's a big relief.

[androgyny2018]

Another late update.

Partial FFS went well, though the changes are subtle so far. Not unhappy, but wish it could have been all been done at once.

Just got off the phone with my vaginoplasty revision surgeon. Date got moved to the second week of April (~1.5 weeks later) but he gave good reason for it. For safety reasons he wants to include a laparoscopic part of the procedure, so it needed to be rescheduled to fit the availability of the robot.

It looks like Kerecis is going to be the technique used, possibly augmented with some more peritoneum, depending what's available down there. Starting to feel a little more optimistic about the potential outcome of the revision.

Rest of FFS is scheduled for the 4th week of May, just long enough after my revision for the surgeon to allow it. This way my FMLA time will overlap and not get all used up.

Might know more about the revision in a week or two.

Feeling good that everything is lining up.

[androgyny2018]

So my insurer has pulled a new stunt. Since FFS consists of multiple procedures, they want each procedure done in a separate surgery. I was going to go ahead and do it all at once and sort it out afterwards, but the surgeon's office couldn't schedule a long enough block for "cosmetic" surgery with any nearby hospitals.

So I'm having partial FFS (covered by insurance) in about 2 weeks. My bottom surgery revision is already scheduled 3 months after that and that surgeon requires 3 months between any previous surgery and the revision. The FFS surgeon requires only 6 weeks between procedures, so it's likely that I'll schedule something 6ish weeks after my revision to do the rest of the FFS. Hopefully my insurer will have realized by then that doing all the remaining procedures at once saves money, stress on my body, and most especially healing time.

Also, while my lawyer was helping with the appeal for the revision, they asked me to resubmit the referral to my insurer. Upon receiving their response, my insurer gave preauthorization. Go figure. I can only assume that my having pulled out a lawyer in the past has influenced their revised decision.

That's all for now. Updates maybe in 2-3 weeks (cause I'm clearly so good at doing things when I say I will).

[androgyny2018]

More denials

Scheduling for FFS is set for December, vaginoplasty revision in March.

My health insurer has denied my referral to Dr Gupta. I'm working with a lawyer and we've caught a technical snag because the referral/denial were mistakenly for office visits, not for surgery. My PCP, who made the initial referral, is on vacation, so I met with a primary care doctor with my insurance who was surprisingly accepting and professional about my nonbinary goals, not something I have come to expect from most doctors.

So the proper referral should be in place and when it gets expectedly denied, lawyer stuff can proceed.

Meanwhile FFS is mostly covered (apparently some procedures to relieve my dysphoria are considered "beautification" rather than "facial feminization") and everything is in place for that. I plan to make a claim for the uncovered parts after surgery.

Whatever happens though, I will be proceeding with both surgeries, even if I have to self-pay part or all of it. My insurer has held me back for the last 6.5 years and I'm very done with it.

[androgyny2018]

Met with Dr Gupta in Cleveland; he was very respectful and explained things well.

My understanding now is:

* It's not really possible to revise a PPT vaginoplasty with more peritoneum.

* There is a chance that some part of the canal is still present even after stenosis. Exploratory surgery is needed to find out, as it doesn't show well on scans (MRI, etc).

* If there is some remnant of a canal, it may be possible to use NTFS or Kerecis or other techniques to extend the canal. This could be done in the same session as the exploratory surgery if something is found.

* Due to my upcoming FFS (still not scheduled; I've asked for an update), I will have to wait 3 months before another major surgery (such as this revision) so that my jaw can heal enough to have a tube put in my throat during surgery.

* I don't have an estimate for when Dr Gupta might be able to perform the surgery; I will get this once I have a date for FFS.

* I don't have a cost estimate from Dr Gupta yet. It depends on whether my insurer is stubborn again or not. If they are, I may have to self pay and submit a claim afterwards, but I am prepared to do so assuming the costs are reasonable.

* If the revision fails or there is no canal left to augment, Dr Gupta spoke as if colonic transposition was the only option left for me, which I do not think I want -- that will be a last resort. In this case, I will likely consult with Dr Ley in San Francisco, who I know has done at least one PPT PPV revision using a skin graft.

Plan of action:

1) Seek approval from insurer for revision.

2) Check with FFS surgeon until they give me a date. If it is some ways in the future (I don't think this will happen), ask if there is any problem doing the revision first.

3) Check with Dr Gupta's office to schedule a surgery date 3 months after FFS, or an appropriate amount of time before FFS. Get a quote for insurance and self-pay separately.

4) Hurry up and wait for surgery time.

[androgyny2018]

No movement on the FFS front yet. I've asked for an update, but not gotten one yet.

Meanwhile after wallowing in depression for over 2 months, I've finally made an appointment with a surgeon who might be able to do a revision for a PPT vaginoplasty. That's a couple months out, so more waiting there, too. This particular surgeon uses a technique called Kerecis which utilizes fish skin in constructing the canal (not sure if this is the same thing as NTFS). Over time, the scaffolding provided by the fish skin is grown over with human tissue. Apparently the results are pretty good, if anecdotes from other patients are valid.

So yet another pause on the road to get answers.

[androgyny2018]

My dispute with my insurer has been resolved and that's all I'm allowed to say about it.

On to next steps, which are tracheal shave, FFS, and revision for my PPV. I've already consulted about all three.

Tracheal shave is already covered by insurance. FFS should be covered by my insurer by this summer hopefully. I will have both surgeries at the same time when everything is in place to do so.

PPV revision has been harder to tackle. Dr Wittenberg only wanted to refer me to a colon surgeon for sigmoid graft, but that doesn't mesh well with my goals. Instead, I met again with Dr Satterwhite and got a proper explanation of why revising a PPT surgery is so hard. Apparently, it's not just an issue with there being less tissue to work with, but also there is a risk that any surgery in the area could break into the peritoneal cavity, which is not good. So, my plans for a skin graft may be falling through, which was hard to hear. I got a list of doctors from Satterwhite who do perform PPT revisions though, and I plan to follow up on those leads.

[androgyny2018]

Redacted

Due to the terms of the upcoming resolution of my dispute with my insurer over coverage, I've had to go back and delete a few things about the process.

[androgyny2018]

12 month update

Wish I had better news.

I had to stop seeing my physical therapist because I was getting some slight bleeding during/after dilation and she wanted my gynecologist to check it out before we continued, so I didn't see my PT for around 2 months. And I wasn't as diligent as I should have been about dilating even when I was seeing her (or at any point part the first month post surgery, really). Contributing factors to that include depression, executive dysfunction, and scheduling. The depression in particular forms a negative feedback loop where the worse I feel, the less I dilate, then I feel bad about not dilating and about lost depth (in addition to all the other stuff depression does to me), then I'm less able to keep up with dilation, etc ad infinitum.

The result is that by the time I saw my gynecologist 4 weeks ago, I had lost nearly all of my depth. As a consequence, I will need a revision for depth. Dr Wittenberg and I talked over a few options, including colon graft, skin graft, and just *maybe* another peritoneal pull through (which I would be very happy about), but it's just not something I can mentally pursue at the moment. Similarly, I want a revision for the external appearance since it's lost most of its definition, but can't pursue it yet. I need to make sure I'm in a better headspace before I need to dilate again. That's a topic to take up with my therapist and psychiatrist though, not really in the scope this blog is meant for.

I had someone ask me today if I regretted the surgery, and I had to honestly answer that I don't. Having a vagina that's closed up sucks, but not having one at all really triggered my dysphoria in a way I don't really experience any more. Even if I knew this would be the result, I'd still have undergone the same surgery, and I am better off than I was pre-surgery.

I'll still keep updating this blog every now and then, and try to answer questions if there are any, but there won't be much vagina content for a while.

[androgyny2018]

9 month update

I've seen a gynecologist, who prescribed a steroid cream for the areas that still need healing or are irritated. She also referred me to a physical therapist who has experience with trans patients. My PT has been working with me to help me get back on track dilating and loosen the tension on my pelvic floor. I'm regaining lost width from when I slowed down on dilating. Depth is still the same at 6-7cm (was 15 at date of surgery), and likely to stay that way.

I spoke to my surgeon yesterday about possible revisions, but she said that they don't do internal revisions for depth with the peritoneal pull-through that I got. They do do revisions for labiaplasty, though, and my labia have lost a lot of the definition they had after surgery so it's something I'll consider.

[androgyny2018]

Hi...I don't have a clear question right now, but I'm thinking about this for myself...how difficult has recovery been? I'm scared of not being to exercise for months and months...

Probably better answered through consultation with a surgeon, since I didn't ask about it. For me, recovery was a breeze, but I live a pretty sedentary life, so I wasn't longing for exercise. I actually lost weight anyway because I wasn't going out to eat anywhere due to both recovery and Covid, and ended up eating healthier stuff at home.

It was a bit rough the first week or so, where I still had the catheter and packing in and was fairly drugged up and needed someone helping me with basic tasks. I was able to take care of myself by the second week though. I had essentially no pain (except tenderness when dilating), but this is apparently not very common.

As far as taking it easy in the medium term following surgery, I just made sure to not lift anything except really light stuff (about 10 pounds or less). The no-lifting restriction wasn't mentioned at my 3-month check-up, so I personally took that to mean it didn't matter any more. I would definitely clarify that with the surgeon if I you plan on resuming any abdominal workout though. I don't feel qualified to guess at the risk of hernia or other injury.

[androgyny2018]

4 month update

Sure has been a while since I made an update here. I meant to make one every couple of weeks, but that didn't happen.

Still doing well, healing well. Haven't been dilating as much as I should, which has led to some lost depth (don't do this), but even that has stabilized. The only ongoing issue is I still bleed a little after dilation, which my surgeon says is likely due to granulation tissue. So I have an appointment with a gynecologist who works with trans patients to see what needs done about that.

Honestly there's not much that has changed since the last update.

[androgyny2018]

2 week update

Things are still going pretty well. Pain is down to a minimum, and I'm getting used to the new dilation routine. I have noticed what appears to be would separation on one side though. I was warned this happens around 60% of the time, so it's not much of a surprise, but it is a bit tender in that area. I'll talk with my surgeon's team tomorrow at my second postop appointment and see what needs to be done about it.

On the more emotional side of things, I'm still happy with it, but it also feels really weird sometimes, especially while dilating. Like, I have a new *body part*, and the nerves haven't remapped yet. That's not going to happen for some time yet, so it's going to continue to feel weird.

Other than that, maybe getting a bit of cabin fever from not really being able to go out and do things. Not that I was all that active before, but being in bed most of the day for weeks on end, I've more or less exhausted the activities I can do. Mostly I've been playing video games on my laptop and working my way through about a 2ft-high stack of books I never had time for before. And that's only 2 weeks into what is likely to be a total of 3 months off work.

That's all for now. Got an appointment tomorrow and one a week after and then I will at least be heading home instead of hanging out in a hotel. Hopefully all will continue to go well. :)

[androgyny2018]

Aftercare

Well, it's the day after my first postop appointment rather than the day of/after surgery, but here I am. Everything went well in surgery. As planned, I now have a penis and a (neo)vagina. I had to wear a catheter for a week, which wasn't fun, and my partner had to help or do nearly all tasks for me. There was also some padding and sutures that were in place, which were pretty restrictive, but those were removed along with the packing inside the vagina during the postop appointment. Things came out reasonably well, I think. I'll have some photos at some point.

Pain hasn't been too bad; kind of like a mild ache or rash as long as nothing's poking at the area. I've started dilating, which is a chore, but that was the deal. Sensation inside the vagina is limited, and insertion is slightly painful, which worries me a little. It's probably something that will lessen with time though.

It's been great for me emotionally. It's weird, but I feel "normal" now in a way I wasn't aware I felt abnormal, like something that was always missing was finally set right. I guess that's the emotional payoff for sticking to it long enough. It's been 4 years actively fighting for it, and probably another decade of dreaming of it.

It's at this point that I think I'd start soliciting questions, but I'm pretty sure no one's following me. I'll probably end up posting this blog around a few places to maybe change that.

[androgyny2018]

Travel

Currently in the air somewhere above Nevada. Our (partner and I) flight got bumped by almost 12 hours, so we spent the day in the airport. Worked out finally though, so it's okay; not going to make me miss anything.

Up this week is a preoperative appointment (tomorrow) and a Covid test (the next day). Surgery is in 6 days. It doesn't quite feel real yet, being this close. But, I'm as prepared as I can be and I know it's the right thing for me to do.

Next post will probably be the day after the surgery. See you then.

[androgyny2018]

Been a while (again). Haven't had much to announce.

Still on track for surgery in November (date changed to the 10th). Got flight and hotel reserved, got FMLA approval from work, finishing up electrolysis (they were closed for a long time due to the pandemic, but opened back up in time for me to get this done), got my letters renewed...

Only major thing left besides waiting is making sure the money (in my 401k) will be released to me to pay for surgery, but I don't think there will be a problem there. I need to do a little shopping for post-op essentials, too. That's about it, really.

[androgyny2018]

Changes

Well, a lot has happened in the past 3 weeks. I learned that the estimate given to me about the hospital fees was way off, bringing the total cost of the procedure down to about half, where it is just barely affordable if I take on some debt. So, I decided to go ahead with self-pay for the surgery.

Right now, I have a surgery date of November 16, but I'm trying to get it moved up to June or July. At this point it sends like it all depends how soon I can get the necessary electrolysis done.

So, things are looking up.