Well, another milestone. Today makes 6 weeks since I had RFF with Dr Curtis Crane in San Francisco, CA. Things are coming along well. I did make a brief post when I had noticed that my small urine leak which was coming from my scrotum, closed up. Since my last big post at 4 weeks, the biggest changes have been that my scrotum stopped leaking (both urine and other fluids that were draining), and my SP (supra pubic) cather was removed. Those two things were HUGE for me. Honestly, since the time I started plugging my SP (at 13 days post-op) and was able to ditch the catheter bag, having a SP catheter got A LOT easier. It wasn’t a big deal – it wasn’t exactly ideal either, but it was manageable. It was mostly just annoying, and thankfully not painful. But still I did have a constant worry of something accidentally getting snagged on my tubing (even though it was under my clothes), or accidentally tugging on it with my hand when I would reach into my underwear to adjust my guy (that WAS painful). There was also general tenderness around the opening where the tube entered the body and the need to clean the opening a couple times per day so the scab didn’t take over. So while it wasn’t a huge deal to have the SP, and I mostly tried not to think about it, it was an utter relief to have it removed.
I felt human again afterward. From the time you arrive at the hospital the morning of your surgery and get that first medical device hookup up to you (usually an IV) you’re connected to a ridiculous amount of stuff – both devices and bandages, for many weeks. So as you shed them, one-by-one it’s like coming to life again. It seriously felt like being reborn, especially with the introduction of your radically altered anatomy!
Everything felt new and fresh and I was soooo grateful for the freedom and mobility that has come with each new step towards full health. haha. It’s like that scene in Forest Gump when the bullies were chasing him down the dirt road and Jenny yells: “Run, Forest, RUN!!” And as he does he starts to bust out of the leg braces that he’s been wearing forever to help straighten his back. Annnd, life is just never quite the same again.
FOREARM: My arm is doing well, and looking super healthy:
At this point the graft is 99% healed and has been for a while. I’m well past any fears with it “not taking” which can be worries early on with patches looking odd and all sorts of colors going on.
There are too teeny tiny scabs still present, both existing along incision lines. One where the two grafts are sewn together:
And the other along the edge of one of the incisions that meets the “bridge”. If I am too rough with massaging it with lotion they will open a bit and bleed the slightest bit. You might not even be able to see them in the photos because they are so tiny…
I continue to have some mild to moderate swelling in my hand. The amount of swelling really fluctuates depending on how much I’m using my hand and what I’m doing with it. The more physically demanding, the more edema.
Funnily enough these two hand pictures were taken just moments from one another. Just an example of how deceiving photos can be. You don’t really see how swollen my hand is without the comparison to my non-donor hand, and the different angle helps too:
I also continue to have some moderate swelling along the tattoo/incision line towards my elbow. But otherwise, the “leash” incision line has flattened out really well. Initially there were some weird puckers going on and they’ve completely smoothed out without a whole ton of effort on my part, just minor occasional massage.
Finger strength is pretty good. It was measured at my OT appointment 1 week ago (3/10/16) and it’s almost 2/3 of my non-donor arm. I think my grip strength with my left hand was 70lbs and my right was 45lbs. So still strong, but indeed has a long way to go. Wrist flexion continues to be my biggest noticeable issue/hinderance with my donor arm. I’m hoping in another 6 weeks that I’ll have about 80% (or more) of my range of motion back. I’m currently going to OT 2x per week. I planned my surgery to happen at the beginning of the year so that once I hit my max out-of-pocket the rest of my care for the year would be free. So my OT appointments are totally free now. No co-pay and no co-insurance. I think I have 35 visits per year, so I’m utilizing all the “free” care that I can get. I could certainly rehab my arm myself, but since I have the time and the free care, there’s no reason not to take advantage of it, it’s part of why I planned things the way I did… I’m using Eucerin on my forearm 1 or 2 times a day (I applied it more frequently initially). I have my silicone sheet that I just got recently –> Cica Care Silicone Sheet and I’m planning on wearing that for at least 6+ hours at a time to really help continue to flatten the scars out and blend them in with the surrounding tissue. This silicone sheet is VERY comfortable!
There is also a much cheaper option of a silicone sleeve that you can find on Amazon for a fraction of the price. It was recommended by Olga, one of the hand therapists at CPMC and she said has been used by a lot of guys. Depending on your graft size, you might even be able to cut it in half and get TWO sleeves out of it. You can find it here –> Silipos Gel Tubing. I was also given a cheap compression “sleeve” at OT (the one that’s cut off a long wheel and then they cut a hole for your thumb):
It’s ok. I’ve worn it a couple times. It’s long enough that it covers the area I’m experiencing edema along my tattoo at the beginning of the “leash” incision point. They do wear out after a week or so of use and you eventually need to replace it. The other issue is that it doesn’t provide full compression coverage in my hand where the majority of my edema is. So I’m overall not into it, since it doesn’t address my main need from a compression garment at this time.
My hand therapist also fitted me with a relatively cheap compression glove at my OT appointment and charged me $12 for it. You can buy them here. –> Isotoner Glove. I ended up being an extra small. You might want to just have your hand therapist measure you for one so you don’t order the wrong size. It seems as though I’m a medium in most other gauntlets that I had been looking at online, so I was surprised when I was an extra small for this one.
Today she started me using thera-putty and charged me $7 for one container of the orange strength.
FYI, you can buy a set of 4 containers/”strengths” on Amazon for $9 with free shipping –> Therapy Putty. I’ve always been given putty for free at every other OT location, so I was surprised they charged me for the putty and the glove. I have even been given a silicone sheet for free which are much more pricey than putty and an isotoner glove.
I’ve been given lots of hand exercises to do, with and without putty. I’ll include photos of the exercise sheets. From my first appointment at 10 days post-op, till present:
THIGH: My thigh continues to itch like CRAZY! I’m often tapping or slapping at it though my sweatpants to make it stop… it doesn’t. So lotioning is really the only thing that helps. I’m applying lotion and massaging it probably 5-8 times per day. The lotion feels good but the massage really helps to stop the itching for longer than just a quick “rub & run” application (*wink). When I’m massaging it I can really see how the tissue is healing. I’m better able to see which areas are going to fade sooner than others and the general look of the scar is less severe after spending just 3 or 4 minutes doing this. I’m still experiencing drastic changes in the scar color depending on what I’m doing and what my body temperature is. If I’m colder or well vascularized it’s still turning a dark purple color:
If I sit down and rub my thigh for a minute it turns this pink color again and the purple fades away. This is just my personal experience with new scars – it will eventually stop.
PHALLUS/PEEING: Man, I feel like I am like an 8 year old boy. I am sooooooo grateful to have a penis and be able to pee from it. That function alone has totally transformed how I feel IN and ABOUT my body. When I stand in front of the mirror and look at my shape I am still just utterly amazed. Standing sideways looking at my profile and seeing my penis jutting down and slightly out is just so amazing. Even the color changes when I stand up – it flushes and turns a shade of pink, especially in the glans!!! I wasn’t expecting that and I view it as a total bonus for the time being, even though I’m planning on having veins tattooed and adding a more natural or flushed genital skin tone at some point. I honestly still can’t believe it, there are so many feelings I am still processing about all of this – mostly gratitude and joy. At times it’s just so overwhelming and I can’t fathom the reality that I am finally a man with a penis that I can relate to, and that I feel whole. I feel more whole than I ever dreamed was possible with this process. I’m not sure if this statement will convey what I mean for it to, and I hope that it doesn’t come across as offensive, because I certainly don’t mean it to. But I don’t feel like I have a phalloplasty – I just have a penis. And I’d imagine that’s probably a really common experience among the men that have this surgery. From the moment I woke up from surgery, I immediately felt it was mine, but when I had my glans done 15 days later, I deeply related to my phallus as the intrinsic piece of my body that I had been mourning for 31 years. The flesh, the warmth, the hang, the jiggle, the sensation of it in my hand as it fills up like a hose and thickens when I pee, and having something to shake off after I’m done. I’m sure these things sound ridiculous and silly to to people that haven’t lived with a missing body part that’s integral to so many different daily bodily functions, as well as being so intimately woven into their gender identity. But these seemingly “small” things have radically transformed my life in ways I don’t know that I’ll ever “get used to” or have the capacity to take for granted. When you’re life’s biggest need and deepest wish convene and MANIFEST, new ground is broken and what lies beyond is completely unknown territory. I feel like a massive mental landscape has been swept clear for me to focus on other crucial areas of development, growth, and pursuits that I was incapable of fully accessing till now. I still have lots of healing and stage 2 (erectile and testicular implants) to take care of, but the majority of the emotional shift for me with this surgery has already occurred and truly exceeded my expectations.
GLANSPLASTY: I am now 4 weeks out from this procedure and my glans is healing SUPERBLY! I haven’t had any issues with it since the bleeding drama I had while in SF. Once that was stopped using a 10 min pressure hold by Chen at CPMC, there have been zero issues. I was applying a layer of bacitracin to it 2-3 times per day for like 2+ weeks and then stopped about 10 days ago. There are still visible sutures present at the glans. I don’t pick at or try to remove them. I just let them do their thing. If they clearly appear to be unattached and dangling, then I will give a gentle tug or trim it. But only if it’s long or likely to snag on something.
GLANSPLASTY INCISION: This incision is of course also 4 weeks old, as it was the location where the graft was harvested to use on my phallus for the glansplasty procedure. The incision line looks beautiful. It’s thin, and very flat. I can still feel a few sutures present. Again, not messing with them. I’m happy to let them hang out till they’re ready to let go.
You can also sort of see the SP scar hidden in a nest of pubic hair. The scar has an interesting shape to it. It’s fully closed, and has been since within 24-hours of the catheter being removed (10 days ago). However, I feel like the pubic skin while I had the catheter, was being pulled down by the weight of my phallus more so than it was when they initially placed the catheter. At the time of placement, my phallus hadn’t yet been created and so I don’t think there was any tug happening to pull the skin down, I was also in a supine position. But after 4.5 weeks of having it in and the skin being pulled down a bit by the weight of my penis while I sit or walk, I think it contributed to a bit of a dimple. Here’s a closer look at it:
When you have an SP in the body starts to create a tunnel of skin that heals around the tubing. Once the tube is removed and the hole closes up, but the outer tunnel/scar tissue still remain. So when I press/rub on the scar I can feel where the tunnel used to be. I haven’t done any massaging of this scar yet, but I think with a little regular effort working at the adhesion, I can likely resolve the minor dimple.
NERVE HOOKUP INCISION: I’m fairly confident that all the sutures have finally dissolved/fallen out along this incision. I have done ZERO massage or moisturizing of this area – I probably should as it would likely help to lighten the scar. The nice thing about it though is that it largely blends in with my natural hip/groin crease.
SENSATION: I still only have partial sensation in my scrotum. The far right side (opposite of the nerve hook up) is highly sensate (both tactile and erotic) but the rest is still numb. From what I understand this is not unusual and sensation could take many weeks or months to return. In terms of the phallus, I have both tactile and erotic sensation in some spots on my mons pubis around the connection point of the phallus. I was not expecting this, this is new. It’s a radiating sensation that feels like it’s coming from my pre-surgery penis – it’s interesting. Also, when I tug on my phallus or when I walk around with no underwear on, press my hips up against a counter that I’m leaning against, or grind into my bed while I’m laying on my stomach, I feel erotic sensations coming from the base where the little guy is buried. I started having orgams at day 34, just shy of 5 weeks. Having the ability to both pee from my penis, and orgasm is a total relief. Knowing that I can already orgasm while having zero sensation in my shaft, and that things are only going to get exponentially BETTER… well, it’s a beautiful life. I’m really looking forward to the nerve hookup growing in, but I am surprisingly not desperate for it. It just feels like an exciting bonus that I’m going to slowly start to experience – an unfolding of sorts. The painfully long wait just for my penis to be here and to gain the ability to stand to pee made me all the more grateful for it. I anticipate a similar experience in that over the next 2.5 years while full sensation grows in, in equal parts will grow my gratitude for that gift of that sensation, having had to wait for it as well.
VAGINECTOMY: I am continuing to deal with a pretty minor hole that opened up along my vaginectomy incision line. This experience is all too common and usually rectifies itself – so I’m not too worried. In the meantime it’s mildly annoying because it is leaking a very tiny amount of fluid (far less than it was initially) but it’s also tender and sore if I sit completely upright and put pressure on it. I keep it clean and dry and do a visual check of it almost everyday with a mirror. There looks to be no sign of infection, no puss, no red irritated skin around the small opening. However, to be on the safe side I did reach out to my local provider who performed my hysto exactly 4 years ago. She doesn’t personally do vaginectomies so she referred me to a provider that does. So I’m going to call on Monday and see if I can get in to have him take a peek at the wound and possibly swab it just to make doubly sure that there is no infection going on. It’s always good to play it safe. While I do feel somewhat self conscious of that area seeing as there is currently a form of small hole going on, I feel safe knowing that the provider who did my hysto and performs them on tons of transmen, gave me the referral. I also received a call from Crane’s office today and one of the nurses was checking in on me. I updated her about this issue and she reassured me that this is super common and eventually it WILL close up, but that it wouldn’t hurt to get it looked at by a professional. Hopefully by the next time I make another update it will have closed up/filled in. But I know it’s not uncommon for it to take many months at times. I can’t complain, this is a very minor thing and everything else has gone so well.
STAGE TWO (IMPLANTS): I’m currently aiming for stage 2 with Chen in San Francisco. Crane said I could have that done as early as October, which is when I’m hoping to be scheduled. I’m waiting on a call back from their scheduler to set an exact date. The plan right now is to get the inflatable, and one testicular implant, since the implant will utilize one nut for the placement of the bulb to pump up the inflatable. I hope eventually they design the bulb on the pump to emulate the size and shape of the testicular implants that are available. It’d be really nice to have two testicular implants that are more closely symmetrical. I don’t think visually it will really be noticeable, but it would be nice to feel the symmetry as well. Until just recently with the “Zephyr Implant Line” up and coming there were no erectile prosthetic implants that had been designed specifically for the neo phallus, and the FTM one at that! The current pumps with their odd shaped bulb is designed to be implanted in the cis male scrotum, and the patient retains both of their testes (assuming they have two). So it was never meant to replace a missing one, as it should in our case… I’d be tempted to ask for two testicular implants as well as the pump and just have the bulb be a third entity, as it is in natal males that have an IPP (intrapenile prosthesis) or ED (erectile device). However, it’s my understanding that the European teams site that the most common reason for failure of the pump is typically related to tightness and lack of space in the scrotum. For that reason alone it wouldn’t be worth it to me to risk it. I think I will be getting the Coloplast inflatable and either a medium or large testicular implant (whichever fits).
Alright. That’s all I got for now. I’ll catch ya again probably around 8 weeks if I feel like there have been some changes that seem worthy of posting about in the next couple of weeks. Take care guys. Thanks for reading and of course, feel free to ask any questions or make requests.