Preparing for stage-2 RFF Phalloplasty

Supplements / Diet

At the month-before-surgery mark, I cut out all alcohol and caffeine again. I also started to up my protein intake, and reduce the amount of rubbish that snuck its way back into my diet. I’m also having a glass of cranberry juice every day – anything to help avoid UTIs!

I started taking my multi-vitamins (but that’s really more of a backup than anything else; and this time around, I’ve started taking my silica tablets and something called Citruline prior to surgery too. The aim is to build up a base level prior to all the surgical bits and pieces happening. 

Citrulline basically works like Arginine, the main difference appears to be that you don’t need to increase the dosage to get the same benefits from it.

Physical

Now that I’m finally at a stage where I can actually work out, I’m smashing it wherever I can. The lack of exercise really put me behind weight-wise, and I’m trying to catch up where I can prior to surgery. 

In terms of what Hans has to work with – I don’t think I’m doing too badly. I just want to make sure everything is in the best condition it can be. 

Psychological

I’m more nervous about this surgery than the first stage. 

Stage 1 – while difficult mentally – is quite limited in its range of complications. You essentially end up with a pipe that goes nowhere, so as long as the graft takes – everything that goes wrong can easily be fixed. 

Stage 2 on the other hand, can have some MAJOR things go wrong with it. And because I’ve already had a small stricture at the base of my new urethra, I guess I’m worried I’ll develop another one …. and this time I won’t be able to pee and just ignore it (to a certain extent).

That being said! On the whole, I am not concerned about this surgery. Generally I heal quite well, and I don’t have the reservations about how long I’ll be bed-ridden – because I know it will only be for a few days, and I’ll still be more mobile than I was last time.

The idea of peeing standing up without the need for any aids is an exciting one, but I don’t think I’m quite ready to be fully excited by the prospect, until I know everything has gone well.

I guess we’ll see in just under a week!

Cystoscopy Day

I’d like to start by calling myself an idiot for saying I was going to have a Urethrascope today. While technically not incorrect, the procedure is actually called a Cystoscopy, and the camera they use is called a Urethrascope.

I didn’t know whether just to do a summary at the end of the day, or do a blow-by-blow account like I did for my surgery day. Ive decided I’m going to do the latter; basically because up until this point, I had no idea what was involved – and the aim is to help!

To get you up to speed, a few days ago I had a call from the hospital admissions team. I had done my pre-admission online, but there was a glitch somewhere and it hadn’t gone through. It’s the same deal as stage 1 – they go through and make sure your details are right, and then give you a run-through of what’s required of you on the day. 

Because there is no plan to use anaesthetic or sedation- I don’t have to fast. That being said, I can’t eat right now anyway because I’m quite nervous.

0600 – Dr Goossen’s receptionist told me to get to the hospital for 0700, but the admissions staff said 0630. The time differences do wonders for my nerves (not), so I ordered a cab to leave at 0600. My parents are about half an hour away from the hospital, so I’ll leave it up to traffic to decide what time I get there!

Dr Goossen doesn’t start until 8ish anyway – so I don’t want to be too early!

0618 – Apparently the traffic wanted me here really f***ing early.

0631 – You don’t need to see the staff at the front desk, you can go straight up to the day surgery area. The staff there were lovely, and very efficient. After “checking in” it’s just a case of waiting for the nursing staff to call you through.

0717 – The nurse just came and went through my paperwork again. Annoyingly it looks like the scales at home are out of whack… I have a bit more weight to lose before stage 2 than I’d originally thought. I hope it doesn’t affect the surgery date – because I know I can hit that target.

Apparently I’m second on the list, so they’ll come and get me sorted when the first person heads through. Hopefully I’m still not here for too long.

0745 – All gowned up. Apparently surgery starts at 0800 today and the first one is really quick. I’ve been given my stylish underwear and a bed to sit in until it’s time to go. 

0924 – I’m waiting for my cab home! So at about 0815 they took me through to theatre. I actually recognised a few of the staff from stage 1, and they remembered me 🙂

Firstly – operating rooms are bloody cold! I knew they were cool, but normally I’m heading off to sleep quite quickly lol. They shuffled me onto the bed and got all the equipment onto position.

Then Hans got the dye and he had a look for any narrowing; once that was done, he had a look with a camera. I have some scarring on the tip that made it difficult to get the camera through – so they had to use a metal dilator to manipulate the scar tissue enough to get the camera through. After that – all done! No anaesthetic at all… the worst was a slight pinching sensation, but it was more than bearable.

So! I do have some narrowing down near the bottom where the granulation is – about an inch or so. To be honest that doesn’t surprise me. As soon as I started having the slough issues I knew there would be something going on there.

The scarring at the tip may need revising, but Hans is going to take it as it comes and we’ll see what happens. The rest of the pipe is looking nice and open 🙂

No issues regarding stage 2 occurring, I have an appointment to see Hans a couple days before surgery to go through everything one last time, and I have some bloods to get done a week prior to the procedure! Exciting times!

5 Months Post Stage-1 RFF Phalloplasty

***Please be aware that I have placed some pictures of my arm in the arm section. If you’re a bit squeamish or don’t want to see them – just scroll past***

I know this update is late, and other than the whole Christmas-thing, I really don’t have an excuse, so let’s get into it!

I finally feel like I’m pretty much back to where I was pre-surgery both physically and mentally. It took much longer than I had anticipated, and it was very frustrating at times – but I feel like I’m there now. I have a couple things that will still take some time, but they’re just little fiddly things that are going to take time – so why worry?

Arm

I have healed! Not long after I saw Scott and Hans back in December, I cracked the s***s with the small wound I had on my arm and just put an op-site dressing on it, so it wouldn’t adhere to my compression garments. Two weeks later – fully healed. Lovely.

Range of movement is continuing to be fine, and last grip strength test had me at over 30kgs on both hands – which was awesome. I can’t remember the fatigue, but it’s going well.

Last week, my OT took a picture of my arm and we’re using it to determine how good the feeling is in different areas, and how it progresses (at the moment it’s pretty sporadic, with no pattern at all as to where it’s better or worse). It’ll be interesting to see how that goes, and we’re starting some desensitising stuff next week.

I was given the go-ahead from both Hans and Scott to start an upper-limb strengthening class when I saw them too, and I started that last Tuesday. Basically it’s a little circuit that you go around and do once a week. In this instance, there are five stations with two exercises at each. You do one exercise for a minute, then do the second exercise for a minute. You do that twice through, then move to the next station. I think we were meant to go through twice – but my arm was really red and tired after once through.

One thing the strengthening class did show me, was that I don’t appear to sweat through my arm like I do everywhere else. It does get clammy, and I can definitely feel that it should be sweating, but it doesn’t bead like sweat normally does.
Unfortunately, a result of this is that my arm gets REALLY hot when it’s used. For those who don’t know, sweat is the body’s way of cooling down; if my arm can’t sweat – it can’t cool down. I mentioned this to my OT, and she suggested a spray bottle of water when I’m working out – so I’ll give that a go next week.

I find that the harder I use my arm, the redder the scarring goes. I mowed and whipper-snipped (strimmed) the lawn the other day and the whole scar turned purple. The same happened after the strengthening class. It should go down as the scar matures – but I was a bit concerned the first time it happened. I’ll take a picture the next time it happens so you can see what I mean.
You’ll notice my scarring is a bit darker in this month’s pictures – it was a couple days after working out, so it was still a bit dark in places.

Pictures are below, and I’ve just got the last one from last month and this month (it’s pointless doing weekly ones now). As usual, they show the main wound area for comparison reasons. I also have a comparison on there between September (just post-infection) and now – you’ve been warned.

Month 4

Month 5

Sept-Now Comparison

Phallus

Hypergranulation is there still in the urethra. Unfortunately I can’t flush the phallus through fully with saline anymore. I’m still doing it in the hope it’ll get rid of any rubbish that’s in there – but I’m pretty bummed that it’s closed up.

I mentioned in my last post that I’ve had some changes in sensation. So, as of today, I have some form of sensation on the whole of the right side (I can now feel it almost at the base of the phallus), and on the left side I have pinch sensation about 3/4 of the way up! Very excited. I also spoke to my OT about when I should be concerned about sensation stopping coming back, and she said that she wouldn’t be concerned until about the three-year mark. Nerves grow at a different rate for everyone.

Next week I go in for my Urethroscope, so it’ll be good to see what’s going on inside. I’m also going to start putting up a couple things I’m looking at selling (packers/hand exercisers and the like). If anyone is interested, let me know.

Doctor Review (December)

Hello!

Sorry for the delay in posting, it’s been crazy with Christmas and the holidays. This post relates to a review I had with Hans and Scott on 20 December. I’ll be posting my 5 month update over the next couple of days too – so watch out for that.

I saw Hans first. He had a quick look at everything, and we discussed feeing. At the time, I still only had feeling on the right side (more on that in my update!). He seemed slightly concerned until I told him my nerves seem to just be slow at coming back. A few years ago I almost took my finger off whilst cutting up sticks for my pet bird; the nerve was cleanly severed and still took a good three years to grow back fully.

We discussed the drainage issues I was having too. In the days leading up to my appointment, I found I couldn’t flush through the phallus at all. We both think it’s due to the hypergranulation tissue, but just to be sure (and to make sure there are no other issues hiding), I’m having a urethrascope on January 19th. Basically, Hans is going to take a camera and put it through the phallus to have a look and see what’s going on. From there, he can see exactly what he needs to do during stage 2, and can make informed decisions on any revisions he may need to make.

At this stage, the urethra feels fine, we just need to ensure there is no narrowing or blockages that have occurred. There’s a chance he’ll need to revise the tip slightly, as there is some scarring that could impede urine-flow; but if he doesn’t need to revise it then he won’t.

Hans was also really happy with how it arm has ended up healing. Now it’s just a case of scar-management, and even the scars as they are now won’t be that way for ever.

Once I was finished with Hans, I saw Scott at his offices. It was a quick visit in comparison to my usual visits which could be a couple hours long. At that stage, everything had healed except one minor wound that was slightly less than a 5c coin in size; and even that was only there because it kept getting caught on the tubi-grip I had on it.

I got the go-ahead for a strengthening program, and I just need to see Scott once more to make sure the wound heals (it has). He talked about possibly having to get something done to aid the healing – but I don’t think it’s necessary. 

I see Scott again sometime in February/March while I’m down for stage 2. Not because he had anything to do with it – just because it’s an airfare that doesn’t need to be bought! Hopefully that’ll be the last time I have to see him.