3 Weeks Post-Stage 1 RFF Phalloplasty

I feel like I say this every week – but I can’t believe I’m three weeks post-op! Crazy.

This has been a pretty exciting week. If you’ve read my earlier posts, you’ll know I got the go-ahead from Scott to go home next week. I’ll be seeing him before I go to discuss post-op care from a distance, and to make sure there are no issues with the cast.

I’m feeling pretty much back to normal now. The doctor has written me off for another couple of weeks, but I should be back at work after that – which I’m happy about. The time off has been nice, but it’ll be good to get back into a proper routine.

Movement

I’d say at this stage I’m about 90% back to my pre-op movement standard. I still have to make sure I move slowly when I crouch or kneel down, but other than that I’m there.

I go for a walk each day, and I’m increasing the length of time I’m out for. I walked to the shops and back the other day (about a 5km round trip), it went pretty well. I was able to keep a good pace up on the walk, and didn’t really tire out at all while I was there. I had no pain at all either – so all up, a good outing 🙂

Arm

My arm looks better and better each time I get the dressings checked. After I moved to my day cast/night splint setup, it took a couple days to get used to the change in hand position, but it’s feeling a whole lot better now. It was really uncomfortable and painful for the first day or so. I was really pleased to find my fingers have regained their range of movement really quickly, and I think the hand exercises have helped immensely.

The oozing has almost completely stopped, and even the part of the graft that was looking shady where the sling was sitting, is looking better.

I’m currently still sleeping with my arm fully upright in a sling at night, but that’ll probably change to being elevated on a pillow next week when I go home. It’s starting to become really irritating sleeping that way, so I’ll be pleased to have a change in sleeping position!

Phallus

The swelling has almost completely gone. I have an area on the tip of the phallus that is taking a while to heal due to scabbing – but that should be fine in due course.

I mentioned earlier in the week that there is an area on the other end of the new urethra that is looking white, and could potentially cause some extra work to be done in the second stage. I found that it was draining some fluid (not an issue depending on the type of fluid), however it wasn’t draining well – and was starting to smell as a result. Mum managed to get a hold of some stuff called AquaCell, which I’ve been applying nightly. Cut to five days later – it’s looking 100% better already. The stuff works by wicking away the excess moisture without drying the whole area out, and in this instance could be the difference between losing that part of the graft, and just losing the dead layer of skin.

That’s pretty much it for the phallus at this stage. I still have a heap of stitches that need, and I’m hoping they’ll be out soon. They’re starting to rub on other parts of my body, and it’s quite painful at times. I *may* have caused some slight bleeding yesterday when I trying to pull one of them out (I thought it was undone… It wasn’t)… Don’t. Do. That. In the end, I just spun it around a bit so it wasn’t rubbing.

Bum

Going pretty well overall. The swelling has gone down, and I’m just working on the scar management now. I took the tape off, and things simultaneously felt better and worse. On the plus side: I don’t feel like I’m stretching the skin all the time. On the downside: I keep forgetting that I have scar tissue there, and then moving too quickly.
That’s it for this week. I’m going to stop doing individual posts or appointments and roll them into my weekly updates. I find I’m losing my place and repeating myself. See you again when I’m home!!!

Post-op Appointment Scott/OT #2

I know I’m late with this one, I just needed a bit of time to gather my thoughts.

The appointment went really well. We only took off the secondary dressings and left the primary ones on (primary dressings are the ones that are touching the wound), everything is looking great. Even the area that looked a bit unhealthy because of the sling placement is looking better. There is still a bit of oozing, but that should stop in the next week or so.

I have moved up in the world from my full arm splint! I’ve now got a wrist cast that I wear during the day, I still wear the other one at night – but that’s all good. Nothing wrong with a bit of extra support at night! I got to choose the colour too; I went with yellow, the more obvious something is to people – the less likely they are to walk into you!

I’m allowed to start moving my fingers a bit more too. Basically I straighten them upright, then curl the fingers down; then back up, and out to 90 degrees; and finally do a thumbs up, and practise touching my thumb to my first two fingers. Nothing more than that at the moment, because I can feel it down my arm.

I was quite pleased at how quickly my range of motion improved. While I wasn’t the appointment, my hand was shaking while I was doing the exercises. Now they’re fine.

Also, assuming everything is all good with the cast when I see them next – I’m allowed to go home next week! Very excited. 

Scott’s really happy with how everything else is looking too. The OT is doing up my referral to a clinic up where I live, and I’ll be sending Scott pictures weekly. I have a few questions to ask him about how often he wants to see me, but we’ll work that out next week 🙂

Post-op Appointment – Hans

First post-op appointment with Hans today. 

Everything went well, and he’s very happy with how everything is healing.

He had a look, and confirmed that things at this stage should continue to heal well. I do have an area at the bottom of the new urethra that looks a little unwell and white. Hans said that it looked superficial, and that hopefully it wasn’t the whole way through. Ideally the white part will die eventually and be replaced by healthy skin. If that doesn’t happen though, or that part of the graft is lost, then he may need to take some skin from the inside of my mouth during stage two.

I no longer need my donut! Very pleased. It was great for support and mobility; but because the swelling is going down, it was starting to irritate the stitches and the skin in the area. I’m much more comfortable now.

He also advised I could remove the dressings on my groin/inner thigh, and that there should be no issue at this stage with sleeping with my arm on a pillow rather than fully upright in a sling. I have no feeling in the area with the dressings at the moment, so there was no pain (even though I pulled out almost every hair follicle in the area); and I’ll probably continue to sleep with the arm upright until I get the go ahead from Scott as well as Hans to sleep otherwise. It’s not going to hurt it if I sleep that way for a bit longer.

I’m sending Hans weekly pictures of everything so he can keep tabs on things, but I don’t need to see him again until mid-September. Woot 🙂 hopefully by then it’ll be a fly-in-fly-out visit.

Post-op Appointment – Scott/OT

Yesterday I had my first post-op appointment with Scott Ingram and the Occupational Therapist (OT).

The staff at the OT rooms are really nice, and they made sure I knew exactly how to position my arm for redressing.

Be aware that your arm will look worse before it looks better!

The arm is looking really good, there are a couple areas that we might lose – but at this stage it appears at least 85% of the graft has taken fully (which for such a large graft is really good). I do have an area near the nerve-leash removal site that is oozing, so I have to get my dressings checked every two days now. Luckily this is something mum can do at home, so I don’t have to travel into the city every two days.

After pictures were taken by both Scott and myself, the arm was redressed. Because there is oozing, they want to keep the finger movement restricted at this stage. I asked about going home, and Scott said we’ll review it next week – but anticipate that it’ll be another two weeks before I can go home.

Once that was all done, I went to Scott’s offices (they’re next door to each other. Handy!) for a checkup on all my other bits and pieces. More pictures were taken (I consented to pictures, they’re not a requirement), and Scott had a poke around the top of the phallus because there’s some old blood that’s built up. I’m REALLY glad the feeling isn’t there yet – because he had a good dig around, lol. All looks good though – and that’s the main thing!

I’m seeing both Scott and the OT next Thursday. Hopefully the oozing has stopped!

What did annoy me is this: When I was in hospital, mum asked the physio if my sling should be sitting the way it was (it’s a collar and cuff. One part was sitting down near my elbow, wrapped around my neck, the other on my hand), because of the graft. The physio basically shrugged her off and said it was fine. The 15% of graft that hasn’t taken, and the bit that’s oozing? Yeah, that’s almost all in the area where the sling sat. For those in a similar situation: Put the larger end of the sling – that would have sat near the elbow – around your bicep. Wrap it around your back to come over your shoulder, and onto your arm. You’ll get the support needed without the pressure on the graft. I’ll try to find pictures if this doesn’t make sense. Annoyed, but hopefully now fixed.

2 Weeks Post-Stage 1 RFF Phalloplasty

It’s been great to be out of hospital. For the main part, I’m feeling back to normal – with a couple of minor irritants. My mental health is much better too. I had heard that this surgery stage was a lot more about mental strength than pain – and I totally agree. I consider myself to be pretty tough when it comes to mental-strength things, but those first few days in hospital really knocked me around.  Since leaving hospital, things have gone from strength to strength. I try to get out at least once a day, and if not – I do three little shuffles around the street. Over time the walks will get longer, but they’re good for now.

I think it was just the level of helplessness I felt. I couldn’t use my left arm, could barely move my legs, it was awkward sitting up (because I wasn’t positioned on the bed for sitting), I couldn’t shuffle myself up the bed, I couldn’t feel half of my right hand for three days, I had the catheter in, I had to use a bedpan, etc. It was rough. And to be honest the only thing I could do was have the tv on for some background noise, and try to lose time so it went faster. It ended – of course – but prepare yourself for the vulnerability you will feel.

A bit of TMI: I finally stopped taking my antibiotics and slow-release painkillers this week. A couple days later I was in a fair amount of discomfort and spent a fair amount of time on the loo. I wasn’t feeling constipated (things were still moving along, if you catch my drift), and mum confirmed this wasn’t the case, it was just that my digestive tract had been slowed down significantly by the medication. If I’d been on it for another week, it might have been a different story. As it was though, once I came off the medication – my system decided it was ‘out with the old, in with the new’ time. Pleasant.

Sleep is getting better. For some strange reason I sleep really well in hospitals. I started having issues when I left though. I sleep on my side generally, and when your arm has to be in a certain position, it gets awkward to sleep pretty quickly. I’m currently doing a little half-side sleep, where I roll over about 45 degrees. If nothing else, lying like that gets me to sleep – tiredness does the rest.

Movement

I have almost complete range of movement back through my whole body. Yesterday I actually managed to squat down properly without doing a weird sideways lean at the same time. The key to getting this back quickly is to do new movements – slowly. You’ll be very aware when you’re moving in a way you haven’t for a while.

Arm

The arm is doing alright. I saw Scott Ingram and the Occupational Therapist yesterday, and I’ll write a separate blog on that once I’ve done this one. There is no pain (although it does get uncomfortable for a while after people play with it), and it’s healing well. Hopefully it will continue down this vein. I still have restricted movement of my thumb and fingers because of the splint they have me in; but hopefully I’ll move to a wrist splint soon. I have pressure sensation back in the arm, but fine touch sensation is still coming back. Essentially, I can feel when I run my fingers over the bandage – but I couldn’t feel when they were touching the skin with tweezers yesterday.

Phallus

Going really well. Swelling has almost completely gone down, and there is no pain. I did feel the slightest twitch of sensation right at the bottom left of the base, but I’m not going to start that battle until I’m a bit further along in my healing. I still have the underneath support holding the phallus at 45 degrees, but the little loin-cloth thing I had over the top is gone. I’m hoping the support can come off on Monday when I see Hans.

Underwear is weird!! I’m assuming this is in part because of the support, but it feels strange to be fuller in that area. I’m sure I’ll get used to it pretty quickly!

Size and girth-wise, I’m happy. I’m not getting wrapped around the axles about it though. There are so many factors that could change dimensions that there’s no point in being too happy or sad about it this early on. I am taking measurements though, so we’ll see where we’re at in a year. Something to keep in mind is that Hans works with a shape template rather than a size. Although I’m sure you could request a size, he generally  works with what will work in proportion to the rest of your body. Whether that’s the same for ALT, I don’t know. But it’s certainly the case for RFF.

I’m not flushing the phallus through. This was a surprise to me, as I thought it was standard practice. That being said, I only know one other person who has had the surgery in Australia – so I didn’t have much to go on – and he didn’t flush either. Hans says there’s no requirement to. I’ll ask him some more questions about it when I see him Monday.

Groin

I can see this segment not being here too long. My incisions from where they took nerves from appear to be healing nicely. I say “appear” because they still have the original dressings on. They’re to be left on until they come off themselves; so I just trim them daily (so I feel like I’m getting rid of them).

There is a slight bit of pain in this area whenever I cough or sneeze, and when I get up out of bed. Hans mentioned in hospital that I’d be sore from where they moved muscles around. I would assume this is still the same thing, because it is getting better – it’s just taking its time.

Bum

This is slightly difficult because I can’t see the incisions. I have tape placed over them to aid in keeping the scarring minimal. They’re looking ok from what I can see though.

Sitting has been a task over the last couple of weeks. Every day I try to sit a bit lower in some way, to get the skin used to moving that way. One of the biggest things has been going to the loo. In hospital you have an extra two inches of toilet seat height – which you get used to quite quickly. Then you come home and sit on a normal toilet and it’s like you completed leg day at the gym using only your bum muscles! This is getting easier though – just take it slow.

I’m finding that most of my discomfort from the whole surgery is from my bum incisions. I can sit for hours on the couch without issue, but put me in a chair without much padding, and the most it’s comfortable for is about 10 minutes. Standing is a great alternative, and people will understand if they know the surgery you’ve had.

Anyway I think that’s it for this week. I’ll get onto the post for my appointment yesterday.

1 Week Post-Stage 1 RFF Phalloplasty

0753 – I can’t believe I’m a week post op today. This has felt like one of the longest weeks of my life, but at the same time it feels like it’s gone really quickly. To celebrate, I’m having a lie-in. I’ve been getting up at 0700 every morning so that I actually get up. But I think I’m just going to enjoy being in a nice warm bed for a bit.
0813 – I’m starting to get feeling back in my groin area. Currently I have very little, to no feeling from an area that can probably best be described if I get you to put your hand on your hip bone so that the little finger side of your hand feels like it’s just tucking under the bone slightly. That whole area that your hand touches (including phallus site, pubic area and inner thigh)? Yeah – no feeling.

It is coming back though! I make sure I spend some time each morning and evening in bed to just gently tap and run my fingers over the general area to help stimulate the nerves. I know it’s working because every day u get more feeling back. I’m hoping that full feeling will be back soon, and then I can concentrate on the phallus. At the moment I’m leaving him be – the whole phallus area will still be in WTF!!!!?!!?-mode currently; to be honest no feeling at this stage is probably a good thing!

1756 – I’ve been getting little nerve twitches through my arm during the day, which is apparently a good thing. It’s a little odd because it feels like little electrical pulses.

Again the rest of the day was quiet. I think I’m at the stage where I don’t need to update daily, because there isn’t as much changing daily anymore. I plan on going to weekly updates, but I will do posts when I see the surgeons/OT.

I’ve added a couple pictures showing the difference in my dressing last week compared to the one I have currently.

First dressing

Second Dressing

Day 6 Post-Stage 1 RFF Phalloplasty

0726 – I had a bit of a disrupted night. I was smashing water yesterday and stopped drinking too close to when I went to bed, which was annoying.I’m discovering that I’m getting more feeling back in my side and pubic area, which is increasing the pain I’m feeling daily. It’s still only about a 3 at its worst, but uncomfortable nonetheless.

0737 – Hans popped his head in with the urology team to say that he and Scott are aiming to be here around midday. At 1130 he wants me back in bed with my arm up on a pillow. The nurses will come and remove the back-strap (the hard cast-feeling, paper-mache looking thing I mentioned before). They’ll keep the dressing on until Hans gets here. Once they’re both here, they’re going to remove my final catheter tube. It’s just there to keep the new urethra open, and sort of loops through the phallus, out of a hole near my clitoris and back through the phallus again.

0817 – I’m quite nervous about the first dressing change of my arm. I don’t think there’s infection because mum said at this stage I’d smell it, but I guess I worry that the graft hasn’t taken fully. I over-stretched my arm last night and felt something pulling. I don’t know whether it was the nerves firing or whether I’ve pulled some of the scar tissue on the graft..

I’m going to take pictures – but probably won’t put them up until I can do a decent comparison.

0829 – Pharmacist just stopped in to talk about the medications I’m going home with. I have three days left of antibiotics, three days of a slow-release painkiller and three weeks of a blood-thinning injection. Because I have experience in giving subcutaneous injections and mum will be giving them anyway – it’s not an issue, but something to keep in mind!

0918 – Physio popped in to sort me out with a sling. It’s a little difficult to judge sizing at the moment because I have this massive bandage on my arm, but it’s easy enough to sort out.

1035 – One of the nurses just stopped by with my medication. The bag is massive!! Mainly, I suspect, because the blood thinner injection comes in individual boxes. I think they’ve provided a sharps container too – but I’ll go through it all later.

1609 – I’m discharged! Scott came and re-dressed my arm. He says it looks perfect and at this stage has taken 100%. Hopefully that continues.

The OT came and fit me for a splint. It’s a bit uncomfortable at the moment, but that’s to be expected – it gets moulded to your arm, and mine is positioned differently to how it’s been for the last week. I see Hans in 9 days or so and Scott next Thursday or Friday (I need to call his office to confirm).

It’s nice to be out of hospital

2159 – Showering in a home shower instead of a hospital shower makes being clean that much better. Just sayin’!

Day 5 Post-Stage 1 RFF Phalloplasty

0726 – Early visit from Hans this morning. He’s happy for me to be discharged tomorrow! Took some pictures for documentation, but said he was very happy. Mum and dad created a little donut-looking support thing yesterday for my phallus to sit on – which is significantly better to be walking around with. We removed a heap of the gauze padding, so now I’m just left with my support and a strip of tape across my legs. Hans is quite happy with it, so I get to keep it 🙂
So post-discharge, I have to keep everything supported for at least two weeks. Scott is coming over tomorrow so he can see how the graft is looking. They’re going to try to be here at the same time, so discharge could be anytime tomorrow. Hopefully he’ll let me know so I can advise mum – she wants to be here to talk to them about post-op care.

0910 – Had my first proper shower which was nice. I feel much cleaner. Even thought I’ve been getting a towel wash everyday – it’s not the same. Got to give my pubic area a good wash too which was great because I’ve noticed they don’t tend to wash that area too well with towels and I’m still a little limited in how well I can clean everything after going to the loo; nothing major, it’s just nice to know everything is properly clean down there.

At this stage the main concern is infection – CLEANLINESS!!! So what if someone has to give you a good clean between the bum cheeks – better than an infection! I was pretty embarrassed by having to use the bed pan (they are NOT comfortable!), but as dad said: hospital isn’t real life; and as one of the nurses said: we would rather clean you up after pooping than for you not to be pooping. Leave preconceived notions of privacy at the door and just let people help you.

1338 – Physio just stuck his head in to say he was looking for a suitable sling for me. If he can’t find one today, then he’ll fit me with one tomorrow.

2139 – Not much else happened today to be honest. Got to speak to my lovely wife again, my parents came for a visit and I kept up my walks. I did 4 laps of the ward throughout the day, and they took about 4 minutes each time. Not as sore as I was last night either. I haven’t needed anti-nauseas since the day I got out of bed, and I don’t need the stool-softener anymore. All in all, I appear to be going better than any of the staff expect me to be doing. Looking forward to getting out of here.

I know this all seems a bit choppy, and that I haven’t followed up with some things or explained other things. My plain is to sit down soon and work out the missing links, then do a post on that.

Day 4 Post-Stage 1 RFF Phalloplasty

I’ve been exploring my donor arm. There’s a massive bandage around it – but I can still explore. So my fingers are all exposed, but the bandage wraps right to the top (I assume to stop me moving my wrist too much). There is a hard, almost paper mache-feeling thing on the underside that runs from the tip of my fingers to the bottom of the bandage and wraps around half my arm. The rest of the arm feels like it’s just bandaged. I can feel which nerves have been played with by lightly running my fingers over my arm at the base of the bandage. From what I feel, there’s on in the middle of the underside of my arm and one a bit closer to the elbow side. The arm doesn’t hurt at all – it’s pretty warm though and my fingers get sweaty. I hope they debulk it soon. Not so much so I can see – mainly so I can cool the arm down.

There’s a lot of discussion in the medical field at the moment as to whether things should heal in a moist or dry environment. An example of a dry environment is the way I’ve heard thigh grafts being healed – with some dressing over the wound, letting it air/scab over the top, and trimming the dressing as the wound heals. The moist environment is what I’m having at the moment – wrap it, let the body do what it does best and re-wrap as required. The argument is that wounds heal better in a moist environment. Think of it as your skin healing in straight lines in all directions (which is why scabs get smaller before they heal). It’s easier to heal in a straight line through a moist environment than a dry one. Well – that’s the discussion anyway. It’ll be interesting to get some first hand experience.

I think I may have overdone it slightly yesterday. By the time I went to bed I was starting to get some pain in my pubic area. Nothing major, just sore. This whole time I’ve been in barely any pain at all, so pain is a new feeling at the moment. I listened though. Got straight into bed once I could feel the pain. Today should be better.

0755 – Had a much better night sleep. I’m now on 4-hourly obs and Doppler, which makes sleeping much easier. I kept waking myself up anticipating that I was going to be checked soon – but that’ll stop. No pain when I woke up this morning, but I’m finding that all my packing keeps falling out when I walk. My wife and I have a new game called Gauze Count, where I count how many pieces of gauze have fallen out between phone calls and she guesses how many.

Catheter should be out today which I’m looking forward to. Then I’ll be unhooked from everything. I woke up in the middle of the night and my arm was ridiculously itchy. They said they could give me some antihistamine but that was it – so I said no. I don’t think it’s an allergy, and there’s no point taking meds for the sake of it.

0909 – Who just got out of bed without help? Booya!

0928 – Of course as soon as I got out of bed Hans turned up. I was trying to stay in bed so it was easier for him to see how things were going, but it didn’t seem to be an issue. He’s very happy with the way everything is looking and we’re aiming for a Friday or Saturday discharge! Very pleased. A friend of mine was in for 9 days, so it’s obviously a case-by-case basis. The standing orders say 7-14 days hospital stay.

Catheter is out today too, and I got some bloods taken just to make sure all is well. Apparently Scott will be around in the next day or two to see how I’m going. My arm should be debulked on Friday which will be nice. Hans is very interested to see how we go with a specialised wound care nurse assisting with my dressings (mum). He’s very particular about how things are done post-op – but it works.

I have to get some dressings put back on my bum incisions. They came off a few days ago and they just left them off. It’ll be nice to have a bit of padding there again for a bit.

We talked about arm placement when I get home and he said that although I can put it in a sling, it needs to be just slightly elevated (just above horizontal) and should not be tucked under the chin. It doesn’t matter that it might be more comfortable – it can cut off the blood supply. Otherwise – up and to the side as it is currently.

1106 – I’m unhooked! The catheter is out finally. For those that haven’t had one, they don’t hurt – it’s just uncomfortable. They can hurt if they’re in the wrong place though. So I’m doing a trial-a-void(?) at the moment. Basically you pee into a measuring cup in the loo a couple times to make sure your bladder is working.

The rest of the day was pretty much just sitting watching tv. I passed my trial-void thing. Mum and dad came for a visit which was nice 🙂

Day 3 Post-Stage 1 RFF Phalloplasty

0812 – Had a much better night sleep. Amazing what going to 4-hourly obs will do! Saw Hans this morning who advised that I’m getting up today! Yay! They’re also going to remove the second drain (since it isn’t draining much at all), and I believe I’m getting my IV line removed. The canular will remain though.They’re leaving the catheter in for another day, but I’m getting unhooked slowly but surely.

0948 – I’m up!! Physio came in just under an hour ago and helped me up for the “first” time. I walked around my bed and then sat in the chair for a wash. The aim is to be getting around without assistance by the end of the day. All I have to work on is getting in and out of bed… The rest is pretty easy.

I got a letter handed to me by Hans this morning from a guy called Alex that I’d just like to acknowledge. I stepped out of the blogging side of transitioning a few years ago, and the decision to come back wasn’t an easy one – especially given what this blog covers. I’m pleased to hear that people are able to take information about this surgery from my blog, and trust me Alex – you’ll be extremely pleased with the results

1002 – Census time! I wondered how this would work!

1024 – Riveting stuff.

1037 – I actually think I’m feeling well enough to maybe get my portable DVD player out and watch some shows. I’ve been avoiding it because I’ve been feeling so yucky, but I think even if I just sat for an hour and watched something it’d be good for me. I just realised I haven’t said anything about the staff – they’re all lovely. That’s all I can say to be honest. They are so accommodating and attentive – it’s really nice to see. I know people have had bad experiences with staff in other hospitals – but I have no concerns here.

1141 – I went for a walk down the hall which was nice. A little slow – but we’ll get there. I’ve also had my drain removed and canular resited. So all I have left is the catheter that should come out tomorrow, and the canular which can come out once they’re happy I don’t need nausea stuff anymore. They might even take it out anyway and put me on oral anti-nauseas.

1557 – Got back into bed after the loo. Being able to do something so simple on my own is a great feeling. Looking forwards to my family visiting tonight – I might actually be able to hold a decent conversation with them!

1728 – Canular got removed because it was in an irritating place. I’m now on oral anti-nauseas, but hopefully now I’m up more I won’t need them as much (or at all).