Travelling Home

I didn’t update yesterday, partially because I was flying home, and partially because when I got home I just wanted to enjoy being there. 

The travelling itself actually went as bad as I thought it would be. The trip from my parent’s to the airport was pretty good (mainly because of the seating in the car),  and I was in very little discomfort by the time I got to Brisbane airport. 

I didn’t realise just how far there was to walk at the airport. Looking back, I should’ve gotten a wheelchair, because that was a really really long way to shuffle. It was easily the furthest I’d walked since surgery, and probably twice as long as everything I’d walked in that week combined. By the time we got to the gate, I was already pretty tired. I went through as part of the people who need extra time to get on board – which was also a good plan, because it took ages to shuffle down to the plane. 

The flight itself wasn’t too bad. The plane was pretty empty and I had the row to myself; so after the seatbelt sign was switched off, I lay across the seats to take pressure off sitting. 

Being home is great. I think it was definitely the best decision for my mental health – it was ridiculously hard being away for that time. I’m a bit annoyed that I’ve bled through the dressing on my penis (probably from travelling), so my wife will need to redress that later. 

1 Week Post Stage 2 RFF Phalloplasty

Today was a better day than yesterday; for a couple different reasons I think…

Firstly, I hit one week post op today (yay). Just the realisation of hitting that first little milestone will do wonders for your mindset. 

Secondly, I’ve realised that when the twitchy I-need-to-pee feeling gets bad – it eases when I go and lie down for a bit. This in turn led to me resting a lot more today, and as a result I’m feeling much better for a lot longer. 

I spoke to the missus last night about how I was feeling, and I’ll be going home tomorrow. I have appointments on Monday and Tuesday, and even though I could fly back Sunday evening and still get back in time – I would rather have the three days to recover before having to go anywhere again. So essentially, is it too early to fly? Probably. But in the long run, it’s going to be less difficult on my body.

Medications

I feel like this is an important one for the comparisons for now.

At the moment I’m on:
– A slow-release painkiller twice a day (morning and night);

– Antibiotics (Amoxycillan) twice a day (morning and night); and

– Paracetamol every 6 hours

When I finish my current antibiotics, I have a different set to take. The slow-release painkillers are only for the next three days, and the paracetamol are until I decide to stop taking them. At the moment the paracetamol are being taken more for comfort than for specific pain relief. 

Dressings

Another one that’s important to note for now…

Glansplasty site:

– What looks like a massive steri-strip

– Opsite dressing

Phallus:

– Jellonet over graft site

– Sterile gauze over whole head of phallus

– Opsite dressings covering the whole of the phallus, including half the shaft, the tip, and securing the penile-catheter in place (helps keep it waterproof)

Suprapubic Catheter Site:

– Gauze

– Opsite dressing

Everywhere else:
– Nothing

Movement

Movement is returning a little more with every day that passes. I suspect by the time I fly back to Brisbane next week, I’ll be back to full range of motion. 

For now though, I’m still walking like John Wayne and taking things very very slowly when it comes to picking things up or getting changed. I can kneel down, but it’s a movement that involves my entire body. 

Full Thickness Skin Graft (FTSG) Site

The graft site on my side is still fully dressed at the moment, so I still have no idea what it looks like. 

Phallus

He’s not looking as beaten up as I thought he would. I was expecting a lot of bruising, and was pleasantly surprised at how little there is (some minor, near the base). The swelling is going down quite quickly! This unfortunately has led to the dressing covering everything to get looser, which in turn has probably aided in the oozing of old blood and urine down the side of the catheter.

Got another look today at the glansplasty site which was cool. I’m pretty impressed at Hans’ work, and the swelling on that has come down quite well too. 

The FTSG itself is quite difficult to comment on. It’s still fairly bloody at the moment, but it didn’t come off with the dressing change – so that’s a plus!! Given the arm debacle, I’m fully prepared for this area to take a long time to heal. 

I’ve still got some – I’d call it more oozing than bleeding – coming from the tip of the phallus. Most of this seems to be old blood thankfully, although there may be some spotting of new blood there too. We’ll see how things go after the dressing change. 

Scrotum/Perineum

Another slightly difficult area to comment on. From what I can feel, there doesn’t seem to be much swelling besides the actual suture lines. I can’t feel any fluid buildup, and there is only really some spotting of blood. 

Not the prettiest area to look at right now, but that’s mainly due to the bruising. 

Sensation

Wow! This surgery woke up almost every nerve in that area, and they’re acting like one of those really bouncy balls you had when you were a kid. You know, the ones that you bounce on the ground and then run for cover because you can’t stop the bloody things from bouncing everywhere? 

Thankfully, a lot of the hypersensitivity has calmed down over the last week – so I’m closer to where things were pre-surgery. Random things will catch me out though, like catching the catheter tube in my penis while putting pants on, or sitting down in a different position. It doesn’t hurt, but the nerves jut randomly shout “HERE WE ARE!!!” 

Whilst very unnerving for anyone trying to do anything remotely helpful in that area, and quite uncomfortable for me, I’m hoping that this means eventually I’ll be looking at a pretty high level of sensation throughout the whole area. For just a couple of days I had feeling in areas that I was barely starting to get feeling in pre-stage two; and that’s pretty exciting.

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I think that’s pretty much it for now. I’m going to start doing weekly updates for comparisons, but I’ll still update when something goes on between then – it just feels like I’m almost at the point where I’m going to be writing three lines worth of information most of the time, but I know there are still things that are going to happen that need to be commented on. 

6 Days Post Stage 2 RFF Phalloplasty

Nothing really happened today. 

I slept through from midnight until 5am when the dog started barking, then took my pain relief and went back to sleep until past 8 – so that was nice. I’m hoping that tonight I’ll get an even better night’s sleep because I plan on going to sleep a bit earlier…

I spent most of the day watching tv, playing games and smashing water. After 3L all I achieved was the requirement to empty my leg bag every 10 minutes for an hour. My urine was only clear for about 20 minutes before it started changing colour again. I think I was petty dehydrated yesterday; dad thinks it could be anything from passing waste from my medications, to anaesthetic passing, to just the fact that my body is doing the healing thing and just needs more fluid. Regardless, it looks like I’ll be drinking another 3L tomorrow. 

The bleeding has slowed considerably. The drain sites are barely bleeding at all, and the phallus isn’t bleeding as much either. I sent Hans pictures of my penis, and asked if he wanted the dressings to remain intact or whether mum could change the bits that were bloody. He said he was happy for mum to change them tomorrow, and to let everything air for 20 minutes before redressing. It’ll be nice to have it redressed, because it’s looking pretty manky at the moment. 
I was doing really well emotionally until about dinnertime, and then I just suddenly lost all desire to put effort into anything at all. My mood dropped considerably and I got fairly short-tempered and crabby. It wasn’t until I talked to mum about it that I managed to click that: although I hadn’t done very much today, it was still the most I’d done in almost a week; and I’d had major surgery thrown in there too. Basically I had just worn myself out and it was time for bed. 
I’m also a bit emotional I guess because I’m really missing my wife at the moment. We haven’t spent much time together over the last couple of months due to work and life commitments, and I really just want to be at home with her. I’m due to fly home on Friday, but a part of me is concerned that I’m not ready to go home yet. 
I mean for goodness sake, I’m exhausted after sitting in a chair all day instead of in bed! Imagine the effort that goes into the hour long total drives to and from the airport, not to mention the 2-hour flight, AND the fact that I hate flying anyway, AND the fact that a week later I’ll have to do it again in reverse. 

… Anyway, I’m sure it’ll pass. And if it doesn’t, I’ll just have to look at flying a couple days later. I don’t want anyone to feel like things are going badly, because they’re not. Movement-wise I’m getting better daily, the muscle “I need to pee” spasms are less than they were, the bleeding has all but stopped, and I feel significantly better than if I was to compare where I am now at where I was for stage 1… I’m just feeling a bit homesick. 
To bed for now though, and tomorrow is another day. 
Edit: I keep forgetting to mention that of anyone wants any specific information, please feel free to ask. I write everything ad-lib and it doesn’t follow any direction other that what I think about when I’m writing, so I know I’m probably leaving things out. I’d much rather have a really long post with all the things people want to know about, than a shorter post with the ramblings of a madman in it.

Day 5 Post Stage 2 RFF Phalloplasty

Morning
I’m leaving hospital today!! Hans just came in and had a look at everything to see how it’s going. I’m oozing again, but that’s mainly because of the anticoagulants I think.He redid the dressings on the glans too, so I got to see that – very cool. Swollen, but very cool. I also have a LOT of feeing happening in that area… I think the surgery woke all the nerve endings up.

He still thinks I should be good to fly on Friday, and I have to come back and see him here at the hospital on 3rd March for the first urethragram. Basically they put some dye through the urethra to see if there are any holes. If there are – the catheter in my penis stays there for another week or two, if not – it can come out. 
One or two weeks after that, I have to come back for another test to get the suprapubic catheter removed
Drain removal
At 0930, the nurses came in and clamped off my bellovac drain in anticipation for removing it at 1000. They do that to try and get any excess out of the drain prior to removing it.

First thing’s first: a bit of a clean up. Because Hans was moving things around earlier, I’m doing a bit of bleeding. There’s a bit at the tip, and some at the drain site. 
Next, the dressings were removed from my suprapubic catheter site, and everything was given a good clean with saline.

After that, the drain was removed. As per the usual drill by now, the stitch was removed and the the drain was pulled out. I was warned it would feel weird, and I have to say – I’m sort of glad they warned me. I’ve had a number of drains removed from a number of areas over the years, and I have to say – this was the strangest feeling yet.
As most of you will probably know, drains are quite long. In this instance, the drain is wrapped all through the vaginectomy site; which on its own isn’t too bad, the weird feeling is when they’re pulling the drain out and you can feel everything in varying degrees because there are areas with full feeling, areas with little to no feeling, areas where sensation is displaced to other areas of the body etc etc etc – very hard to describe, but very weird. 

Anyway! After the drain came out, everything was redressed and cleaned up again. I’m bleeding a bit from the drain site, but I honestly don’t know what else can be done with it except letting it calm down on its own. 
Afternoon
I’m not longer in hospital! Just chilling out at my parent’s place now. The drive was pretty horrible, but only from a bumps perspective – there’s really not much that can be done about the state of some of Brisbane’s roads…
I’m doing a fair bit of bleeding at the moment from the drain site. I bled straight through the dressing that was on it initially, and the replacement wouldn’t stick – so they didn’t bother with it. It’ll stop bleeding on its own in time. 

I was sent home from the hospital with a wide variety of things… two leg bags for my catheter (I’ve attached pictures, excuse the urine) 15 overnight catheter bags, disposable underwear, pads of various sizes, a whole heap of gauze and stuff like that. I was also sent home with a vast variety of medications. 

Two hours after getting home, and I’m still in a bit of discomfort. I’ve taken my paracetamol 30minutes early just to try and help everything settle down. Being away from the hospital is taking some getting used to – mainly that things aren’t at the handy heights and within reach as easily as they are in hospital. 
Evening
Just had my first proper shower since surgery. We ended up wrapping my penis in a ziplock bag and taping it to me so it didn’t get too wet. It was really good to have a proper shower… to actually wash my hair and my back, get rid of all the old blood that was everywhere…

The staff at the hospital were great for 99.9% of things, but I really could’ve used a hand washing myself with those damned towels. I couldn’t reach lower than my knees, I couldn’t wash my back, between my legs got nowhere near the amount of cleaning that it needed… ah well, in the past now. 

That’s it for now I think… to sign off: I’m glad I’m not in hospital, but I feel completely wiped out. Hopefully tomorrow will be a better day…

Day 4 Post Stage 2 RFF Phalloplasty

Morning

Hans just swung by. He took down some of the padding around my scrotum to have a look, and said he’s happy with how everything is looking at the moment. I mentioned the whole feel-like-I-need-to-pee thing, and he said it could be a few things from nerve connections to the urethra still trying to act like it’s working. He said if any urine starts looking like it’s bypassing the suprapubic catheter, he’ll put the catheter in my penis on free drainage. He also said that he’ll take down the glansplasty dressing tomorrow and have a look. 
By the sounds of things, I’m looking like leaving hospital tomorrow. I’m not as bummed out by that prospect as I’d thought I’d be… I think the more time goes by, the more I’d rather err on the side of caution when it comes to this.

Evening

Not a bad day on the whole. Spent most of it watching tv or walking to and from the elevator and around the ward (3 times).

My brother came for a visit, and we had a good talk about things, which was nice. We don’t really get much chance to talk to each other – especially now I’m not in Brisbane anymore, so it was good to have a catch-up. 
I’m not really oozing too much without the penrose drain in… while I’m pleased about this, I’m also worried that it’s just not bleeding for some other reason. Hopefully the more time goes by, the easier I’ll feel about everything. I think I’m just hyper aware of the possibility of things going wrong.
I got my anticoagulant injection tonight too. I didn’t get it last night because they wanted to give my blood levels some time to get back up there, without me oozing it all back out. I’ll double-check with Hans tomorrow whether the plan is to do them every other day or something – but a part of me is pleased I’ll still be getting them… the chance of clots are significantly reduced. 

Day 3 Post Stage 2 RFF Phalloplasty

Morning

Had my first dose of oral antibiotics last night. First issue: the script given was in the same family as the antibiotics I’m allergic to. The nurses checked with pharmacy, and they said that because I was on amoxicillin 6 months ago without issue, I can take it now. 
I went for a walk out of my room this morning!! Very exciting. Just went for a very slow spuddle to the elevators and back, but it felt so good to be out of bed and going somewhere – I think I’ll make it a fairly regular occurrence…
Evening

Ended up doing two walks to the elevator today 🙂 I didn’t want to overdo it, so I just went twice. Thankfully I don’t appear to have oozed much as a result, so I have a lot more confidence there.

My blood tests came back today showing that my blood count was a bit lower than yesterday. As a result, they’re not giving me the anticoagulant injection this evening. 

Pain wise, I’m still not really in much pain at all. Every now and then I get a random twitch of nerves, but that’s about it. I’ve also noticed that when I need to go to the loo, I’ll feel the muscles twitching from where my old urethra ended. It’s quite unnerving, because it sort of feels like I need to pee… but I know that’s not what I’m feeling.
I explored my surgical sites a bit more today and discovered why it was so hard to figure out what’s going on there… so I’ll just explain what I’ve got so far…
Graft site: I have an incision on my left side from where the full thickness graft was taken for the glansplasty. It appears to be a couple inches long, but it’s hard to tell because of the dressing – I’ve added a picture, there’s blood: you’ve been warned. 

Phallus: He’s all wrapped in cling wrap and dressings at the moment, so I haven’t had a look at how he’s going. I’m hoping that’ll be over the next couple days. He is, however, EXTREMELY swollen… The tip is looking twice the usual size, and swelling eases the further down the shaft you go. 

Scrotum/clitoris: Yeah I can’t see much at all. Between the dressings, the swollen phallus, and the blood that I can’t clean off because of the dressings/phallus – it’s very hard to see anything at all. I have two drains in this area: a Bellovac drain in the pubic mound – that draws blood out of the area (think similar to chest surgery drains, but bigger), and a penrose drain in the vaginectomy cavity that’s on open drainage. I’ve added a picture of the bellovac drain, there’s blood: you’ve been warned.

Day 2 Post Stage 2 RFF Phalloplasty

0808
Still a very broken night’s sleep, but much better quality of sleep. I was up a couple times trying to go to the loo, but with no result. The nurses were going to ask Hans about using a laxative a big later on, but I finally went at about 7.30am. 

Thankfully there wasn’t much straining to do, more of a make-sure-you’re-sitting-the-right-way kind of thing. 

0915
One of the urology doctors just popped by to see how I was doing, he’s said I can be unhooked from my IV line. I still have a canular in, but that’s only for my antibiotics. 

1050
Hans just came around for a visit. He says I’m looking much better than yesterday, and he’s pleased with the level of drainage I’m having. I should have the canular out tonight, and they’re doing another round of bloods today and Monday. 

I’ve been told I can wander around outside my room! I can even go downstairs if I want, as long as someone comes with me. 

We talked about me going home on Friday, and he said he still thinks I’d be ok to fly back, but it obviously opens me up to possible infection and retention of fluids in the vaginectomy site… I think I’ll see how I heal between now and then. 

1652
Goodbye canular!

1838
So today on the whole wasn’t a bad day. I was in and out of bed quite frequently, and had a semi-decent wash this morning too – which always makes you feel better. 

Unfortunately I’ve been in my head a bit today, so I’m feeling a bit down right now. I guess I’ve gone back to where I was mentally with stage 1, and it just feels like there’s so much healing to do. It’s strange to think that I’ll be out of hospital soon and back home not much further down the track. Logically I know that I’m only just over 48hrs post-op, but logic isn’t winning today. Best I can do is just try to keep myself occupied and hope the time moves quickly and without issue. 

Day 1 Post Stage 2 RFF Phalloplasty

0903
Had a yucky night. Between obs, discomfort and bleeding – I didn’t sleep much. At about 2am one of the nurses found I was lying in a pool of old ooze. It turned out my drain was clamped off and not draining – which I’m annoyed about because I asked about it to the day staff and got told it was fine… Anyway… Once the drain started doing its thing, there was significantly less blood on the bed. 

Hans popped by around 6.30am to see how I was going. Apparently I lost 800-900ml of blood during surgery – which is probably why I feel so dopey still. The main blood loss occurred during the vaginectomy; because it’s such a vascular area, it bleeds quite a lot. I’m on daily full blood counts and electrolyte tests from now until Monday.
I’m allowed to get up today! Very pleased about this, if not nervous about bleeding everywhere. I’m allowed to walk around my room today, and then probably go for walks around the ward from tomorrow onward. I have an open drain in the vaginectomy site, so if there’s any buildup of crap it’ll just come out of there. 
1044
Just got up for the first time. The plan was to get up while the nurses made the bed, then go into the bathroom to brush my teeth – but I was a bit dizzy, so I just stood up for a couple minutes instead. Getting up was pretty painful, but mainly because I’ve got dressings shoved everywhere, and I’m really stiff. After my standing, I had an Endone for pain relief. 

1340
Just got up again. This time I managed to stand up and walk around my bed. I’ve been told I can get up and walk around on my own, and I feel more confident in my ability to do that now that I’ve managed to stay upright and walking.

Getting up is still a bit painful, but hopefully the more I get up, the easier it’ll get. I noticed when I got into bed this time that I have some blood running through my catheter, so I’ll need to keep on top of my fluids to help stop any clots. I’m on anticoagulants, but every little helps.
1819
Had a bit of a nausea spell at dinner time. Initially I thought it was the food, but I think it might be due to needing the loo. I’ve been prescribed some Movicol, and now it’s just a matter of waiting for that to work. My parents and brother visited today – but I wasn’t much company, as I kept falling asleep. Hopefully tomorrow I’ll be a bit more awake. 

2052
Got to speak to my wife today too. Unfortunately she wasn’t able to come down whilst I underwent surgery, and I didn’t realise just how much I needed her here until I spoke to her. I can’t wait to go home. 

Nothing yet on the Movicol front, so it’s going to be a fun night.
2146

Still nothing. 

I snuck a look at how things are looking down below. Right now – it’s not pretty, lol. My penis is about twice as thick as it was (because of swelling), and my new scrotum is looking pretty beat up too. It’s hard to get a good look because of all the dressings, but I’ll keep looking and finding more out. 
I think that’s me done for updates today, hopefully I’ll be able to stay awake longer tomorrow!

Stage 2 RFF Phalloplasty – Surgery Day #2

1817
I’m officially post stage 2! Surgery went for 6 hours, and I was brought up to the ward around 4pm. I briefly saw Hans in recovery, and he said that everything went well. They didn’t end up taking a graft from the inside of my mouth thankfully (just another thing that needs to heal otherwise).

I’m in little pain at the moment, although I expect that will change as time goes on. I’ve also lost feeling in my right hand again from the arterial line they put in – thankfully it’s just in the fingertips this time though. 
I have a lot of discomfort in my left leg at the moment. Feels like someone has punched me in the calf. The nursing staff have advised that it’s probably from being in stirrups for so long during surgery. Initially I couldn’t move my foot at all because of the pain, but it is slowly getting better. I also appear to have numb little toes on both sides – again I think it’s from the stirrups.

I was initially on half-hourly obs, but I appear to be on hourly ones now. Suits me – more time to try and sleep. 
1916
Hans just came around for a bit. He explained that when you have a vaginectomy it’s not uncommon to bleed a bit – sometimes requiring a transfusion. My body didn’t disappoint with regards to bleeding, but they didn’t give me a transfusion – which is probably why I’m so dopey at the moment. He said the surgery would’ve taken 4-5 hours had it not been for the stricture repair, and at the moment I’m looking like getting out of hospital on Monday – but it’s a day-by-day thing. 

Surgery Day – Stage 2 RFF Phalloplasty

This is going to run much like stage 1’s surgery day post went. I toyed with the idea of posting live updates, but it was just one more thing to check was being done correctly whilst still somewhat under the influence of anaesthetic
0515

I’m awake! Woke up slightly nervous this morning. Cab is booked for 0600, although I know it’ll probably turn up a bit earlier. 

0620
Have arrived at the hospital and was told by reception to head up to level 1 for admission. The staff are as friendly as ever, and definitely seem to understand the nerves thing. Just waiting for the nursing staff to come out now…

0655
All admitted. The nursing staff went through the usual checks and balances – height, weight, allergies, initial set of obs etc. From there I was moved into another waiting room, where I’ll eventually get called forward to get dressed and climb into a bed.

I’m dressed in shorts, thongs and a singlet (for ease of dressing), so I can’t wait to get a warm blanket!!

I’ve got a ratty-looking tubigrip on my arm at the moment, basically to keep the compression as long as I can. I know they’re probably going to remove it for surgery – but the longer I can keep it on, the better. And this way they can just throw it out and I don’t have to worry about where my compression garment is.
0702
Hans just popped by to check in before surgery. He’s got a meeting before we start, so he just wanted to let me know that they were going to get me ready and in theatre but he probably won’t see me awake until I’m post-op. 

Nerves are probably at a 3-4 at this time. 

0712
So I’m all gowned up with my sexy underwear, and I’ve got my warm blanket in the preop area. Nerves are still up there, but they’re mainly manageable. Now I just can’t wait to be out under so I can stop being nervous lol.