Daily life recovering from Phalloplasty

[XanderJ]

Hi so just under 5 weeks ago the 22/08/17 I had my first stage operation which is Left radial artery phalloplasty and in the first operation they used skin, tissue to form my neo-urethra and phallus. The skin on my arm was replaced by skin from the buttocks the whole surgery lasted 9.5 hours but went amazingly well. When i woke up properly my left arm was nicely bandaged up and was fixed in a position to help it heal so it was raised. I was hooked up with pain relief via IV had a catheter and had something on my calf’s can’t remember the name but it was because i wasn’t allowed out of bed for few days. Everything went pretty great in hospital i had help from nurses the part I found myself struggling was when I got home now no nurses, therapists or surgeons can prepare you for how you will cope at home everyone is different but my main reason for writing this is not for the surgery itself but for the recovery afterwards at home. So I am detailing what I have gone through so far, when I first got home I took my shoes off as I always do which was fine but later on when I wanted to go in my garden for fresh air I realised pretty quickly after a few attempts that I couldn’t put my own shoes on so my first tip would be make sure you have shoes/trainers which just slip on or I have found lazy laces on eBay which are these great silicone individual laces that allow you to just slip your shoes on and not need to fasten laces. You will soon discover that there’s a few things you cannot do that you normally would anyway my housemate helped me to bed as I got quite tired. The next morning I needed to get dressed but needed to figure out how without needing my housemates help first thing was underwear make sure you get a size or 2 larger than you normally wear. My best friend getting dressed was a coat hanger believe it or not if you put your underwear on floor and step into them you can use the coat hanger to pull them up to a point where you can reach with your good arm to pull up the rest of the way. Secondly was socks if someone had told me that I would have a breakdown over socks I would of thought they were mad, however I actually did have a breakdown over socks putting them on myself to be exact but after a few swear words and a cup of tea I had any idea so I grabbed a beaker which was from a blender I will hopefully be adding pictures at the end of this so I can show what I did with it. Any if you put your hand in your sock and place inside the beaker roll the sock down the outside until the toe part of your socks is covering the top of it put your foot in the beaker then grab your trusty coat hanger and use the metal hook to grab the end of your sock on the outside of the beaker and pull the sock up. Now it may not be perfect but it work and it might sound stupid but trust me. Most of the other parts of getting dressed were pretty much the same with coat hanger the easiest to put on without any aid is your t-shirt.

It is also a good idea to wear a size larger than you normally do in jogging bottoms as you will find with the dressings you have on phallus take up a lot of room. The phallus must be kept at a 45 degree angle so that the end of the phallus does not break down, that is simply done with a few surgical pads tucked under the phallus. You will find the end of it gets quite clogged up with dried blood just clean it with sterile gauze in pre-boiled water or saline solution if you have some. I went to see my surgeon on the 21/09/17 and at this point I have to flush the phallus with a syringe of either saline solution or pre-boiled water (cooled). This is to ensure the urethra stays open and free from any debris it is an odd feeling make sure your on toilet or in shower when doing this, reason being is that it goes through your phallus and comes out your original urethra so basically goes in 1 way out the other.

Your arm in this type of surgery is very important and I mean the donor site, although it is sometimes difficult you must listen to your physio and move arm and hand as much as you are advised to do. I have only just started to get sensation in my hand everyone heals differently. I did find gripping a pillow more useful than just trying to close and open my hand kind of like a crutch for your hand it doesn’t really do anything but offers support. Keep on top of your pain medication as even if it doesn’t hurt right now it will at some point so having pain relief in your system is a wise choice. If you find your pain relief isn’t working with you get in touch with your doctor ASAP I had to be put on oramorph as codeine just made me sick and didn’t help the pain. I no longer require it now im just managing ok on paracetamol pretty well and with doing exercises everyday my arm and hand have more mobility.

Walking now you would think you’d be ok to walk about you don’t really think that will take too long to get up and about wrong. Your body is putting everything into healing you can’t just get up and go out you need to gradually build up your fitness. Take your time your body won’t let you rush it listen to your body it knows what it is doing.

The other thing I struggled badly with was being stuck in the house while recovering this really does test your mind. I got incredibly depressed and irritable but found having a good collection of films, tv series and music helped that and being online on live chat to talk to people really helped. Again this is something I hadn’t thought about before surgery.

Well that’s it for now a good mixture of things from daily life in recovery I will add more at later date and keep doing so all the way through my other stages of surgery. If you want to know anything just comment and I will get back to you.

 

[Jani]

Hello Xander.  Thanks for this post as it is interesting to read of your progress and to see that many of your struggles are the same as I had after my surgery.  I had to chuckle about putting socks on as I never would have imagined such a simple task could be so hard to do, but it was and I came away with a new appreciation for those with permanent disabilities that limit range of movement.   Having to do all the normal tasks are difficult at first as you heal and having a housemate available for some of them is a bonus, but it gets easier.  I found that I was constantly tired after any activity I did.  Staying mentally fit as well is important.  I too struggled a bit with being cooped up in the house since driving was not comfortable for a while and I'm not in a walkable area.  I'm sure you are looking forward to the later stages with mixed feelings of getting it all finished and yet having to go through another healing process.  That will all melt away when you're finished and life is back to a sense of normalcy.

 

Cheers,

Jani    

[XanderJ]

Thanks yes I have definatly got a better appreciation for those with permanent disabilities that limit range of movement. I ust wanted to share my experience but not just regarding the surgery itself ut more the day to day things that seem to get forgotten in the excitement about finally getting surgery. We dont tend to think about those little tasks that seem so meaningless during day to day until something happens that makes those little thinks into major obsticles.

 

Thanks

Xander

[Dev]

So much focus, here and elsewhere, is placed on the actual physical changes this kind of surgery brings about.  You're right that a lot of people neglect to mention that it is simply a major surgery, which comes with all the attendant issues after the fact.  I'll admit to being a bit amused when you told me about the beaker solution for the socks - it conjured up a mental image of a chemist pouring you out head first, but the limitations after major surgery are really no laughing matter.

 

It's very good you've decided to share this here to remind everyone that life is definitely interrupted after the various stages of GRS.  I know I, for one, would never have thought of the mundane things that become exceedingly difficult afterwards, which is mildly annoying as I've had major invasive surgery before (goodbye, appendix, may we never meet again).  

 

Thank you for being willing to share this part of your experience!

[VickySGV]

If you go back to February 2013 in this Forum, you can find my adventures in the first few months I was Post Op.  A couple of them really were pretty funny now that I go and read them.  Today if I speak at Trans* conventions and the like, I make it a point to stress that when we go into the surgery we are too excited and have no idea what the immediate life on The Other Side is going to be.  Sometimes it can make us really wonder if we did the right things and can depress us almost to our limits the first weeks and months, but as we heal and forget the pain and discomfort we do realize at last that it was what we wanted and needed.

[XanderJ]

Thank you all for reading and commenting , I just wanted to share my experience with anyone who is interested and highlight those little things that are forgotten during the excitement of and the actual surgery. Everyday my mobility improves providing I keep at my daily exercises. I have just been put on more antibiotics due to a chest infection but being asthmatic and not at my best at the moment its to be expected. I am glad others can relate to the struggles of daily life in recovery such as the sock situation which i still continue to have the aid of my beaker and will probably need after my second operation in 4-5 months time all going well. A new tip i have just come across for any ftm going for lower surgery when you are able to go in the shower if you use a non woven gauze to pat dry under the phallus itself to ensure you get any drainage or it cant get soap build up under there, sorry for graphic image but this is something my nurse has noticed today and suggested rather than using a towel for that part.

 

Thanks Xander