Quote from: Aussie Jay on September 02, 2014, 07:24:00 AM
Made it thru The first 24hrs of surgery and ICU truly are not pleasant! Pain is ok mostly found it difficult because I was so dry in the mouth but they won't let u drink just in case u have to go back to theatre...

Feeling good, albeit tired and washed out!!

Hey, Jay, Congrats!  Glad you checked in. 

Congratuations, Aussie Jay, great you have made it this far, kept us informed on your progress.

Good to hear from you again- fingers crossed for a speedy recovery.

Do they give you ice chips or let you have a wet rag? That is what they did for my son.

Good luck with the healing And your remaining time in Belgium :p It's funny to me that people come so far to my tiny country. Nice to know I'll be in good hands when my time comes.

Congrats!

Best of luck for a smooth recovery

Hey guys..sorry I'm on my phone!! 1st week isn't always awesome huh!! I was going ok but around day 5 I started to get a little infection under my groin/hip incision which is unfortunately draining from under my penis (path of least resistance), started oral Abx, then IV but just not enough... From about that spot there's also a section of my penis approx the size of ur little finger long n wide up the shaft but very superficial that needs to be removed and another small graft used to fix it.

My leg and arm are fantastic...the incisions along my scrotum and vaginectomy site are also fine despite being close to the infection, so I imagine they will be better once I stop leaking. Worse thing is it feels like I'm always wet in the gooch - despite being told I'm not oozing that much. This is where my little medical knowledge is a curse - I'm a paramedic and I've seen some unbelievable wounds...so I always imagine the worst.

So back to surgery tomorrow to have my issues fixed, that'll be 10 days post my initial surgery. Other good news is the infection hasn't really made me sick - no fever, no tachycardia, no vomiting, honestly nothing apart from the oozing puss (so gross), very minor discomfort and hardness under the incision. I'm here alone and have been a little anxious the past few days - which they've given me a little tablet for (one nurse Paul, he just gets it u know, the others do try but he could just tell when I needed a joke, a pill or for him to linger a bit longer for a chat etc) and I've been quite scared that just everything is going to fail after the infection set in and part of my penis started to open etc even to the point where I've barely comes to terms or been excited that I've had a penis for the past 9 days!!! I can't wait to just be thankful and not so worried!!

My very good friend arrives tomorrow morn for the day (shame I'll be in surg for a little bit, but least I'll see her before n after!).. It's been 2 weeks today since I saw a familiar face and left Australia. However I am still very content I have been here alone, I chat to family and friends daily with wifi on viber/fb etc and really only the past couple days I've wanted to see someone and I think it's more coz of that "wet" feeling - excuse if trigger - because it feels like when I used to have my period (I hate that word!) and I think it's more dysphoric/psych as I haven't dealt with that stuff for like 5 years and it was always quite traumatic etc.... I came close to a breakdown last night - disappointed because I prepped well for this - gym, food, saw my shrink etc, I just hate having no control. But I asked for my little pink relaxing pill and tried to sleep, failed so have slept all day today haha...

So that's where I am at. They assure me they've seen way worse and after my infection is drained I'll be much, much better and able to heal properly. So fingers crossed for round 2!! Cheers brothers, Jay.

I hope for the best for you, Jay, sorry you are having a problem.  Hopefully it will be just a little set back and the surgery tomorrow will clean things up and will get back on track with your recovery.  I know to can get started thinking about all the bad things that can happen.  You are now seeing what it is like to have your own penis down there and don't want anything to happen to it.   I can see where the draining would feel like you are having a period mess down there; that is why I like using tampons so you wouldn't feel the messiness on the outside.  Good luck and hope for the best for you. Keep us informed.

Thinking of you Jay and hoping alls going well. Glad they're sorting out your repairs so quickly- over here they let it take care of itself (which takes weeks of dressings and tablets) and then do any repairs needed at your next surgery! Keep holding it together- not literally- it's all worth it!

Glad to hear you're doing ok things could be worse and your issues should hopefully be fixed without any further probs you'll soon get to appreciate your new limb!

So things got a little more difficult before they got any easier...

So I had RFF on Sept 1 in Belgium.
Day 5 I developed a pretty bad, rapidly developing abscess under my r) groin/hip incision.
Day 12 (I think) the Abx hadn't done enough and I needed to be surgically debrided. During which a section of my penis was necrotic and needed removing (part approx the size and width of your little finger) and part of the hip/groin incision was left open to drain, as was the penis.
Wounds were cleaned and packed twice a day where needed. After some improvement on Day 19 I went back to the OR with the plan to take a groin free flap (initially) and use the existing urethra from the RFF which was still ok (but not perfect). However I woke up in pretty much the same condition as I had gone in - they were unable to do the groin flap due to the infection still present in some of the tissue.
So another week(ish) of cleaning and wound packing - none of which was overly fun by the way, the foley catheter was still in situ so sitting was unpleasant, they let me up to walk for a couple of days as I've been on pretty much bed rest for a month, and of course I was worried as fk!!!
Anyway - Day 25 saw me back in the OR as everyone was very happy with the tissue and the plan was now a groin pedicle flap where they used the skin to recreate the urethra and then took another graft from my leg to cover the rest of the flap (like a quarter/bottom side of penis) saving what they could of the original RFF.
So it is now 31 days post RFF - vaginectomy site, scrotum, arm and original leg grafts are fine, apparently always have looked quite well, apart from a little sweaty, itchiness I get which I'm told is normal.
I am also 7 days today post groin flap creation/revision - and although it doesn't look exactly as I pictured (yet) - the tissue is healthy, the urethra looks good and the graft is healing well, aside from a small blood blister which I am told will solve itself. But for aesthetics I am told I will need a revision (fine with me, at least I have managed to keep everything I have been fighting for).

It has been a massive test...no wait, saga. I spent the first 2 weeks here at the UZ alone (by choice as I had arranged for a friend to come at the 2 week mark to maybe help me once potentially discharged for a week), but just as things were getting bad with the infection that friend arrived, which was a gift from who or whatever is looking out for us all!! Also, via a Yahoo! group I think, a younger fella (Alex) started emailing me and then facebook chatting, before he could get up and actually come to visit me as he was healing well from ALT a week after me - he was really great and in turn introduced me to another bloke and basically helped waste the days and who are still coming to visit me.

So I have my dressings and wound packing changed once/twice a day at the moment. I am still on bed rest - I have been up for visits to the bathroom and to sit in a chair but since the start I can count both of those occurrences on my hands...and maybe a couple of toes. So I can't wait to walk. The next dilemma is getting out of the hospital. Actually just had a discussion with a social worker as to my plans after I'm discharged. Potentially it will be next friday (10th or so) but I still need to have catheter removed and see if I can actually urinate etc so I have refused to make any plans (as they have just not worked for me so far) and now I set goals instead...

So things are definitely better - this is the first time I have turned on my computer in a month (unheard of for me). I've only really recently started to feel more like myself, listening to music, playing games and puzzles on my phone etc. I need to change my flights home (thankfully I sprung for business class and fully flexible), I need to contact my boss as I have honestly been avoiding that as I have no other leave to take so it will be leave without pay I imagine (pretty sure they can't fire me for getting sick on my leave, no matter what I'm doing).

So that is where I am. I feel better in myself and I am more me - I speak or message friends and family daily and all have commented on the change in me and that I sound more happy etc... Decisions about where to stay, if I can get someone else over to help me etc and the ole how much is it all going to cost me chestnut - thus far the hospital stay has been paid for up front so really I haven't had much expenditures at all since being admitted....maybe up to 100 euros for snacks, drinks and some hand cream coz holy hell is my skin dry in here...

But just wanted to say thanks for being there guys. There have been some dark days and not gonna lie a few tears shed.  I did everything possible within my power to be in good shape for this - ate right, hit the gym, quit smoking 2yrs ago etc etc but I honestly believe everything happens for a reason....whatever that may be. I was prepared for fistula, stricture, pain, non healing wounds, limited ROM of my arm/hand but the infection and abscess completely blindsided me, ok I guess the extent to the effect a localised infection had on the tissue I desperately wanted blindsided me, I knew infection was a risk. But it is done now. At the moment everything looks good and I just hope they let me up soon to walk coz I'm getting a sore ass!!!!!

Thanks again brothers, I sincerely hope everyone recovering at the moment is well on that road.

Jay

Sounds like it's been a tough road for you, so sorry to hear that

But it's good to know things are looking better! I wish you luck for the rest of your recovery! I bet you can't wait to get home, eh?

Thanks mate... I have never been so eager to go home to my little town in Australia in all my life!!!!

But I'll get there in a few more weeks

Might even take a week to stop by my folks place for a little home cooking and family TLC. I need a damn holiday that doesn't involve a scalpel.

Thanks again guys,

J.

Hope everything keeps getting better for you Jay - I know what those dark days feel like but once everything starts to heal properly they are quickly forgotten. Take care and keep in touch- AJ

So apparently I wasn't done with surgery - I managed to rupture an artery and had to be rushed back to surgery yesterday (Saturday) morning. Just changed position from laying to sitting on the toilet then a sudden onset of severe (like crying, shaking etc) pain and rock hard swelling just between my leg, belly and the top of my penis. I was relieved to hear the surgeon say that was all ok and that this was basically unrelated and unfortunate...

So back to bed rest today. Still hoping to stand and maybe attempt to void tomorrow but honestly my swelling I still have a little and it is uncomfortable...

So the saga continues... I think I'm going to write a book. If I just don't block all this out. So here's to healing well from now!!!! I'm really ready for a break now....

Still sending you best wishes and healing vibes. Just believe that in a few months you will have forgotten most of the bad times

Thought I'd just update again quickly - I was released from the hospital yesterday and am now in a hotel. A friend is coming over to meet me tomorrow and hang out, help me with baggage etc to hopefully go home sometime around the 29th Oct. I am happy and enjoying being alone for a couple of days after 6 weeks in the UZ.

I can't complain about any treatment I received - they are very good, some more knowledgeable than others but that is gonna happen everywhere. I was/am also scared - almost feel institutionalised! I still have dressings to do and a wound I'm worried about but gotta try and stand on my own some time - can't bloody stay there can I!!! Plus it's nice to get outside - again for the first time in 6 weeks!! Plus hospitals are for sick people - I am recovering...or so I keep telling myself and I'm trying to be as "normal" as possible. I still have the swelling from my last surgery, it just makes it a little uncomfortable to go from laying to sitting to standing etc.

So I'm finally out. Think the healing is heading in the right direction (or so they told me)!! I see the Professor on Friday and will have a better idea of what to do/expect/when I can leave to go home. I woke up in the hotel almost not remembering where I am!! Haha... Of course I wish things had have been different but I definitely have no regrets - I was just unlucky I think... I couldn't have been more prepared physically, mentally etc but maybe I just saved someone else who may not have been able to deal with having some trouble with their GRS who knows...

But I believe everything happens for a reason - I just wish I knew what this one was!!!! I am mostly just grateful they were able to save most of my RFF after the partial necrosis due to the infection and although things now don't look perfect and I'll need a revision, I truly believe there's nothing anyone could have done to prevent my journey.

Thanks for the positive vibes fellas - I really do appreciate it.