5 Jan 2016

5/1/16

Since my last post I have been readmitted to hospital. I had difficulties breathing which turned out to be a litre and a half of fluid on my right lung which was (and still is) infected. Scans also showed that the lung had collapsed. Other tests showed infections else where too. Which of couse meant I was back on drips and iv antibiotics. I somehow managed to escape for Christmas although on my birthday - new years eve - I was in a&e with breathing difficulties again. This time they feared a blood clot once they had ruled out an increase of fluid, a ct scan later they were able to rule that out luckily as other tests showed positive. My lung is still collapsed which is causing the breathing problems and the fluid is infected again.

I'm desperate to go back to work as I'm bored of sitting around on my own. My mind wanders when I have no distraction and I'm quite depressed over the situation as it is. Work would hopefully be a good distraction. I obviously have many fears of going back, how I'm going to deal with the bag on a day to day basis alone is enough to never leave the house again, the noises it sometimes makes are highly embarrassing and obviously other issues.

I'm still not any closer to being able to change the bag myself. The stoma nurse changed the size of the hole last time and made it much smaller which means you have to touch the stoma to get everything in place. I'm relying on mum to do this even though she keeps saying I need to start doing it. I think because I know it's not permanent I'm able to never have to do it and because of that it makes me not want to do it more than I already don't want to. I don't want to have to think about it anymore than I have to and I would find it distressing to have to change it myself. Emptying the bag is enough to deal with.

I think it will get easier as it becomes part of my routine, but some things I just don't want to have to do and if there are other ways around it then I will stick to them.

12 Dec 2015

12/12/15

So where do I start....?

On the 17th November I had really bad stomach cramps start at around 2pm at work. I thought it was just hunger as I had been busy but after eating my sandwich I realised it wasn't! 

Early hours of the 18th I started to be sick and this continued for 36 hours. In between I had a GP out and a paramedic, both who said it was the winter bug. As I continued to be sick we rang for another GP to visit who this time decided to send me to hospital. He was really good and managed to book a bed for me the other side of A&E in the Surgical Assessment Unit, this would cut out many hours of waiting.

Once the ambulance arrived, I was taken downstairs in a chair thing as I could not walk or move much due to the agony I was in. The pain had reached a good 9/10 and my windpipe was closing which was obviously making it difficult for me to breathe. Once I was in the ambulance I was wired up to lots of things, including fluids and heart machines. This took a good hour outside my house. 

I don't remember much from the SAU apart from the total agony I was in. I remember arguing with one of the doctors as he wanted me to lie down so he could examine me and I just couldn't lie down. I understand he had to be firm but at the time the pain would not let me. They wanted to put in a catheter to keep an eye on my kidneys, this however meant I had to explain the fact I am trans. The room was not private at only separated by a curtain which made me feel uneasy. I hate the fact that I have to explain each time, being stealth stops me from having to explain my history to everyone so this is not something I'm used to having to do in a long while. At this point then they thought it may be pancreatitis, more tests later and negative - it wasn't.  Eventually, they gave me morphine so they could examine me further. From this point forward I do not remember anything.

I wake up several hours later not knowing where I am etc and very lost and confused. This is all a blur to me. All I can remember is thinking I was in a cinema watching Wonkey Donkey. I remember my aunty Jan and aunty Mandy being there but no-one else. The truth is, I'm in critical care with two aunties, Soph and my Mum. I was to spend 6 days here. I was in a very poor condition and lucky to be alive. The operation left me with an ileostomy stoma which was the worst case scenario. My bowel had attached itself to the scar tissue left from the hysterectomy and had twisted itself to the point of killing itself. I have had 6cm of bowel removed but we are hoping for a reversal in 6 months max.
So, moving on to the next part of my hospital journey. After 6 days of being spaced out, tripping and hallucinating (this was terrifying, I remember being stuck on a bus in Wales with an awful annoying song on repeat, I had been to Australia and had sky dived.) I was taken off morphine and moved into intensive care also known as SSCU - Special Surgical Care Unit. Again, I would spend 6 days in here. I was better now the hallucinations had stopped however I was still very confused and lost. At one point I did not recognise my own girlfriend which was devastating, I did not trust the doctors as I did not believe they were doctors. Very scary experience. The care in here was amazing, so was critical care I'm told, I could not get comfortable and there was a gentleman who spent ages with me trying to make me comfortable and reassure me.
After 6 days, I was moved into the worst ward ever. Ward 109. Here I would learn how disgusting the NHS has become, the lack of care and attention I received at times was upsetting and unacceptable. At times, I was left in my own poo if the stoma bag had leaked, I was left in pain for hours on end too. It was in here that the stoma nurses would start to teach me how to deal with living with a bag and how to empty/change them. I found this very difficult as I have not accepted that I have a stoma. I could not look at it or touch it, never mind empty and change it. After a few days I was told part of my discharge was to be able to empty and change the bag on my own and with wanting to desperately go home I realised I needed to sort my head out. The stoma nurses were very patient and understanding so after a few days I decided to try and empty it myself - this was partly because it was about to burst and the nurses were ignoring my call bell! I found emptying it straight into the toilet much easier than trying to empty it into a bowl like the nurses did. This made me realise I can start to empty it myself. It just left having to learn to change it. With this means cleaning the stoma etc which would mean looking at the wound and stoma which I still wasn't ready for. I cannot begin to explain how psychologically damaging this has been and still is. I'm 24 and living with an albeit temporary stoma. Another couple of days went by and I started to change it myself with help of the stoma nurse. They agreed that I was capable of doing this alone so it was just a matter of climbing the stairs with the physios and getting better to be discharged. I still did not feel confident with changing the bag but my mum had been in and had lessons so I thought she can do it as she found it easy! I soon was walking the stairs despite great pain and weakness. 

I went into hospital weighing 10 stone 10, I left weighing 8 stone 6. This is largely due to the operation but also the fact the hospital food was inedible. Mum commented when she saw it and said she wouldn't even have fed it to her dog - she doesn't even have a dog! 

So long story over, I'm now home. Slowly getting there. Good days and bad days, (worst day so far today!). There is a long road of recovery ahead of me but I am determined to get better, near death experiences make you realise what you have. I need to get better to continue my teaching career and make a difference to kids lives. 

I'm hoping to get some psychological help soon to help me with this horrible situation. My girlfriend, mum and family have been fantastic. Just waiting for the 4th February where I go back to see the surgeon and hopefully I will get a date or at least an idea of when the reversal will take place.

15 Aug 2015

15/8/15

Feeling a bit shit so not got round to posting.

I noticed when sending pictures over to Mr Christopher that the graft was looking different. It had become very bloody and was oozing. He asked to see me as soon as possible, I had a feeling it wasn't going to be good news as he hadn't asked to see me any earlier last year when the incision area had opened up. He also said in the mean time to go onto more antibiotics. I asked the district nurse do a swab test for infection anyway just to see and it came back that there was an infection. The doctor rang me directly and put me on another antibiotic which meant I'd be on 4 a day, 2 of each. I rang the London clinic to get an appointment and the nearest one was Wednesday 12th August. Soph drove me down as obviously I still can't drive. He came to the conclusion that the operation hadn't been successful and that he would remove the skin when I have my next operation. He doesn't want to remove it before hand as he wants to do more during the time I'm asleep other than just remove the skin. Which leaves me feeling shit that all of this has been for nothing! Only thing to come out of it is the glans sculpting! He asked me a few more times if I am definitely sure about not wanting to use my arm as it now means I wont be able to stand and pee. I still stand by my decision, I don't want the visible scarring.
The plan is now to have surgery just before Christmas and this will consist of having the skin removed and the vaginectomy. I'm unsure about booking in for Christmas though as I need to be able to drive at the very beginning of January so if this isn't going to be possible I'm going have to wait yet another year to be able to have enough time to recover. However, it does now only leave 2 more operations until completion. After the vaginectomy operation it will just be the prosthesis to do.

There is a light at the end of the tunnel after all. The tunnel is just very long!

I have also started my application for my birth certificate, bit annoying trying to find documents from 2011 though!

29 Jul 2015

29/7/15

Been back at home 8 days now making it 9 days post op. Feeling slightly more mobile today which would have been encouraged by the catheter being removed yesterday. That should have been removed 1 week post op but the district nurses only take them out in the mornings and there was an emergency which meant they couldn't get to me.
I was admitted into St John and St Elizabeth and I had glans sculpting and I had the labia skin removed to make what will be an extension of my urethra.
I was first in theatre which was good as it gave me slightly longer to recover before leaving the day after.
I was in lots of pain when I came around in recovery and had quite a lot of morphine before the pain eased. I was soon back in my room being asked to move from one bed to the other!!! I was quite glad to be awake and know that I was awake after what happened last time. So relief there.

I have spent the past week in bed as sitting, standing or any other position than lying down is very uncomfortable and painful, this is due to the bruising and soreness. I have swelled up that much I thought he may have inserted a testicle inplant!

A few days ago I was able to see what he had done, I do not like the look of it at all. I think originally I was under the impression all of the work would have been done inside the penis so I wouldn't be able to see much but that wasn't the case. So there is just a huge amount of thick skin from my urethra now to about half way up my penis. I know that this will not always be there but it is hard to deal with at the moment. I struggle with being restricted so also feeling down about that doesn't help. The thought of this not being the last also doesn't make things any better!
I have an appointment for the first Monday of October half term to go back to London and see if I can be booked in for Christmas time to have it made into a tube. Until then, weekly photos to Mr C.

14 Jul 2015

14/7/15

Bit late with this update but never mind.

I have been back to see Mr Christopher and Mr Ralph in hope to be given the go ahead with using the labia to make a urethra, luckily it should be possibly so this is going to be tried.

I am being admitted to St John's and St Elizabeth's at 6pm on Sunday 19th July and having the surgery on the 20th. Hopefully all will be smooth this time!


11 Mar 2015

11/3/15

A lot has been going on lately, should have updated this but I haven't really had the chance.
I have started back work at Alton Towers and I have also started volunteering in a school where I will be working in September for my teacher training year. All this along side third year uni studies.

I finally had the hair removal funding approved for the hair to be removed from my forearm ready for radial artery urethroplasty - this would enable urethra lengthening so I could stand to pee. I originally opted for pubic phalloplasty due to scarring on my arm so it never really felt right to have this stage done due to the scarring. I obviously want to be able to stand and wee but I couldn't accept the scarring it would leave. I came to a decision to not have this done. I contacted the London team to update them and was requested to see one of the surgeons. 
This appointment happened on Monday 9th March. Me and Soph drove down to London and went to Highgate hospital to see Mr Ralph. During this appointment we discussed what would happen instead at stage 2 and that it would be the sculpting, testicular prosthesis, the reservoir inplanted and burying of the clit. This would be taking place around mid July once the schools break up for summer. Mr Ralph informed me of an old method that they used to enable people to stand and wee and at the time I was not interested. However, after only 2 days thought I think I am going to change my mind once again! He told me that they can use the hairless skin that is already available from the genital area and use this to extend my waterworks. The only problem is that it would not be all the way to the tip of the penis... This is what originally put me off and the fact that he also said that it is hard to control the stream! 
As I say, I think after all I will opt for this and then at least I have the option if I want to and if it is controllable. At least there will be no scarring and less complications than I was originally facing. 

I will probably contact them tomorrow and hope that they don't want me to have another appointment to discuss this as it is a long way to go and as I have just booked a holiday to the Cape Verde Islands I am skint! 

4 Dec 2014

4/12/14

Yesterday I finally had my consultation at a hair removal clinic. Didn't think it would hurt as much as it does!
Told me to keep my arm covered whilst I'm on holiday in January as a tan can stop the laser picking up the hair or something. Not looking forward to that as will look a dick.

But at long last I think it is sorted. Another brick wall defeated.

4 Oct 2014

2/10/14

Been back at work for quite a few weeks now, and also started back Uni last Tuesday. Can't believe I have started my third year.

After a long journey recovering, I wanted to upload some pictures that my mum took whilst I was at my worst. It is amazing how far I have come in a matter of months health wise.
























11 Jul 2014

11/7/14

I thought as time went on I'm supposed to get better? So much for 'time is a healer' bullshit.

On the verge of tears yet again.
The district nurse has just been to change my dressings, which is being done daily. I told her what had been said in London yesterday, (that everything is looking fine and not to be concerned. My problems are quite common with pubic phalloplasty.) she agreed that everything is looking under control. However, the left hand side has now started to open, in the way that the right side started, and also the middle of the incision is still very yellow. The wound at the top of the penis was left uncovered yesterday but has been redressed today. There is also still yellow stuff in the right hand side hole.
Either Monday or Tuesday, they were swabbed again to check for infection and the nurse has just rang for the results and they have come back positive. Everyone has said it doesn't look infected and that infection rate is very low at this point. So yet again, another step back! Just happens that there was two during one day - the infection and the opening of the left hand side.

:( I just want to get better!!!!!!

6 Jul 2014

6/7/14

No regrets but so depressed right now. I can't cope with being as I am. Constant pain that pain killers just aren't touching, inability to walk further than 10 steps at 0.01mph and being restless and agitated. I'm meant to be resting but I can't sit still because I am constantly uncomfortable. I can't sleep because the pain is that much it keeps me awake. The main source of pain is in my feet which is weird, feels like a constant stabbing pain, mixed with pins and needles which when the shooting pains start, sends my entire leg into spasm. It hurts to even put my socks on.
Feel sorry for mum and Soph as all I'm moaning about is my feet. I have spoken to my GP about it and he thinks the compression socks have severed a nerve. I did have them on for about 8 days and when I was in the high dependency unit I swelled up with fluid so maybe during that time they were way too small for me. Who knows, all I know is I'm suffering from it now!

After the trip to a&e I've had to have the dressings changed daily, they have been full of fluid every morning and I've even had to change them myself during the night due to them leaking. The district nurse has started to come back in now for 'wound care'. She has today decided to pack the hole which she measured to be 2cm x 1.5cm big, which will hopefully dry the wound out so it can start to heal.

Got yet another appointment at the doctors tomorrow at 5.30pm for my stitches to be taken out. Not looking forward to that as I've never had stitches removed before and some are buried under scabs. On a lighter note though, I should be able to have a shower after they have been taken out!!!! Not had one since the 16th June so you can understand why I am excited about that.
I also have an appointment in London back at the Harley street clinic on Thursday at 1.30pm for a post op review but also because of this wound. Hoping they won't admit me back into hospital, but I can't see why they should. It's not infected and is under control with being dressed daily.

Had a nice weekend as not been alone, Soph took me to Manchester where we hired a wheelchair so I could enjoy the day, was a nice change of scenery. However, tomorrow is Monday which means I spend the day by myself again :( don't cope too well being stuck inside all of the time, can't wait to be able to drive again at the least.


Trying to stay positive, (even though it probably doesn't seem that way) it is just difficult when I feel this hole in my side has given me another step back in recovering.

Sorry if you're squeamish but I have uploaded a picture of the hole so you can see.