Diary of a mum's journey...

Good news!!

2018-12-27T17:33:00.000+00:00

Hello everyone, not posted for a very long time. Not had anything worth posting until now...
W has had a successful reversal of his ileostomy, Mr Titu at The Wirral has done it.
During his recovery he gave himself something positive to focus on...
We have a wedding in April, so happy for him and S.

W has also talked about having the rest of his surgery now so he will be complete.

So, after a difficult three years of poor health everything is absolutely brilliant.

Happy New Year to you all.

(119) Nothing ever runs smoothly!

2017-05-12T23:19:00.003+01:00

Why, why, why do things never go smoothly for my son, I feel so worn out?? After he had an anaphylactic shock from his last Nebido shot, the Dr asked him to go and see him. Off he went on Tuesday evening to be told they could no longer give him the injection due to the reaction. He is now waiting an appointment with the immunologist for tests, hope they hurry up he is due a shot in 8 weeks. Not sure what they will prescribe, Nebido is great as its done every 12 weeks, others we have researched are fortnightly or they are gels.

Really feel it for him now, his health has suffered since he began the surgery.

(118) 5 year anniversary...

2016-12-20T20:32:00.000+00:00

W just asked me if I remembered what we were doing this day 5 years ago!
After a couple of minutes trying to think, I gave up.

So, 5 years today it was W's first testosterone injection.
To me it feels like I've always had W.

So happy 5th birthday WZxx

Merry Christmas to you all and best wishes for a very happy new year xx

(117) Overdue update!

2016-09-01T10:51:00.001+01:00

I decided not to post during the last few months as there wasn't really much to say as W was just getting on with things.

But, looking back since the operation in April, W has come a long way. W has completed his teacher training, which was definitely hit and miss due to the amount of time he had to have off. On the plus side to this, this has been recognised and he received a lovely email from the head of the university who praised him for his determination etc, he will receive an award at his graduation for 'Tenacity and Resilience', I am so proud, I really don't know where he gets his strength from!

W had two holidays booked over the summer, again he was very concerned has to how he would cope. One of these was with me, he agreed to travel to Mauritius with me as it has been a life long ambition of mine. This was booked over 12 months ago, W did wonder at one point if we should postpone as he didn't want to spoil it for me. W emailed the hotels and explained his medical need, we were given extra bedding and bath towels. On the flights he was given a seat close to the toilets. Dietary wise, W managed very well but had to avoid lots of 'different foods' as he didn't want to be ill. We had afternoon tea in the Burj Al Arab, W had discussed his dietary needs and they couldn't have been more accommodating, superb, recommended if you ever have the chance!!
Holiday update- it was fantastic. We stopped in Dubai for 3 nights o the way and explored. W coped very well. In Mauritius he sunbathed without his t shirt on, people really didn't care that he had a stoma bag. One lady came and spoke to him and praised him for his attitude, she had a Dr son who had a stoma and would never remove his top!
Currently he is in the Dominican Republic with S they are having a ball, S is such a rock for him.
Best news ever they have got engaged there.

So a very happy mummy, and it's lovely to post such a positive update.
Take care everybody and follow your dreams, it does turn out well in the end.

(116) Not the outcome we expected...

2016-05-22T21:07:00.000+01:00

W went for surgery on Sunday24th April. Everything went well, surgeon happy with the procedure. On the Tuesday, W text me early in the morning to say he had passed wind...Brilliant, never thought I would be celebrating my son having wind!!
On the Wednesday W had to have a small procedure as there was a hematoma in the original stoma opening, I managed to finish work immediately to be with him as he was still not confident that everything was going to be successful. Everything was good.
On the Thursday W's stomach was quite enlarged and he was experiencing a lot of pain, on the Friday the surgeon was becoming concerned, he had not had a bowel movement and his stomach was very enlarged. The surgeon who was fabulous, decided to send him for a CT scan, this came back but didn't show anything up in particular, join was good, surgeon says the swelling is due to the incisions. On the Saturday the surgeon made the decision to open W up as his stomach was still swollen and bruising had appeared at the tops of his legs, also he was suffering a tremendous lot of pain.
W had to sign the consent and we had the discussion with the surgeon that he may have to put the stoma back.
W went in to surgery at 4pm. At 8.30pm the surgeon broke the worst news to me. W was in a mess, adhesions had attached themselves around the bowel and intestine, the join had come apart. Due to the amount of surgery he had had, W had to stay in intensive care for 24 hours then he was having further surgery to put in the stoma. The following day I was unable to see him. On the Monday I got there early and met with the surgeon. Due to W's bowel being in a mess he had had to remove more of the small and large intestine, the stoma would not fit in one hole, he had to make two incisions so W would have two stoma bags. W was unaware. he surgeon broke the news to W.

24 days later I have W back home. It has been a very difficult time, very tiring I have done 2000 miles driving back and forth to the hospital.
On the plus side W is very well due to the care at this hospital being superb. He is putting weight on and the stoma output is excellent, we have learnt so much.
Only down side is W's emotional state, he has had a couple of breakdowns. Work have been great with him and he can't wait to get back.
Money side of things, again the hospital have been very helpful, the bill has been reduced greatly, the surgeon will not be billing W, the ward sister has negotiated a reduced fee for the room cost and he had no food whilst he was on the private route! The surgeon transferred him on to the NHS after 5 days which was agreed at the consultation.

W is now questioning why did he decide to have the hysterectomy in the first place? Would he have been happy if he had stayed as who he was? Is he happier now but with a stoma?
My answer is, he's a happy, confident, lovely young man, with a very rosy future and I wouldn't want him any different; this is only another little blip in his quest to carry on with the life that he is mapping out for himself.

(115) Yay, it's happening!

2016-04-02T18:40:00.000+01:00

A very positive appointment with the surgeon, he is more than happy to take W on for this reversal.
We had a very in-depth conversation about the procedure, true to W's form it is complicated.
Usually a reversal is done by stitching the two ends together through the stoma opening, in W's case he has to have an incision through his stomach as there is not much bowel to play with. The surgeon knows best, so we'll trust him to know what he is doing.

The cost of this is ridiculous but how do you put a price on your health and happiness? The total cost is £7,300. After agreeing that W could be at the hospital by 7am on the 24th, he does not need the overnight stay the night before, that has saved us £400, so £6,900 sounds better...We have arranged to borrow this off a very close friend and it was agreed that W could begin repayments after his holiday. (This holiday was paid for before all of this happened, he would lose a lot now if he cancelled).

The donation page which S set up has been a success, so far we have raised just under £1000. We are overwhelmed by the generosity of family and friends.

Operation booked for 24th April. W not getting excited at the moment, he is wondering how he will cope if he wakes up and the ileostomy reversal was unsuccessful!!
He is also feeling guilty about borrowing such a lot of money and receiving donations when he has a holiday planned. He will appreciate the holiday as he needs a positive focus. Just hoping now that having a couple of weeks off work will not cause any issues with his training year, health v work, health every time!

If you would like to make a small donation, this is the link to the go fund me page -
https://www.gofundme.com/2hujumqk

(114) Light at the end of the tunnel

2016-03-16T21:42:00.001+00:00

I did some research on the good old Internet and found a surgeon who was happy to take on W's reversal privately.
We had an appointment earlier this evening to discuss. Mr Titu, he is based at Murrayfield private hospital at the Wirral, this is the Spire group. Lovely gentleman, he gave W a thorough examination and had received lots of notes off Mr Farmer so he had a good insight to everything. What was even better, he never once mentioned W's reassignment surgery.

We are just waiting on a price, due to the complexity of this operation it will cost more due to the intense after care after the operation. If all goes to plan with the price, he is booked in on the 23rd April. Hopefully a light at the end of this never ending tunnel.

W's girlfriend has set up a go fund me account. I have put the link below, any donation would be greatly appreciated.

(113) Another unhappy update!

2016-03-06T17:12:00.001+00:00

I really wish I could write something more positive, this situation is getting me down now, W is beside himself.
We looked into the private route, the surgeon who did the op does do private too, fab! Not!

After a long phone call with his secretary she called back with a price and said she would put him forward, she did explain that there would be a chance he would not do it privately.
Two weeks later, W received a call to be told the devastating news that he would not do it as it was to complex! Not sure what he meant by that as W was dumbfounded and couldn't ask any questions.
W has since rang the secretary to get this op done as soon as possible, now we're told it is looking more like 18 months, can it get any worse.
We fully appreciate that all of the cancer patients are priority but it's looking like this op will never, ever take place.
In the mean time, W has now returned to work full time, he has had his timetable increased and has to do three assignments by the middle of March. He is also struggling to eat and drink due to the embarrassing noises it makes and the constant emptying of it, he will never put his weight back on living like this. This is putting a big strain on his relationship as he is always working and is too tired to do anything due to him getting up 5 times in the night to sort the bag.
I have not seen W so low for a long time, he is very emotional and angry and so over tired.

We both have an appointment with our GP this week, I am hoping he will do something as I am not coping very well at the moment, I am exhausted and concerned for W's mental health as he has said he has suicidal thoughts. W has been asked by the secretary to get a letter off his GP stating his mental health state to help to move him up this mile long list, it will cost, but who cares!

We have discussed the holiday which we have booked for August, realistically we may have to postpone it, I suppose that is the least of our worries.

(112) Not happy...

2016-02-14T18:09:00.000+00:00

We had the appointment with the bowel surgeon a week last Thursday. After a few mmm's and arh's and advising W it would be close to 6 months from the op before they would reverse the Ileostomy, they agreed to put W on to the emergency waiting list. Brilliant, a light at the end of this tunnel we have found ourselves in!

W had to call the surgeons secretary 2 weeks later, he called a week later. Gutted, the waiting list is at least 6 months long from now, W was so upset when he called me at work. This means the fantastic holiday he has booked will be ruined, all of these years of living in the wrong body and now this to stop him from living life, I feel so sorry for him.
W's mood just got darker, he is feeling quite aggressive anyway and I am fed up of him biting my head off.
The Dr had already suggested that he could increase his citalopram, he has decided against it as he was so close to been off it completely just before this emergency, this would be another set back.
I suggested that he called his stoma nurse as surely he is classed as an emergency as he is feeling very depressed and that concerns me. W called the secretary again and expressed how this was affecting his whole life, his job and training are been affected, he is unable to go out for long periods of time, the constant alarm setting throughout the night and then he has to get up early to go to work and do the agreed 2 hour phased return to work he is absolutely shattered; this should have been increased after half term but W is still not eating whilst out, as he finds it very embarrassing due to the noises it makes and the constant filling up after, it's a long day with no food and drink.
W was referred to a counsellor, but like everything else there's a pathetic long waiting list and no dietician insight!

We are discussing whether or not to go down the private route, not sure how we would pay or even any idea to a cost.
There may be a fund raising plan on the horizon!

(111) Update

2016-01-15T18:05:00.000+00:00

We got through Christmas don't know how but it happened!!
W was still quite unwell but at least he was home.

We were concerned about his teacher training as he was contracted for two years and the first year would now overlap the second. The school were fantastic, very supportive and told him to return when he felt ready, hopefully he was aiming for the first week back after the New Year.
Unfortunately W was still not physically well enough, the district nurse was still coming out daily as he still had quite an open wound so he was unable to return.
The school had a meeting with the school's direct coordinator to discuss his return and deadlines. W had to make the decision to return as they were going to restart his contract in September!
The Dr was not happy but obviously couldn't stop him from returning, the Dr did put restrictions on his return to work note.
W started back last Monday on a phased return, once again the school have been very supportive and given him lots of flexibility, taking in to account what the Dr has advised. So far so good, this is good for his mental health too, as he is not moping around the house!
W is just doing a couple of hours in the morning, then he is working at home, this fits around the nurse calling in to do his dressings.

Good news- W now has his birth certificate.

(110) Home for Christmas...

2015-12-23T22:50:00.003+00:00

After a traumatic 6 weeks W has finally being discharged from hospital.

W was originally discharged on Monday 7th December, I felt that he was not well enough but I supported him like a mum would. I arranged time off work and so did S his girlfriend, he was in a terrible mess, pain and emotionally. The pain was becoming worse in his back and I was having to pad him with pillows so he could have some sleep. On the Saturday he was passing out with the pain and his breathing had become very shallow, early evening his temperature was through the roof and he was trembling, his eyes were wide open and he appeared very scared. I rang the hospital and I drove him straight there. An X ray was taken and he had a litre and a half of fluid on his lung causing it to collapse. He was put on a drip and on strong painkillers. The next day he was taken to have a drain put into the lung. After 12 days he was allowed home, so far so good. There is still a collection of fluid on the lung, he will have to have regular X rays until it has cleared.
Just need to fatten him up now as he has lost nearly 3 stone!

The actual gender reassignment is a breeze compared to the secondary effects he has of surgery, poor kid he has it tough, now to get over the next 6 months and he can have the stoma reversed.

Merry Christmas to you all and a very happy 2016 xx

(109) Major blip...

2015-12-01T21:30:00.000+00:00

Can't believe what has happened!
Couple of weeks ago W was up in the night vomiting. 30 odd hours later after continuous vomiting and excruciating stomach pains he was admitted to hospital.
After lots of prodding off various nurses and doctors, he was given a morphine drip to enable him to lie down so he could have a CT scan. A couple of hours later, devastating news, W had a blockage in the bowel and seepage, they were uncertain to what extent until they opened him up.

Emergency surgery in the night. They had to remove 6cm of his bowel and put a stoma in!!
The bowel had attached itself to the scarring of the hysterectomy and twisted, the bowel had been starved of oxygen and died therefore creating the blockage and had to be removed. The stoma is temporary, but W is devastated, I think he has been through every emotion possible.
6 days in critical care, 5 days in special care, W was moved on to a normal ward last night, he's the youngest one there. Can't wait for him to come home.

Another set back to the planned operation just before Christmas, so close yet so far to reaching the end of his surgery!

(108) GRC

2015-11-15T21:22:00.000+00:00

W has applied for his Gender Recognition Certificate.

After lots of paperwork evidence collecting from over the past few years he sent it all off. The court hearing is this Wednesday 18th November.

My feelings are very bizarre at the moment, it's great news and I am happy that finally all legal documentation is completed; on the other hand I feel that the birth of my daughter has been wiped away and I am feeling quite emotional. I think a good cry and then everything will be absolutely fine again.

(107) Update

2015-09-13T21:47:00.000+01:00

Unfortunately the on-lay labral urethroplasty operation was not a success but W was told what the chances of that route were.
The graft has died and this will be removed at the next operation which should now take place during the Christmas break. Mr Christopher did not want to administer more anaesthetic just to remove the dead graft. The next operation will be a vaginectomy, and testicular implant a small urethral funnel will be created where he can pass urine at the bottom of the scrotum.
This will involve being catheterised for 2-3 weeks.
After that one there will be the final operation during the Easter break, we can see the light at the end of that very long tunnel!!

W has now started his teacher training post at a very good secondary school, it is so good to see him settled and starting a career. The application for his gender recognition certificate has now been sent off too, so all looking good.

(106) Another set back!

2015-08-04T22:46:00.000+01:00

W had the catheter removed a week ago and has been recovering very well since. The last couple of days the swelling has subsided making it a little more possible to move about, there is still some bleeding from the wound.
However, W has had to send Mr Christopher a weekly picture of the overlay, today's response was not good, the on-lay has not been successful and the skin has died.
W has been given an appointment to go to the Slough clinic to meet with Mr Christopher next Wednesday, typical I am on my holiday and will be out of the country!
As this has not been viable a urethral funnel will be the next option which was discussed at the last appointment, not sure when this will now take place.

I now need a little rant!
Do the district nurses not discuss with each other particular patients, especially these unique cases, or check what the medical need is of their patients before actually knocking on the door?
The nurse came out today, may I add a really lovely nurse... First of all she thought that this patient was an elderly man, secondly she thought she had come to treat an in-growing hair in the groin.
W and I just looked at each other and had to then explain the whole gender re-assignment path. The dressing has been sorted but the nurse was concerned that W would not be able to pee if she covered the end of the penis!! Thank goodness we have a sense of humour!

(105) Operation 2 done!

2015-07-22T22:42:00.000+01:00

Off we went to London on Sunday (19/7). I booked the Cumberland, Best Western in Harrow, 10 minutes from Stanmore tube station.
We got to St Johns & St Elizabeth's at 6.45pm and W was admitted, it was deja vu as he was booked into exactly the same room as last time.
Admissions paperwork done and they said he would be going at about 3pm for surgery on the Monday.

I arrived on the Monday very early so I could get a decent parking space at Stanmore. Mr Christopher came to see him at 9am and at 9.30am he was taken into surgery, was told it would be about 3-4hours in surgery.
At 1.30pm W was back in his room. W was very much awake and quite with it, which was a blessing after last year.
W was in quite a bit of pain, having a catheter in didn't help, the morphine shots helped.

The next day I arrived early, Mr Christopher came to see him about 9am. The catheter will be removed in 7 days by the district nurse and W has to send pictures to Mr Christopher each week so he can check on the healing, he then has to have an appointment in London in 2 months time. All was good and he could go home. The nurses sorted him and eventually we had the discharge paperwork and medication. All I had to do now was to get him home. The tube wasn't too bad as he could stand, the car was a different matter, don't know how we did it but we did!!
Now for me to sort the catheter... I was given no instructions how to put on the bigger bag at bedtime, a few shouts off W I gave up as I was causing him great pain, a phone call to Codey, (W's friend who is a couple of stages in front of W) and dah dah all sorted!

Today (Wednesday 22nd). Will in pain but managing it with the various painkillers. The catheter is causing the most grief. Will is unable to sit so he's going to be lying on his bed until it has been removed, lying on the sofa hurts as the sofa is harder than his bed and the skin graft on his side causes pain...
3 more to go!!

(104) Proud mummy moment!

2015-07-14T21:03:00.000+01:00

Thought I would share a couple of W's graduation pics! I am so proud to see how far he has come and to battle on through the last few years with a degree at the end..

PICTURES REMOVED AS W IS STEALTH.

(103) Next operation...

2015-07-07T21:53:00.000+01:00

W met with Mr Ralph on the 9th March in Harley St, London, an alternative to the skin graft was discussed. This meant 4 smaller operations instead of the 3 which he had left to have. After some thought W agreed that he would chose that route. All that we needed now was an appointment date to suit, we have the graduation on 9th July and I finish for the Summer break on the 17th July, ideally the following week would allow plenty of healing time ready for when W starts his new job in September, plus I will be off to look after him too!

After numerous phone calls W was unable to secure a date due to the diary not being 3 months ahead. Eventually W was able to book it but was told he would have to have another consultation first... W went off to London a couple of weeks ago and met with Mr Ralph and later in the day had to meet with Mr Christopher.
The new route was discussed but still no appointment, a few phone calls and emails over the following week we eventually had the date we wanted, July 20th at St John and St Elizabeth hospital.

The sequence of surgery is-

On-lay labral urethroplasty and glans sculpting, they will also bury the clitoris at this stage.
Partially tube the distal urethra.
Join up urethroplasty, vaginectomy and scrotoplasty, reservoir and testicular prosthesis.
Penile prosthesis.

If the urethra is not viable then a small urethral funnel will be created where he can pass urine at the bottom of the scrotum.

Fingers crossed everything goes to plan, just need to book my hotel now!!

(102) To pee or not to pee!!

2015-02-15T14:36:00.000+00:00

Slight change of plan now to the original process.

W has decided not to go ahead with the skin graft and urethra operation.
From day one W was not happy with how the graft was taken from the forearm and the level of scarring this would leave, scarring on his torso and abdomen he can hide but the one on his arm would be on show and open to questioning!

After he chatted to me about it the other day and asking for my opinion, we did think it's a big op just so he can pee in a urinal, there are many men pee shy so to be honest why bother. Who knows in a few years somebody may have designed something to prevent such a major operation.

W has an appointment in London on the 9th March to discuss the next operation and what it will entail, hopefully that can happen just after he graduates in July.

(101) How time flies!

2014-12-20T18:17:00.002+00:00

W has just informed me that three years ago we were in London...It was his first testosterone injection.
Can't believe three years have gone by since that day.
I have just looked back at my blog entries, wow, how far have we come!!

Hope you all have a lovely Christmas and a great 2015.

(100) Hair removal appointment

2014-12-06T11:59:00.000+00:00

W had his first consultation at the designated NHS funded hair removal clinic, he chose to go to Altrincham as that was the closest to home.

W has now had the skin test for two types of laser as that's what he feels more comfortable with, he thought electrolysis would be more painful and time consuming!
The whole process will take at least 8 months as he can have one session per month. It was quite painful so he's not looking forward to this at all...Another long road and it is now going to run into his teaching practice year, thank goodness for the regular holidays he will have!!

He is off to Mexico in the new year so the last bit of sun on his arm for a while.

Happy Christmas to you all and all the best for the New Year x

(99)... Hair removal

2014-11-19T22:02:00.000+00:00

Long awaited answer arrived in the post today!

After W had yet another appointment with the family Dr to sort the hair removal, the Dr contacted the NHS trust.
We now have a list of hair removal therapists to choose from. Decision is does he have hair laser removal or electrolysis?
Just need to choose the closest one and sort an appointment now and get it started asap so the next op can be done.

(98) Hair removal, who does it?

2014-09-19T22:18:00.003+01:00

W has settled back into work and is getting ready for University next week. Occupational health suggested he did alternate days but instead he has being doing a straight 3-4 day week. W is also coping well with his Citalopram, the Dr has now reduced the mg dose and he takes it every 24/48hrs depending on how he is feeling.

We have asked for the next operation to be booked for the middle of December but until the hair removal has been done we are at a stand still. Why is nothing straightforward, we have spoken to the family Dr, the surgeon and Charing Cross but no joy, we are been sent from pillar to post.
I emailed a private clinic at the beginning of the week to see if they could advise us, but they have never had referrals from the NHS, and if Will went there they do one session a month and it would take 12 months to complete!!
The latest advice which was from our Dr today was for W to write to the Funding Request Panel. We did expect this to be part of the operation process and to be straightforward, I hope it doesn't set everything back too much, we need everything very much complete by Sept 15!

(97) 72 days post op...

2014-08-26T22:59:00.001+01:00

Today W has been discharged, the district nurse came and signed him off. Hopefully he may go back to work on Monday, he does have 2 more weeks on his sick note but I'm sure the Dr will sign him off.

After been away for three weeks I noticed a massive improvement on my return, was lovely to see after all of the worry he has given me!
The wounds have nearly healed over just a couple of areas to go but no dressings now.

Hopefully he will be able to sort his next operation now he has recovered.

(96) 40 days post op...

2014-07-26T20:35:00.000+01:00

40 days on, infection has now gone after a strong course of antibiotics. Wounds are still quite red and angry looking, the internal stitches are still protruding, they may be removed this week as Mr Christopher did suggest to give them a couple of weeks, the nurse is coming in every other day. A different nurse came in on Monday and did a swab as she was concerned about one of the wounds, luckily no infection!
W is still unable to drive, hopefully this week we will see a big improvement and get some independence back. Mobility wise that is improving now although he is on stronger prescription painkillers for the pain in his feet.

Laura the district nurse who has been with W 90% of the time since he came out of hospital, has now gone onto maternity leave, it's a shame that she will not see W progress, hopefully she will be back when he has his next op, she had built a fabulous, positive relationship with W, sharing a joke and putting up with W's flirty manner. It was also her first phalloplasty patient as it was with the others who have done his dressings.

On a more humorous note, the best quote off the nurses as they see the result of the phalloplasty is 'wow, that's amazing'. It puts a smile on W's face, not many men can say they get that reaction!!
W is in daily contact with Codey, a brilliant supportive friendship even though they are a couple of hundred miles apart.