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!
Sunday, 14 February 2016
Friday, 15 January 2016
(111) Update
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.
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.
Wednesday, 23 December 2015
(110) Home for Christmas...
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
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
Tuesday, 1 December 2015
(109) Major blip...
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!
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!
Sunday, 15 November 2015
(108) GRC
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.
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.
Sunday, 13 September 2015
(107) Update
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.
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.
Tuesday, 4 August 2015
(106) Another set back!
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!
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!
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