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.
Thursday, 27 December 2018
Friday, 12 May 2017
(119) Nothing ever runs smoothly!
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.
Really feel it for him now, his health has suffered since he began the surgery.
Tuesday, 20 December 2016
(118) 5 year anniversary...
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
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
Thursday, 1 September 2016
(117) Overdue update!
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.
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.
Sunday, 22 May 2016
(116) Not the outcome we expected...
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.
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.
Saturday, 2 April 2016
(115) Yay, it's happening!
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
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
Wednesday, 16 March 2016
(114) Light at the end of the tunnel
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.
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.
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