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Closing Review to comments
Hey All,This is the RealSelf Admin Team. As you all now know, Allie tragically passed away a short while after her surgery. It's now been a couple of months since her husband did a final update and people have had a chance to leave their condolences. We now feel this is an appropriate and respectful time to close the review to future comments. Allie's review will still be accessible to read, but will no longer be able to be commented on.We leave you with some of the happiest photos Allie shared with us. She was so full of life and love and that is how we will all remember her!The RealSelf Team
Devastating and tragic news
Hi, I am Alison's husband,my name is Malc and I'm afraid I have some tragic news regarding my beautiful wife. On December 4th 2014 Alison passed away, bronchial pneumonia was the ultimate cause, but she had suffered greatly with infections,malnutrition and acute and chronic weakness brought about by complications from the gastric surgery.
Just after her last update she was rushed into hospital suffering with extremely low potassium levels and malnutrition. Her sleeve had healed like an hour glass and was restricting all food intake - the problem was corrected but the real damage had already been done. The low potassium had caused something called peripheral neuropathy, basically her peripheral nervous system had suffered irreparable damage, the pathways between muscles,nerves and the brain had been destroyed. This resulted in numbness,pain and paralysis of her arms and legs - as you are aware, Alison was disabled so we were capable of dealing with the reduced mobility but the problems just got worse, she became too weak to feed or take water herself, she lost all dexterity and was incapable of even simple tasks such as using her iPad, this was a devastating blow to her morale. She suffered a major water infection,which totally changed her personality, she had no idea who I was, became very confused and began hallucinating. It took us weeks to get it under control,despite receiving outstanding treatment at home. I tried to convince her to return to hospital but she was adamant that she would not. Malnutrition became a real problem, Alison could not get enough nourishment, we tried everything - high calorie shakes, homemade protein sorbets and soups,even Parenteral feeding. Eventually things started to improve, Alison began to eat more normally - 4oz,4 times a day and we began physio to try and repair some damage, but she suffered a bowel infection soon after which was almost impossible to treat. She had zero bowel control, was incontinent 100% of the time and needing cleaning and pad changes every two hours. Eventually this took it's toll on her skin which began to burn and break down, Alison's disability has always made her a high risk of skin damage and pressure sores but since being under my care we have followed a regime that meant she never once suffered with any skin problems , something we were both very proud of. The last two weeks of her life were the worst, I don't think I slept once during that time,she could not fight off the bowel infection and she was lost to me by that point - she was unresponsive and spent all her time sleeping. Due to her lack of mobility she eventually contracted a chest infection, this was my worst nightmare - I knew that this was the big nasty, but even though things looked bad I never stopped fighting for her - I did everything humanly possible for her, kept her clean and dry,administered IV drugs and spent time comforting and pampering her. I washed her hair,gave her a manicure and pedicure,read to her and cuddled her.
On the morning of the 4th, I was going through my normal routine with her when she finally gave up. She stopped breathing. I immediately began CPR and called the emergency services, who were with us in minutes - they were outstanding,absolutely incredible and got a heart beat, they got her to hospital where she suffered another 2 heart failures before the emergency team stabilised her. I went in to see her, she was unconscious and in a bad way - I was asked if I wanted her resuscitating should her heart fail again - I have been asked this question on more than one occasion in the past - but before I could answer she made the decision for me and slipped away. I have never felt such despair and pain, my whole life had been built around loving Alison,keeping her safe and providing the life she so richly deserved. She was the only thing I needed in life, she was the battery that made me work and now she was gone.....I had no idea how to process that.
Alison gave me many things in life, the two most important things she gave,after love and memories, were inner strength and good friends. My family and friends have been monumental in their efforts to help, but my own strength is what has kept me functioning. I dealt with all the official stuff quickly, planned the funeral and even conducted the funeral service myself, it was something I felt very strongly about - why should I put words in a strangers mouth when I am the one most qualified to talk about Alison. I pulled it off brilliantly, I made the service a reflection of Alison - bright,fun and creative. I told stories,shared funny memories, even had a singalong and got everyone clapping and dancing...Alison would have loved it.
I'm now rebuilding a new life, it miss Alison dreadfully - it's not getting easier to live without her but it is getting easier to accept my new reality. I know I can't wish her back, but I do know she is here within me. I don't follow any religion or have any kind of faith - I believe Alison had returned to the universe, she has become part of nature and in doing so is in everything I touch and see, that thought brings me enormous comfort. I still cry everyday but I can feel her around me ,offering me comfort and support.
My final thought is this - I was totally against Alison having the surgery but she was happy and excited at the prospect of a new life - I knew that if I loved her there was no way I could take that potential away from her, so fully supported her decision. Do I think it was the wrong thing to do ....Hell yeah!!, but for anyone out there thinking of having this done I have this to say.....follow your heart, if it's truly what you want then good luck to you, but don't be afraid to question the experts,asked to meet with the surgeon,interview him,let him know you are not just another name on a list. Confront the dieticians, in my experience they are arrogant,patronising people and all the information they give you can be found in a book or on forums such as these. If you are not happy let them know,ask for second opinions,be a nuisance and if you suffer any post op problems,no matter how insignificant , act immediately.
I want to thank everyone who helped Alison, she drew enormous confidence and hope from the advice given.
I wish you all well and hope you all find what you need and deserve.
Malc
.
Just after her last update she was rushed into hospital suffering with extremely low potassium levels and malnutrition. Her sleeve had healed like an hour glass and was restricting all food intake - the problem was corrected but the real damage had already been done. The low potassium had caused something called peripheral neuropathy, basically her peripheral nervous system had suffered irreparable damage, the pathways between muscles,nerves and the brain had been destroyed. This resulted in numbness,pain and paralysis of her arms and legs - as you are aware, Alison was disabled so we were capable of dealing with the reduced mobility but the problems just got worse, she became too weak to feed or take water herself, she lost all dexterity and was incapable of even simple tasks such as using her iPad, this was a devastating blow to her morale. She suffered a major water infection,which totally changed her personality, she had no idea who I was, became very confused and began hallucinating. It took us weeks to get it under control,despite receiving outstanding treatment at home. I tried to convince her to return to hospital but she was adamant that she would not. Malnutrition became a real problem, Alison could not get enough nourishment, we tried everything - high calorie shakes, homemade protein sorbets and soups,even Parenteral feeding. Eventually things started to improve, Alison began to eat more normally - 4oz,4 times a day and we began physio to try and repair some damage, but she suffered a bowel infection soon after which was almost impossible to treat. She had zero bowel control, was incontinent 100% of the time and needing cleaning and pad changes every two hours. Eventually this took it's toll on her skin which began to burn and break down, Alison's disability has always made her a high risk of skin damage and pressure sores but since being under my care we have followed a regime that meant she never once suffered with any skin problems , something we were both very proud of. The last two weeks of her life were the worst, I don't think I slept once during that time,she could not fight off the bowel infection and she was lost to me by that point - she was unresponsive and spent all her time sleeping. Due to her lack of mobility she eventually contracted a chest infection, this was my worst nightmare - I knew that this was the big nasty, but even though things looked bad I never stopped fighting for her - I did everything humanly possible for her, kept her clean and dry,administered IV drugs and spent time comforting and pampering her. I washed her hair,gave her a manicure and pedicure,read to her and cuddled her.
On the morning of the 4th, I was going through my normal routine with her when she finally gave up. She stopped breathing. I immediately began CPR and called the emergency services, who were with us in minutes - they were outstanding,absolutely incredible and got a heart beat, they got her to hospital where she suffered another 2 heart failures before the emergency team stabilised her. I went in to see her, she was unconscious and in a bad way - I was asked if I wanted her resuscitating should her heart fail again - I have been asked this question on more than one occasion in the past - but before I could answer she made the decision for me and slipped away. I have never felt such despair and pain, my whole life had been built around loving Alison,keeping her safe and providing the life she so richly deserved. She was the only thing I needed in life, she was the battery that made me work and now she was gone.....I had no idea how to process that.
Alison gave me many things in life, the two most important things she gave,after love and memories, were inner strength and good friends. My family and friends have been monumental in their efforts to help, but my own strength is what has kept me functioning. I dealt with all the official stuff quickly, planned the funeral and even conducted the funeral service myself, it was something I felt very strongly about - why should I put words in a strangers mouth when I am the one most qualified to talk about Alison. I pulled it off brilliantly, I made the service a reflection of Alison - bright,fun and creative. I told stories,shared funny memories, even had a singalong and got everyone clapping and dancing...Alison would have loved it.
I'm now rebuilding a new life, it miss Alison dreadfully - it's not getting easier to live without her but it is getting easier to accept my new reality. I know I can't wish her back, but I do know she is here within me. I don't follow any religion or have any kind of faith - I believe Alison had returned to the universe, she has become part of nature and in doing so is in everything I touch and see, that thought brings me enormous comfort. I still cry everyday but I can feel her around me ,offering me comfort and support.
My final thought is this - I was totally against Alison having the surgery but she was happy and excited at the prospect of a new life - I knew that if I loved her there was no way I could take that potential away from her, so fully supported her decision. Do I think it was the wrong thing to do ....Hell yeah!!, but for anyone out there thinking of having this done I have this to say.....follow your heart, if it's truly what you want then good luck to you, but don't be afraid to question the experts,asked to meet with the surgeon,interview him,let him know you are not just another name on a list. Confront the dieticians, in my experience they are arrogant,patronising people and all the information they give you can be found in a book or on forums such as these. If you are not happy let them know,ask for second opinions,be a nuisance and if you suffer any post op problems,no matter how insignificant , act immediately.
I want to thank everyone who helped Alison, she drew enormous confidence and hope from the advice given.
I wish you all well and hope you all find what you need and deserve.
Malc
.
From bad to worse.
Thank goodness I'm seeing my GP on Tuesday because I don't think I can carry on like this. I've got to the stage where the sight and smell of food makes me feel sick. I'm throwing up at least once a day, even water is hard to keep down. I'm so scared about my polymyositis, I haven't taken my meds properly for seven weeks. I feel very weak but that could be the starvation. I'm trying hard to get my 30g protein drink down, but solid foods, a teaspoon and I'm done. I'm still taking my vitamins, but apart from that I'm living on ice lollies, I'll have lost a lot if weight by August 11th, but at what cost. I'm getting closer to wishing I hadn't done this.
Provider Review
Professor Mennon.
The surgeons were Mr Menon and Mr Lam at UHCW in the UK.