Help Ruth get a Gastric Pacemaker
Donation protected
Updated following emergency admission to St James Hospital, Leeds on 5th August 2021. Basically I'd lost 5 stone and suffering from low potassium, B vitamins etc and wasn't far from checking out for good.
Luckily for me Jimmy's Angels saved my life and have been looking after me for the last 3 plus weeks. I always thought I was invincible, I'm not but someone up there is certainly looking after me as another 24 hours and it might have been a different story. Thanks to Dr Pitt, Mandy the paramedic and the Jimmy's Angels, I've lived to see another day, week, month, year, decade, etc .
So it is confirmed I have Gastroparesis and on top if everything else I have malabsorbtion and EDS. There is no cure but the new medication and NJ tube feeding has me more stable now. There is the option of a gastric pacemaker, this is not an option on the NHS in England but we are pursuing this as a private treatment as it will mean I don't need to be tube fed and could lead a normal life.
I've left the original text below but Professor Aziz still hasn't graced me with a reply so I'll be sticking with my Leeds lads and lasses and just doing the private/NHS treatments along side each other with the exceptional hero's at Jimmy's.
I've noticed that for some reason it has my son as beneficiary, not sure why it says I'm the organiser and he's the beneficiary as it's the other way round, while I've been in hospital he's taken over the financial side of this as I've been too poorly to deal with it all. Just wanted to mention that incase anyone was as confused as me lol.
I've not been myself the last few months, I've locked myself away from the world. My mental health is at an all time low and I either cry or want to smash something up through frustration and despair. I've pushed everyone away as mentally I can't deal with whats happening to me. My son is exhausted as he is working and trying to look after me and do everything. I am devastated that at 43 years old I can't even physically get into the garden anymore because I'm so ill and weak. I feel a burden, helpless and so very angry that I can't just push through and deal with this.
I don't even know why I'm so embarrassed about something I can't control. My health has taken a huge dive and I've now lost 4 stone. I look so awful I can't even look at myself without crying. I have pushed everyone away and refused visitors, I don't want people to see me like this. Those that have seen me like this and already know what's happening have been so amazing and for that I truly thank you for your support and an ear to bend and also for pushing me into posting this and finally asking for help.
I haven't been able to eat for months, my stomach has decided it doesn't want to work anymore (gastroparesis is what they are saying following gastroscopy). I can chew and swallow food but it doesn't digest, so it makes me sick, often resulting in an ambulance having to be called as my heart rate and blood pressure fall dangerously low.
I've been working with a dietician at the hospital since January but the weight still continues to drop, even though they have managed to slow the weight loss down. My body is just skin hanging from my bones, I've aged 40 years and I am desperately ill. I was referred to the top Professor in London but he is not taking on NHS patients at the moment. The local gastroenterologists don't know how to treat me as I am too complex. My dietician requested an NJ feeding tube as I can't sustain my weight. Unfortunately I can't have the temporary tube that goes up my nose and down into my intestines because of other issues I have. I can't have the normal medication that could help because of the other meds I take. Food is sitting in my stomach and basically rotting so I am only allowed liquids but even those often come up.
Basically I am starving to death and I'm terrified!
The Professor I need to see is still taking on private patients and I've had a boot up the rear, from friends to swallow my pride and set up this page. £300 is needed for the first telephone appointment. We are hoping that he will then continue my care as an NHS patient but if not we will have to deal with that when it happens.
If you feel you can support and help us then I would really appreciate your help. As much as it pains me to admit it, we can't manage on our own anymore.
If anyone feels they are in a position to help with fundraising it would be much appreciated and my son Dan is selling some hair accessories and word art to try and raise the money. He's exhausted and can't keep going as he has been, he will burn himself out. I am very poorly but I'm still his Mum.
I've tried to put as much detail as possible to answer any questions you might have.
Thanks for reading ❤
Luckily for me Jimmy's Angels saved my life and have been looking after me for the last 3 plus weeks. I always thought I was invincible, I'm not but someone up there is certainly looking after me as another 24 hours and it might have been a different story. Thanks to Dr Pitt, Mandy the paramedic and the Jimmy's Angels, I've lived to see another day, week, month, year, decade, etc .
So it is confirmed I have Gastroparesis and on top if everything else I have malabsorbtion and EDS. There is no cure but the new medication and NJ tube feeding has me more stable now. There is the option of a gastric pacemaker, this is not an option on the NHS in England but we are pursuing this as a private treatment as it will mean I don't need to be tube fed and could lead a normal life.
I've left the original text below but Professor Aziz still hasn't graced me with a reply so I'll be sticking with my Leeds lads and lasses and just doing the private/NHS treatments along side each other with the exceptional hero's at Jimmy's.
I've noticed that for some reason it has my son as beneficiary, not sure why it says I'm the organiser and he's the beneficiary as it's the other way round, while I've been in hospital he's taken over the financial side of this as I've been too poorly to deal with it all. Just wanted to mention that incase anyone was as confused as me lol.
I've not been myself the last few months, I've locked myself away from the world. My mental health is at an all time low and I either cry or want to smash something up through frustration and despair. I've pushed everyone away as mentally I can't deal with whats happening to me. My son is exhausted as he is working and trying to look after me and do everything. I am devastated that at 43 years old I can't even physically get into the garden anymore because I'm so ill and weak. I feel a burden, helpless and so very angry that I can't just push through and deal with this.
I don't even know why I'm so embarrassed about something I can't control. My health has taken a huge dive and I've now lost 4 stone. I look so awful I can't even look at myself without crying. I have pushed everyone away and refused visitors, I don't want people to see me like this. Those that have seen me like this and already know what's happening have been so amazing and for that I truly thank you for your support and an ear to bend and also for pushing me into posting this and finally asking for help.
I haven't been able to eat for months, my stomach has decided it doesn't want to work anymore (gastroparesis is what they are saying following gastroscopy). I can chew and swallow food but it doesn't digest, so it makes me sick, often resulting in an ambulance having to be called as my heart rate and blood pressure fall dangerously low.
I've been working with a dietician at the hospital since January but the weight still continues to drop, even though they have managed to slow the weight loss down. My body is just skin hanging from my bones, I've aged 40 years and I am desperately ill. I was referred to the top Professor in London but he is not taking on NHS patients at the moment. The local gastroenterologists don't know how to treat me as I am too complex. My dietician requested an NJ feeding tube as I can't sustain my weight. Unfortunately I can't have the temporary tube that goes up my nose and down into my intestines because of other issues I have. I can't have the normal medication that could help because of the other meds I take. Food is sitting in my stomach and basically rotting so I am only allowed liquids but even those often come up.
Basically I am starving to death and I'm terrified!
The Professor I need to see is still taking on private patients and I've had a boot up the rear, from friends to swallow my pride and set up this page. £300 is needed for the first telephone appointment. We are hoping that he will then continue my care as an NHS patient but if not we will have to deal with that when it happens.
If you feel you can support and help us then I would really appreciate your help. As much as it pains me to admit it, we can't manage on our own anymore.
If anyone feels they are in a position to help with fundraising it would be much appreciated and my son Dan is selling some hair accessories and word art to try and raise the money. He's exhausted and can't keep going as he has been, he will burn himself out. I am very poorly but I'm still his Mum.
I've tried to put as much detail as possible to answer any questions you might have.
Thanks for reading ❤
Organizer and beneficiary
Ruth Maclean
Organizer
England
Daniel Sykes
Beneficiary