Pancreas Transplantation

[clareb1970]

I read on here that Islet Cell Transplantation was favoured over actual organ (Pancreas) transplantation from a donor. It stated that there were a number of issues if the transplanted pancreas was rejected as it provided other hormones, not just insulin. Well, unless the individuals own pancreas is very diseased it would not be removed so it would be able to provide these other hormones etc. I had a simultaneous pancreas and kidney transplant nearly nine years ago and it is the best thing that has ever happened to me. I had previously struggled to control my blood glucose and as such yo-yo'd from between high levels and multiple hypos. This got me down and made me feel very poorly. I eventually went into renal failure after many years of coping with this.
Since my transplant I have not need to inject insulin whatsoever and my HbA1C is around 5.8. I occasionally get the odd hypo (which I found strange to start with) but my consultant explained that my transplant might get things slighly wrong on occasions, but this I could cope with!! I cannot recommend pancreas transplantation enough to anyone who struggles with unstable blood glucose. It has given me my life back and has eradicated all my other existing diabetic complications, such as diabetic retinopathy, dumbness of the feet and toes etc. The immunosuppressant drugs I take are no bother to me at all and I have not had any side effects after the initial couple of weeks when my body was getting used to them.
I know that my transplant will not last forever and at some point I will need to go back to injecting insulin again. But when that happens, you can bet your life I will be back on the waiting list once more, praying for a second one. I would be interested to hear from anyone who has any thoughts or comments on pancreas transplants or anything else I have mentioned in my post.

 

[Spiker]

Sounds amazing. How many islet transplantation ops are made available by the NHS each year? What are the NICE criteria to be eligible for one?

 

[Spiker]

(let me Google that for myself)

NHS ODT report March 2014 :

On the 31 March 2014, there were 269 patients on the UK active pancreas and islet transplant list, which represents a 1% decrease in number of patients a year earlier. The number of patients on the active pancreas list decreased by 4% to 236 in 2014 while the active islet transplant list increased by 22% to 33 patients in the same time period.

There were 1848 pancreas transplants performed in the UK in the ten year period and 129 islet transplants performed in the six years since islet transplantation was first commissioned in the UK. The number of transplants from donations after brain death and donations after circulatory death increased in the last year to 203 (6%) and 43 (5%), respectively

 

[Robinredbreast]

I read on here that Islet Cell Transplantation was favoured over actual organ (Pancreas) transplantation from a donor. It stated that there were a number of issues if the transplanted pancreas was rejected as it provided other hormones, not just insulin. Well, unless the individuals own pancreas is very diseased it would not be removed so it would be able to provide these other hormones etc. I had a simultaneous pancreas and kidney transplant nearly nine years ago and it is the best thing that has ever happened to me. I had previously struggled to control my blood glucose and as such yo-yo'd from between high levels and multiple hypos. This got me down and made me feel very poorly. I eventually went into renal failure after many years of coping with this.
Since my transplant I have not need to inject insulin whatsoever and my HbA1C is around 5.8. I occasionally get the odd hypo (which I found strange to start with) but my consultant explained that my transplant might get things slighly wrong on occasions, but this I could cope with!! I cannot recommend pancreas transplantation enough to anyone who struggles with unstable blood glucose. It has given me my life back and has eradicated all my other existing diabetic complications, such as diabetic retinopathy, dumbness of the feet and toes etc. The immunosuppressant drugs I take are no bother to me at all and I have not had any side effects after the initial couple of weeks when my body was getting used to them.
I know that my transplant will not last forever and at some point I will need to go back to injecting insulin again. But when that happens, you can bet your life I will be back on the waiting list once more, praying for a second one. I would be interested to hear from anyone who has any thoughts or comments on pancreas transplants or anything else I have mentioned in my post.

That's wonderful news to hear and I see how much your life has benefited from this. and long may it continue for you, If I was offered operation, then I think that would be a yes
Lovely to have met you.

Best wishes and all the best

RRB

 

[noblehead]

Thanks for sharing your story Clareb and welcome to the forum

 

[clareb1970]

Sounds amazing. How many islet transplantation ops are made available by the NHS each year? What are the NICE criteria to be eligible for one?

Hi there, not sure about islet transplantation. Have never gone into that myself as I was always told it was still in its infancy. Of course organ transplants can happen at any time as it did with me. I got the call one morning as I was getting ready for work. I cannot describe the fear and the exitement you feel. Getting a kidney and pancreas from someone amazing person who you have never met, but who has unfortutely passed away... well, it really makes you reassess your life and how you think about things and other people. I wish more organs were available across the country so others could experience the wonderful benefits, which are often life-saving.

Thanks to everyone for the kind welcome . This website is fantastic.

Clare x

 

[Patricia21]

Welcome Clare.
Thanks for sharing your story.
All best wishes.

 

[graj0]

I read on here that Islet Cell Transplantation was favoured over actual organ (Pancreas) transplantation from a donor. It stated that there were a number of issues if the transplanted pancreas was rejected as it provided other hormones, not just insulin. Well, unless the individuals own pancreas is very diseased it would not be removed so it would be able to provide these other hormones etc. I had a simultaneous pancreas and kidney transplant nearly nine years ago and it is the best thing that has ever happened to me. I had previously struggled to control my blood glucose and as such yo-yo'd from between high levels and multiple hypos. This got me down and made me feel very poorly. I eventually went into renal failure after many years of coping with this.
Since my transplant I have not need to inject insulin whatsoever and my HbA1C is around 5.8. I occasionally get the odd hypo (which I found strange to start with) but my consultant explained that my transplant might get things slighly wrong on occasions, but this I could cope with!! I cannot recommend pancreas transplantation enough to anyone who struggles with unstable blood glucose. It has given me my life back and has eradicated all my other existing diabetic complications, such as diabetic retinopathy, dumbness of the feet and toes etc. The immunosuppressant drugs I take are no bother to me at all and I have not had any side effects after the initial couple of weeks when my body was getting used to them.
I know that my transplant will not last forever and at some point I will need to go back to injecting insulin again. But when that happens, you can bet your life I will be back on the waiting list once more, praying for a second one. I would be interested to hear from anyone who has any thoughts or comments on pancreas transplants or anything else I have mentioned in my post.

That's really good news and thank you for sharing and making me aware. I'm fortunate being type II (like saying I was run over by a push bike which was better than being run over by a bus) but pleased that these procedures can be carried out.

 

[Maelstrom]

Hi Clare
My Hubby had kidney and pancreas transplant in 2012 and would recommend any diabetic needing a kidney transplant to push for pancreas too, his renal team were fantastic in supporting him to get on list for dual transplant even when one hospital refused to put him on list (for no reason other than he's a wheelchair user) they referred him to another hospital who did put him on list.
He says it's the best decision he and his team made, the improvement in his health and quality of life is amazing although he still suffers the complications of long term diabetes they've settled down and not getting any worse, he says he'd go through it all again in the future if needed.

From my point of view I'm in total agreement with him it's made such a difference to our lives I no longer fear going out for a few hours and wondering if he's ok or dealing with the night time hypos.

Organ donation is a wonderful gift and makes such a difference to so many lives

Jac

 

[iHs]

Hi there, not sure about islet transplantation. Have never gone into that myself as I was always told it was still in its infancy. Of course organ transplants can happen at any time as it did with me. I got the call one morning as I was getting ready for work. I cannot describe the fear and the exitement you feel. Getting a kidney and pancreas from someone amazing person who you have never met, but who has unfortutely passed away... well, it really makes you reassess your life and how you think about things and other people. I wish more organs were available across the country so others could experience the wonderful benefits, which are often life-saving.

Thanks to everyone for the kind welcome . This website is fantastic.

Clare x

I think it would be lovely for more people to think about donating their organs after they have died. Loads of people always want to be able to receive but very few think seriously about giving........ Something a government should make a ruling on...

I am fairly optomistic that an insulin pump working in tandem with a cgm sensor could with special programming, become the artificial pancreas that we all want, releasing insulin and glucagon to keep bg levels stable no matter what we eat and what we do. Smart insulin is also being investigated and that too will hopefully become a reality

 

[Flowerpot]

Hi Clare and welcome

What an inspiring story, I am so glad the transplant worked well and has transformed your life.

I was referred to be considered for an islet cell or pancreas transplant a few years back due to loss of hypo awareness but backed out due to overwhelming fear of the operation, risks and immuno suppressant drugs. It is so encouraging to read how successful yours has been and that you have found the drugs manageable.

 

[adriana123]

I read on here that Islet Cell Transplantation was favoured over actual organ (Pancreas) transplantation from a donor. It stated that there were a number of issues if the transplanted pancreas was rejected as it provided other hormones, not just insulin. Well, unless the individuals own pancreas is very diseased it would not be removed so it would be able to provide these other hormones etc. I had a simultaneous pancreas and kidney transplant nearly nine years ago and it is the best thing that has ever happened to me. I had previously struggled to control my blood glucose and as such yo-yo'd from between high levels and multiple hypos. This got me down and made me feel very poorly. I eventually went into renal failure after many years of coping with this.
Since my transplant I have not need to inject insulin whatsoever and my HbA1C is around 5.8. I occasionally get the odd hypo (which I found strange to start with) but my consultant explained that my transplant might get things slighly wrong on occasions, but this I could cope with!! I cannot recommend pancreas transplantation enough to anyone who struggles with unstable blood glucose. It has given me my life back and has eradicated all my other existing diabetic complications, such as diabetic retinopathy, dumbness of the feet and toes etc. The immunosuppressant drugs I take are no bother to me at all and I have not had any side effects after the initial couple of weeks when my body was getting used to them.
I know that my transplant will not last forever and at some point I will need to go back to injecting insulin again. But when that happens, you can bet your life I will be back on the waiting list once more, praying for a second one. I would be interested to hear from anyone who has any thoughts or comments on pancreas transplants or anything else I have mentioned in my post.

I have received the islet cell transplants and I'm loving life but like yourself with the pancreas transplant I still get the odd hypo and still on an insulin pump..The only thing different is now in hypo aware..Which to me is my life savor..Best of luck..My next move is to get the new pancreas

 

[LynnC]

My husband currently awaiting kidney/pancreas transplant, good to hear youre so positive about it, its all very scary yet exciting

 

[clareb1970]

Hi Clare
My Hubby had kidney and pancreas transplant in 2012 and would recommend any diabetic needing a kidney transplant to push for pancreas too, his renal team were fantastic in supporting him to get on list for dual transplant even when one hospital refused to put him on list (for no reason other than he's a wheelchair user) they referred him to another hospital who did put him on list.
He says it's the best decision he and his team made, the improvement in his health and quality of life is amazing although he still suffers the complications of long term diabetes they've settled down and not getting any worse, he says he'd go through it all again in the future if needed.

From my point of view I'm in total agreement with him it's made such a difference to our lives I no longer fear going out for a few hours and wondering if he's ok or dealing with the night time hypos.

Organ donation is a wonderful gift and makes such a difference to so many lives

Jac

Hi Jac, great to hear your story and that your hubby is doing so well. It is shocking that one hospital turned him down due to him being in a wheelchair - that is disgusting and has no bearing on his suitability for a transplant! I am also in a wheelchair. I cannot be more positive about the second chance at life that an organ transplant gives you. It really is a miracle, made possible by the expertise of surgeons and the selfless act of a total stranger.

 

[clareb1970]

My husband currently awaiting kidney/pancreas transplant, good to hear youre so positive about it, its all very scary yet exciting

I am so excited for you and your husband! Your lives will change dramatically for the better. The surgery is quite significant - I had a large "zipper" from my sternum to the top of my pants! But it is now undetectable. Good luck and I hope you aren't kept waiting too long. X

 

[LynnC]

A year so far, scary waiting for that phone call to come, ur an inspiration !

 

[clareb1970]

Hi Clare and welcome

What an inspiring story, I am so glad the transplant worked well and has transformed your life.

I was referred to be considered for an islet cell or pancreas transplant a few years back due to loss of hypo awareness but backed out due to overwhelming fear of the operation, risks and immuno suppressant drugs. It is so encouraging to read how successful yours has been and that you have found the drugs manageable.

Hello flowerpot!

If I could offer you any advice, it would be to reconsider the transplant (depending on your current situation of course). Yes, the surgery involves a big operation, but you are fast asleep and know nothing! I had an incision from my sternum to my pants which looked like a zipper, but is now invisible! The immunosuppressant drugs are great. They are constantly improving them and they have very few or no side effects. The only side effect I got was that I went a bit hairy for a few weeks but that pretty soon went back to normal. No weight gain other than to reach a normal healthy weight. I went from looking I'll all the time to looking well and happy! My hair and skin improved tremendously.

I would hate to think that you totally dismissed the idea because of the operation or drugs. They really are a tiny consideration in the big scheme of things.

 

[Smitten73]

If it were possible, I'd give my 16 year old T1 my pancreas in a heartbeat.

 

[adriana123]

Sounds amazing. How many islet transplantation ops are made available by the NHS each year? What are the NICE criteria to be eligible for one?

I received mine in Edinburgh and was the 13th I'm the first in all Ireland to receive it..I got it although I was the youngest then at 38yr old which will be 2 yrs ago on the 7th of June..I was having up to 5 hypos daily and only took T1 when I was 33yrs..I never had any awareness and was taking them also during the night..I had fallen down my stair on numerous occasions..I was passing out in shops on the road and ended up not leaving my home I had an 11&8 year old children and was no life for them never mind me as if I wasn't hypo I was sleeping..But also saying that on the back of so many hypos I also took ketones and was put into induced coma's..My consultant said I really had no option but to try get funding for the islet cell transplants but I was refused on my first assessment..But My diabetic team fought tooth and nail and owe them my life..Im getting married in July which I was told in January 2013 I wouldn't live a year as if diabetes didn't kill me a fall surely would!!!

 

[Maelstrom]

My hubby said to say hi @clareb1970
Like you he's had no problems at all with immunosuppressants he's on Adoport (tacrolimus) and Mycophenolate mofetil he was on dialysis (capd) for 3 years prior to his transplant so had put on weight mainly on his stomach within 4 weeks of the op he was back to pre dialysis weight, he loves his "zip" especially the way it goes round his belly button and used to take every opportunity he could to flash it at anyone interested lol

He waited 18 months for his transplant and only had 1 false alarm, he was in hospital 2 weeks post op.

He had his op at Oxford which is quite a distance from us so when he was discharged they sent a copy of the operation notes and ward notes home with him to pass on to our local team to continue aftercare the op notes were a very interesting read