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Type 1 Pancreas Transplant

samowen268

Well-Known Member
Messages
103
Type of diabetes
Type 1
Treatment type
Insulin
Hi all, this is a very random question but I hadn't heard of this before, apparently it is possible for a pancreas transplant procedure to ultimately eliminate the need of insulin injections, has anyone ever heard of this or know anyone who has experienced a successful transplant?? Blew my mind haha.
 
There has been some discussions on this before..

I'm no expert in the field.
But I'm guessing the "autoimmune" thing taking out the beta cells in the original pancreas (causing T1 in the first place.) could "work over" the transplant too?
Then there is the anti rejection drugs involved to stop the transplanted organ getting.. Rejected?
 
I think there has been some recent research into transplanting stem cells to take over the insulin production.
Because these are "your" cells, it overcome the rejection problem.
And they are not transplanting them in the pancreas (I read one article about liver and another suggested somewhere else which I forget) to try and overcome to autoimmunity (if that's the right word).

Any organ transplant is a major undertaking with multiple risks so I don't think there is much appetite to do it unless diabetes management is very bad (which usually means lots of unpredictable hypos).
 
Hi all, this is a very random question but I hadn't heard of this before, apparently it is possible for a pancreas transplant procedure to ultimately eliminate the need of insulin injections, has anyone ever heard of this or know anyone who has experienced a successful transplant?? Blew my mind haha.

Hi, as I understand it ... its rare for anyone to have just a pancreas, however I do know of people who whilst having a replacement kidney have also had a pancreas transplant. The procedure is relatively new, and transplanting a pancreas carries its own set of problems (I don't think it lasts long outside the body). The risks from the immune suppressants are considered to outweigh the benefits from just having the pancreas, although there have been people who had it due to needle phobias etc.
 
Yes, a pancreas transplant can cure type 1. I have been assessed in the transplant clinic and offered to be put on the list for either a pancreas transplant or an islet cell transplant.

Although a pancreas transplant, if it works, has the potential to be curative, it got struck straight off the list of consideration for be because the procedure has a 2% mortality risk.

Islet cell transplant also got struck off the list due to the fact the main benefit really is alpha cell restoration and I'm convinced my alpha cells work, whereas beta cell function is gauged by reduction in insulin requirements, not even coming off insulin. The procedure hasn't caused any deaths in the uk, but does carry a risk of severe complications and the immunosuperessants also carry risks of skin cancer and kidney damage. Being a type 1 diabetic I'm already fairly well scared of dialysis (something the doctor attempting to consent me did not take into sufficient consideration) and I have already had a melanoma without any drugs causing it. So the risks/benefits of islet cell transplant dint work out for me.

Having said that, the transplant clinic are still fairly keen to get me on the list. They will do a pancreas transplant alone, but success rates are better if its a pancreas and kidney transplant - although that's probably because the vast majority of pancreases transplants are going to diabetics already in kidney failure.
 
The two ladies I know who have had pancreas transplants both had kidneys at the same time; one lady had the pancreas when she had her second kidney transplant. She now has 4 kidneys as they don't routinely remove the defective ones, unless leaving them is dangers (like in cancer) .

Both ladies have "lost" their T1, and are very well, but the anti-rejection do take their toll over the years.
 
I find these types of threads very interesting!

@catapillar, you mentioned alpha cell regeneration in T1's although we only ever really hear about beta cell destruction when it comes to T1. Are there T1's who have shot alpha cells also?

Another question I'll throw out (and I don't mean to derail) is would the pancreas go back to normal if the autoimmune response that kills the beta cells was eliminated? As I understand the beta cells are still made but quickly destroyed by the immune system. Are our pancreases totally inoperative or simply rendered useless because of an autoimmune onslaught?

Interesting:)
 
I find these types of threads very interesting!

@catapillar, you mentioned alpha cell regeneration in T1's although we only ever really hear about beta cell destruction when it comes to T1. Are there T1's who have shot alpha cells also?

Another question I'll throw out (and I don't mean to derail) is would the pancreas go back to normal if the autoimmune response that kills the beta cells was eliminated? As I understand the beta cells are still made but quickly destroyed by the immune system. Are our pancreases totally inoperative or simply rendered useless because of an autoimmune onslaught?

Interesting:)

Good question.. I assumed they haven't got to the bottom of the autoimmune thing in T1, thus to draw an analogy; a transplant would be like someone new walking into a club, getting beaten up, then having constantly to show ID to avoid getting thrown out by short memory'd security .....???

Eliminating the auto immune response makes sense on so many levels...
 
Good question.. I assumed they haven't got to the bottom of the autoimmune thing in T1, thus to draw an analogy; a transplant would be like someone new walking into a club, getting beaten up, then having constantly to show ID to avoid getting thrown out by short memory'd security .....???

Eliminating the auto immune response makes sense on so many levels...
Your analogy is, erm, different @Jaylee - I'll give you that:)

Transplants aside, my query is mainly with regards to our existing organs - which we know aren't working right (or more to the point: aren't allowed to work right) due to the autoimmune thingy ma-bob.

So if the T1 autoimmune riot was to be stopped by "the miracle fix", could our pancreases carry on like nothing had even happened? Or is there a hefty element of irreversible damage caused by the memory impaired club bouncers?;)

I appreciate that may be an impossible question to answer and why I really don't want to derail this thread. Apologies in advance @samowen268:) Just let me know if this isn't appropriate to your thread!
 
Your analogy is, erm, different @Jaylee - I'll give you that:)

Transplants aside, my query is mainly with regards to our existing organs - which we know aren't working right (or more to the point: aren't allowed to work right) due to the autoimmune thingy ma-bob.

So if the T1 autoimmune riot was to be stopped by "the miracle fix", could our pancreases carry on like nothing had even happened? Or is there a hefty element of irreversible damage?

I appreciate that may be an impossible question to answer and why I really don't want to derail this thread. Apologies in advance @samowen268:) Just let me know if this isn't appropriate to your thread!

It's fine I'm enjoying reading, carry on guys!!
 
Small point...I got my diabetes from steroids as part of my anti-rejection treatment following a renal transplant...and this is not uncommon at all in kidney transplant patients. Presumably, unless the immune system is somehow by-passed in a way that negates the need for such drugs, there is a risk of developing fresh steroid induced diabetes even if the pancreas is replaced?
 
I know nothing about transplants but I have quite a lot of experience with immune suppressant drugs. Sooner or later they lose their effectiveness. The body is very good at getting its way even when that way is destructive. I have been on amevive, humira, cyclosporin, embrel, remicade, and now stelara which is slowly losing its effectiveness after 3 years. They almost all seemed to have about a 3 year span of effectiveness. I was on the max dose of methotrexate throughout all of these drugs to prevent my system becoming immune to them. It did not work. There are significant side effects to all of these drugs including cancer. Something to think about.

And I forgot to say, they are all administered by injection or IV
 
@catapillar, you mentioned alpha cell regeneration in T1's although we only ever really hear about beta cell destruction when it comes to T1. Are there T1's who have shot alpha cells also?

Alpha cells trigger the release of glucagon in response to a hypo. It's well recognised that the alpha cell function is vulnerable to, essentially, being worn out. So alpha cell function in a long standing type 1 can be expected to have deteriorated. Reduced alpha cell function in a fairly recently diagnosed type 1 (like me, who was seeing the transplant team at 6 years diagnosed) is a significant concern because my alpha cells have to be my last line of defence against dying from hypoglycaemia for the next 40 or 50 years. Which is why you want to treat a hypo before your alpha cells are triggered, because each time they are used, they are worn out a little more. Unfortunately, as I'm completely hypo unaware I can be normal, normal, unconcious, there are no warning symptoms for me, I just pass out. But then the last time I woke spontaneously from a severe, unconcious hypo was mid-July. The only thing that would have woken me up was alpha cell functionality, but I was unconcious under my bed for about 2hrs and woke up with some suspicious bruising on my shoulders and the contents of my bedside table strewn around the room making me think I might have passed out and done some fitting.
 
Hi all, this is a very random question but I hadn't heard of this before, apparently it is possible for a pancreas transplant procedure to ultimately eliminate the need of insulin injections, has anyone ever heard of this or know anyone who has experienced a successful transplant?? Blew my mind haha.


There's a thread about it here from a few months back with comments from a couple of members who've had transplants:

http://www.diabetes.co.uk/forum/threads/cured-of-type-1.115657/
 
I know nothing about transplants but I have quite a lot of experience with immune suppressant drugs. Sooner or later they lose their effectiveness. The body is very good at getting its way even when that way is destructive. I have been on amevive, humira, cyclosporin, embrel, remicade, and now stelara which is slowly losing its effectiveness after 3 years. They almost all seemed to have about a 3 year span of effectiveness. I was on the max dose of methotrexate throughout all of these drugs to prevent my system becoming immune to them. It did not work. There are significant side effects to all of these drugs including cancer. Something to think about.

And I forgot to say, they are all administered by injection or IV

I have experience of both transplant and immuno suppressants and disagree with your post (which, fair enough, may be your personal experience but it's not mine). Following a transplant over 2 years ago, I have been on drugs to suppress my immune system and none of them have been administered by injection or IV. While, it can be argued that these drugs lose their effectiveness sooner or later, there is also evidence of the effect of certain drugs lasting a very long time indeed. In Scotland, some of the drugs mentioned above are no longer used as anti-rejection meds for transplant patients while they may well be issued for other things. My main immuno suppressant is Prograf (or Tacrolimus), a very effective and flexible drug. I regularly attend clinics for blood tests and the dosage of this drug in particular is tweaked depending on the increase or decrease of certain levels. The approach to how an individual's post-transplant treatment is handled has progressed greatly in recent years and the way in which the performance of anti-rejection drugs is monitored in the individual now differs greatly from the one-size-fits-all, just take the meds and good luck approach that has been kicked into touch. As for the significant side effects...a] I have experienced none of the possible side effects that can be associated with the drugs, and b] those in need of a transplant have no option! I would rather not think about the possibility of cancer, thanks, or of meds failing as I instead choose to be positive in my attitude to my transplant...further, I am pretty sure that one hell of lot of people get cancer whether they take these drugs or not...no? Nothing is perfect.
 
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I have experience of both transplant and immuno suppressants and disagree with your post (which, fair enough, may be your personal experience but it's not mine). Following a transplant over 2 years ago, I have been on drugs to suppress my immune system and none of them have been administered by injection or IV. While, it can be argued that these drugs lose their effectiveness sooner or later, there is also evidence of the effect of certain drugs lasting a very long time indeed. In Scotland, some of the drugs mentioned above are no longer used as anti-rejection meds for transplant patients while they may well be issued for other things. My main immuno suppressant is Prograf (or Tacrolimus), a very effective and flexible drug. I regularly attend clinics for blood tests and the dosage of this drug in particular is tweaked depending on the increase or decrease of certain levels. The approach to how an individual's post-transplant treatment is handled has progressed greatly in recent years and the way in which the performance of anti-rejection drugs is monitored in the individual now differs greatly from the one-size-fits-all, just take the meds and good luck approach that has been kicked into touch. As for the significant side effects...a] I have experienced none of the possible side effects that can be associated with the drugs, and b] those in need of a transplant have no option! I would rather not think about the possibility of cancer, thanks, or of meds failing as I instead choose to be positive in my attitude to my transplant...further, I am pretty sure that one hell of lot of people get cancer whether they take these drugs or not...no? Nothing is perfect.

As I said, I know nothing about transplants or the drugs to stop rejection. The drugs I mentioned are the ones that I have personal experience with for autoimmune conditions, several of them. I was speaking more in terms of stopping the autoimmune attack that caused type 1 in the first place and stopping the body from attacking a new pancreas and causing type 1 to develop again. I was not speaking about anti rejection drugs. I guess I should have been clearer.
 
As I said, I know nothing about transplants or the drugs to stop rejection. The drugs I mentioned are the ones that I have personal experience with for autoimmune conditions, several of them. I was speaking more in terms of stopping the autoimmune attack that caused type 1 in the first place and stopping the body from attacking a new pancreas and causing type 1 to develop again. I was not speaking about anti rejection drugs. I guess I should have been clearer.

I think the problem lies in the fact that anti-rejection drugs are immuno suppressants.
 
I have had the SPK transplant and after about a year things started to settle down, both organs working well. The big problem i have is now that my BG is a normal level the true extent of the diabetes has come to light. My nerve endings are shot to pieces and very painful and as part of the op they cut away some nerves away from the bladder. This has caused a disstented bladder meaning i can hold over 2 litres of fluid so i have self catherterize my self regular and have have problems with my bowel due to the medication. I also have tenderness around the organs and the wound but please do not be put off having the transplant as i am the only one the doctor has ever seen this happen to, lucky me. The only thing that i was not prepared for was when i came out of hospital and effect it has on the people around you, i think this needs to be looked in to so everyone knows as much as possible. A week after my op i broke down in tears at the thought of what i had put my parents and children through but also the fact that a person had to lose their life so i could have mine. You think about the family of the who allowed me to live at a time when they were going through so much pain and how can you say thank you, it is two and a half years since my transplant i still feel guilty for their lose. The fact that i am bringing up a 12 and 14 year old children as a single parent i am blessed to have two wonderful kids and parents because all they have seen happen to me that they should not have to see. The reason i had the transplant was for my children but sometimes i am sharp with them and its because i cannot do the things that a healthy parent can do. my final bit of advice is learn as much as you can about the op and include your family in this, most of us who have a transplant need to have it but if like me you get one. Every morning you wake up be thankful and look after them organs because its your second chance at life and tell those who are closest to you how much you love and thank them for all their help. PS do not forget the transplant team who work under a lot of pressure for not to be valued by the people who run this country
 
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