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"Cured" of type 1?

It's just respite, not cure.

For people who have had kidney + pancreas transplant 85% had working panreases after 1 year and 75% after 5 years. Presumably not all pancreas transplants are on type 1 diabetics.

There's a high mortality risk for the surgery and post op rejection. And risks from life long immunosuppressants.
 
Yes your right it's not a cure, it means I no longer have to inject insulin, take drugs for diabetes, however I still watch what I eat and take 12 different medications. I still have some of the diabetic complications some of which have progressed unfortunately, I am now 20 years post Pancreas Transplant and living my life.
 
TopoGigi said:
Yes your right it's not a cure, it means I no longer have to inject insulin, take drugs for diabetes, however I still watch what I eat and take 12 different medications. I still have some of the diabetic complications some of which have progressed unfortunately, I am now 20 years post Pancreas Transplant and living my life.
Click to expand...
Hi TopoGifi :) Do you mind telling us a bit more about the transplant? How do you compare it to the life before the operation? Were you type1?
 
IMG_2034.JPG This the article that appeared in The Daily Mail 2005
I was Type 1 Diabetic from the age of 16, not a very good time to have diabetes in my teen years, I rebelled, so I understand so many comments on here from young desperate Type 1 diabetics.
I had many complications and my then Diabetic consultant put me forward for a Pancreas transplant in 1997, I had a very rocky road post surgery and nearly didn't make it and have had many health related issues since, but I'm a survivor and will carry on looking out for number one.
 
Incredible story @TopoGigi - we do from time to time get members who ask about this sort of treatment as an alternative to a lifetime's worth of injections and testing, however as with any invasive procedure it comes with it's own set of complications, can you tell us some more about what your life was life before the surgery ? Also what the implications of this surgery have been for you and what the side effects of taking immuno-suppressants have been like ? Thanks for sharing your story with us :)
 
Hi @TopoGigi I am currently on the SPK (simultaneous Pancreas-Kidney) waiting list, and whilst I have no choice over the kidney transplant (I have stage 5 CKD), I wonder if you mind telling me if you feel the pancreas transplant was the right decision for you, with hind-sight? The reason I ask, is that for me, the pancreas part adds significant risk, but having been diabetic for 30 years, was too tempting, especially as the implication is that it should cease (for the life of the organ) the progress of diabetes related complications.
 
Not me, but my nephew had a kidney and pancreas transplant.
So far so good (several years).

I think that the decision was that if there was surgery then he might as well go the whole hog.
His critically failing kidneys were due to long term refusal to manage his T1 (diagnosed at 9 years old) so I assume that having the pancreas reduced the management load to anti-rejection drugs only, with no chance to fall back into his previous bad habits.

Anyway, he seems to be managing O.K. thankfully.
 
paulliljeros said:
Hi @TopoGigi I am currently on the SPK (simultaneous Pancreas-Kidney) waiting list, and whilst I have no choice over the kidney transplant (I have stage 5 CKD), I wonder if you mind telling me if you feel the pancreas transplant was the right decision for you, with hind-sight? The reason I ask, is that for me, the pancreas part adds significant risk, but having been diabetic for 30 years, was too tempting, especially as the implication is that it should cease (for the life of the organ) the progress of diabetes related complications.
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JuicyJ life before Pancreas Transplant was okay but since my mid twenties I'd had Peripheral Neuropathy and severe Gastroparesis for which I had two gastric surgeries, but my Diabetic Consultant was concerned about my ongoing deterioration and was in contact with a reknowned surgeon who was starting a pancreas transplant programme in the U.K. and thought I might be a suitable candidate, after much consideration and several consultations with the Transplant team I agreed that this was the better option but I was going into the unknown, I read up as much as I could mainly US studies but at that particular time there were no other UK patients that I could share their experience with, very scarey compared to the support and groups that are around now, many of which are on FB.
After a 'work up' of approximately 6 months I was called 2 weeks after going on the transplant list which was a shock as I wasn't prepared for what might happen. After many serious life threatening complications and additional surgery I was allowed home 5 weeks later but had to return to a transplant clinic 3 times a week for many months, now 20 years later I still attend the same clinic every 2 months or sooner depending on blood test results. I have had many biopsies of the pancreas and had mild rejection on a couple of occasions for which thank god has been treated. I've also had other health issues some related to being immunosuppressed and some cardiac problems, a pacemaker and stents in 2013 and oh I now have CKD stage 4. My transplant consultant has told me on many occasions that if I'd not gone ahead with the transplant then I would not be here today so it says it all really. Would I change things? No . I am happy, fairly healthy and live each day as anyone else would, although I take immunosuppressants plus a whole load of other drugs it doesn't worry me.
Hope that answers a few of your questions
 
paulliljeros said:
Hi @TopoGigi I am currently on the SPK (simultaneous Pancreas-Kidney) waiting list, and whilst I have no choice over the kidney transplant (I have stage 5 CKD), I wonder if you mind telling me if you feel the pancreas transplant was the right decision for you, with hind-sight? The reason I ask, is that for me, the pancreas part adds significant risk, but having been diabetic for 30 years, was too tempting, especially as the implication is that it should cease (for the life of the organ) the progress of diabetes related complications.
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Paul, see my previous post it might help.
We're talking about 20 years ago with my transplant, things have moved on greatly since I had mine, more experienced surgeons, better techniques, etc;
Try to keep as fit as you can pre transplant as this helps greatly with recovery, I know that's difficult as you're at end stage.
There is always a risk with any major surgery but this is a one off chance, it is much more difficult to get a second transplant due to tissue typing, etc;
There are some groups on FB "Waiting for a SPK transplant" I think plus many others.
Are you having your transplants in Oxford? I know that they have done over 30 SPK transplants there in the last report I looked at.
 
Thank you for replying @TopoGigi . Sadly there are many risks, but it is heartening to hear it your pancreas has survived 20years! I am actually at Guys, and I have to say, the renal care team is amazing. I think I'm particularly interested in someone's experience of the trade off between lifelong immunosuppressant's (and anything else I haven't thought of) vs. a diabetes free life. For example, I already have "OCD tendencies" when people cough near me on a train, and wonder how life changes after the operation. Each persons view is different depending on their involvement, and the doctors in particular give a very pragmatic response so first hand experience is of particular interest to me.
 
I understand,
I'm under the care of West London Renal Transplant Centre so that's Imperial College (St Mary's, Hammersmith, Charing Cross) and they too have been marvellous over the years and still are, they look after you totally.
The first couple of years were really tough, yes you are going to be susceptible to catching everything and anything, but that goes with the territory, the immunosuppression will be the same whether you have a Kidney, or Pancreas or both, be prepared for the unexpected but on the other hand you may sail through it with no problems it's a bit of luck of the draw, positivity helps. I try to avoid situations where people are not well but that's not always possible, such as hospital visits, I frequently wash my hands but also travel on public transport, I've got to live my life.
I have a few friends that have had a SPK , my friend Jo is 19 years out and doing well, she owns and runs a dog breeding a training kennels in Wiltshire and we meet and support each other frequently.
Is it possible to talk to other patients at Guys or just use FB to join one of these groups, they've been a great help to me over the years, it's a way of sharing our thoughts....
 
@TopoGigi
your posts on this thread are truly uplifting and amazing.

T1D for 44 years here -- so I hope I "get it"
you are just a fabulous inspiration to me
thank you for your kind insights !!
 
TopoGigi said:
View attachment 21835 This the article that appeared in The Daily Mail 2005
I was Type 1 Diabetic from the age of 16, not a very good time to have diabetes in my teen years, I rebelled, so I understand so many comments on here from young desperate Type 1 diabetics.
I had many complications and my then Diabetic consultant put me forward for a Pancreas transplant in 1997, I had a very rocky road post surgery and nearly didn't make it and have had many health related issues since, but I'm a survivor and will carry on looking out for number one.
Click to expand...
Thank you for sharing your story :) Amazing story. Please come to one of our type1 meetups if you fancy. Would be great to talk in person :)
Link to our fb group https://www.facebook.com/groups/864727986969226/
 
TopoGigi said:
Is it possible to talk to other patients at Guys or just use FB to join one of these groups, they've been a great help to me over the years, it's a way of sharing our thoughts....
Click to expand...
Thank you, once again, for talking so candidly. The transplant team organised a transplant seminar, that was attended by one lady who had been through the SPK, and whilst she was very helpful, they are not common. I also suspect people are more guarded, when they talk in front of their medical teams! I will investigate the FB group. Thank you for your feedback
 
pinewood said:
Is this just more false press reporting?

I thought a pancreas transplant wasn't a cure because, in the end, the beta cells will just get destroyed again?

http://www.scotsman.com/news/ten-years-of-living-life-as-a-cured-type-1-diabetic-1-4347391
Click to expand...

I had a kidney and pancreas transplant 11 years ago. You are correct in that it is not a cure, but it can give you years of respite from T1 diabetes. I take three types of immunosuppressants which i have no problem with. Initially, there were some minor side effects but these only lasted a few weeks till my body became accustomed to them.

For some diabetics a pancreas transplant may seem an excessive way to treat diabetes, but they perhaps don't suffer from many diabetes related complications. To me it was an absolute godsend.

My T1 control had been fine initially but after being pregnant 4 times in close succession (2 children, 2 miscarriages) it seemed to go downhill with swings in my BS I could not explain. The hypos were horrendous and eventually it made me nervous of going out for fear of having one in a public place. My eyes and kidneys suffered as a result. Luckily my eyes are now ok but I eventually needed a kidney transplant, so I was put down for a pancreas at the same time.

I love checking out this site and reading about the progression in diabetic care - something way overdue considering how many people are affected. It would be wonderful if one day there was a way if inserting insulin producing cells into diabetics. When you consider the advances in transplants, this no longer seems an impossible wish.
 
paulliljeros said:
Thank you, once again, for talking so candidly. The transplant team organised a transplant seminar, that was attended by one lady who had been through the SPK, and whilst she was very helpful, they are not common. I also suspect people are more guarded, when they talk in front of their medical teams! I will investigate the FB group. Thank you for your feedback
Click to expand...

If I can answer any of your pancres queries I am only too happy to help. I received a kidney and pancreas transplant 11 years ago and it went really well.

Clare
 
paulliljeros said:
Thank you for replying @TopoGigi . Sadly there are many risks, but it is heartening to hear it your pancreas has survived 20years! I am actually at Guys, and I have to say, the renal care team is amazing. I think I'm particularly interested in someone's experience of the trade off between lifelong immunosuppressant's (and anything else I haven't thought of) vs. a diabetes free life. For example, I already have "OCD tendencies" when people cough near me on a train, and wonder how life changes after the operation. Each persons view is different depending on their involvement, and the doctors in particular give a very pragmatic response so first hand experience is of particular interest to me.
Click to expand...

I have been on immunosuppressants 11 years (SKP transplant) and to be honest have not noticed much difference from when I was a T1 diabetic in terms of side effects or risk of infection. As a diabetic if I did get a virus or bacterial infection it probably lasted a little longer than a non diabetic, but nothing excessive. After taking immunosuppressants I am not sure if it is any different. Taking tablets twice a day instead of injecting 4 times a day is a bonus, as is not having to do a stream of finger pricking. I do get my bloods done every three months which checks my kidney function and HbA1c. I attend the Renal Transplant Clinic at Manchester Royal Infirmary (where I received my transplant) every 6 months or whenever I want to if I am concerned about anything. My Consultant is amazing and extremely down to Earth.

For me, life is definitely better post transplant, however, everyone has their own personal experience and views.
 
catapillar said:
It's just respite, not cure.

For people who have had kidney + pancreas transplant 85% had working panreases after 1 year and 75% after 5 years. Presumably not all pancreas transplants are on type 1 diabetics.

There's a high mortality risk for the surgery and post op rejection. And risks from life long immunosuppressants.
Click to expand...

Just wondered where the information from your last paragraph came from? When I had my pancreas and kidney transplant 11 years ago mortality figures were very low and post surgery rejection was easily spotted then treated with high dose steroids for a few days. With regard to immunosupprants, not sure what you call "risks". Yes, they have to dampen your immune system otherwise the transplant may reject, but what drugs and the doses you receive are finely tuned to your body and the dose you receive is just enough to stop rejection. Advances are being made with immunosuppression at a fast rate and produce little or no side effects. One drug I take initially made me a bit hairy for a few weeks. I had the most lustrious head of hair ever, but needed to shave my legs more often!

I am not saying there aren't incidents that dont go to plan or end up with a few complications - those can occur in any form of surgery or long term condition - especially diabetes.
 
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