"Cured" of type 1?

clareb1970 said:

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

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I've been told by my consultant a pancreas transplant carries a 25% mortality risk. Not sure where she got that from but it certainly sounds high enough for me to discount pancreas transplant.

Looks like 5 year mortality post pancreas transplant is about 8-13% - http://www.odt.nhs.uk/pdf/organ_specific_report_pancreas_2014.pdf#page32 which still seems pretty high.

My understanding is that risks from immunosuppressants include kidney failure (which I guess if your getting a kidney transplant is a risk your willing to run), fertility problems, increases various cancer risks. I guess I'll find out more when I see the transplant surgeon next week to discuss islet cell transplant.

Really glad that you have a positive story from the transplant. But it's not an easy option and not something that's considered unless they think you are at high risk of dying without it.

clareb1970 said:

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.

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Hi Clare
I only take the one immunosuppressant now, Prograf (Tacrolimus) started out on this plus Mycophenolate and Prednisilone, for about the first eight years then gradually weaned off Prednisilone as it can contribute to having a Type 2 diabetes and then stopped Mycophenolate due to low white cell count and various 'Herpes" related illnesses, Shingles, Bells Palsy, also had CMV which a lot of patients get post transplant. I too am well looked after by the Transplant team at Imperial College for which I am truly grateful, nothing is too much trouble, visit every 6-8 weeks. Life is good at the moment. Good to hear from a fellow transplant recipient.

catapillar said:

I've been told by my consultant a pancreas transplant carries a 25% mortality risk. Not sure where she got that from but it certainly sounds high enough for me to discount pancreas transplant.

Looks like 5 year mortality post pancreas transplant is about 8-13% - http://www.odt.nhs.uk/pdf/organ_specific_report_pancreas_2014.pdf#page32 which still seems pretty high.

My understanding is that risks from immunosuppressants include kidney failure (which I guess if your getting a kidney transplant is a risk your willing to run), fertility problems, increases various cancer risks. I guess I'll find out more when I see the transplant surgeon next week to discuss islet cell transplant.

Really glad that you have a positive story from the transplant. But it's not an easy option and not something that's considered unless they think you are at high risk of dying without it.

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I know someone that's had two islet cell transplants and they only lasted 2 years.
Catapillar perhaps you could talk to some other people that have experienced either a Pancreas or Islet cell transplant.
There are FB groups available to join to share experiences with which are quite informative, Waiting For A Kidney/pancreas Transplant (as spelt)

That man has had a very rough life :/
I guess its technically a cure if has stopped the disease. From what i gather T1D can have insulin function halted due to an almost singular event prompting the immune system to destroy cells, and stressing the remaining cells to death over time. (which is why some of use had months of struggle before diagnosis) If this is the case then it may not reoccur later in life with the new pancreas, and perhaps the immunosuppressents given for rejection do something to further prevent this occurrence. This is of course all speculation on my part lol

I would also suspect the mortality figures are highly dependent on the hospital, doctor, and region you are located in - not all surgeons are 'the best', and not all patients react the same. I would suspect the good hospitals with rates below the national average quote those figures and the not so good ones quote the national average then exact figures lol

These are the UK Hospitals involved in Pancreas and Islet Cell transplants

Details and statistics from. www.odt.nhs.uk

Pancreas and Kidney/Pancreas
Cardiff University Hospital of Wales www.cardiffandvaleuhb.wales.nhs.uk/
Edinburgh Royal Infirmary www.nhslothian.scot.nhs.uk
London Guy's Hospital www.guysandstthomas.nhs.uk
London West London Renal and Transplant Centre www.imperial.nhs.uk
Manchester Royal Infirmary www.cmft.nhs.uk
Newcastle Freeman Hospital www.newcastle-hospitals.org.uk
Oxford Churchill Hospital www.ouh.nhs.uk

Islet Cells
Edinburgh Royal Infirmary www.nhslothian.scot.nhs.uk
London King's College Hospital www.kch.nhs.uk
London The Royal Free Hospital www.royalfree.org.uk
Manchester Royal Infirmary www.cmft.nhs.uk
Newcastle Freeman Hospital www.newcastle-hospitals.org.uk
Oxford Churchill Hospital

TopoGigi said:

Hi Clare
I only take the one immunosuppressant now, Prograf (Tacrolimus) started out on this plus Mycophenolate and Prednisilone, for about the first eight years then gradually weaned off Prednisilone as it can contribute to having a Type 2 diabetes and then stopped Mycophenolate due to low white cell count and various 'Herpes" related illnesses, Shingles, Bells Palsy, also had CMV which a lot of patients get post transplant. I too am well looked after by the Transplant team at Imperial College for which I am truly grateful, nothing is too much trouble, visit every 6-8 weeks. Life is good at the moment. Good to hear from a fellow transplant recipient.

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Hi TopoGigi, thanks for your message. I take Neoral, Cellcept (Mycophenolate) and Prednisolone and seem to manage fine with them. The main issue for me (and one that I must stress had nothing to do with my transplant as such) was that I too contracted CMV from the donor. As you will know, many people will have had this at some point in their lives without realising, as it feels just like a bad dose of flu, but like you I had not had this virus pre transplant and knew the likelihood of me getting it was high. Five months post transplant I got it! Nobody was worried of course, it just meant having to stay in hospital to receive the IV antivirals. More of a nuisance than anything. The problem with me, however, was after going home I started to feel very strange. Extremely weak and when I went to go upstairs to the bathroom I could not understand why my feet kept hitting the stair instead of standing on top of it. Things progressed rapidly and I was worried I'd had a bad reaction to the medication I had been given. Nobody could u detests daughter what was wrong until my own GP came to my home and tested my knee and elbow reflexes (non existant) and a few strength tests (no strength). She knew immediately that I had got Guillain Barre Syndrome (GBS). This is an autoimmune neurological condition and I had got it because of the CMV. My antibodies, instead of attacking the virus had instead turned on my nerve cells, eati g away at the myelin sheath covering each cell. This meant that my brain was sending signals to my muscles to move, but the message was not getting there. I eventually ended up in hospital, unable to move and not knowing if it would travel to my chest muscles which control my breathing. Altogether I was in hospital for over 4 months.

What I absolutely need to stress here is that CMV does not automatically cause GBS. I was just very unlucky. Many people who get GBS do eventually recover - everyone is different. I was flippantly told by a rather ignorant Dr (who did not know my full case) that I would not walk again. I was devastated and my own consultant had to start to rebuild my confidence from scratch (I made a complaint about the other dr). From that point I was not going to let anyone tell me what I could or couldn't do - how could they know what my future was?!

I left hospital unable to move my legs but thanks to two important people who never let me give up I can now move my legs properly and am able to walk across the room. Things according to the mean Dr I was never going to achieve. I have a cracking wheelchair that I use for work or if I go out, but round the house I just hold onto furniture for support.

This unforeseen rare occurrence was nobodies fault - no blame fell at anyone's door. My transplant consultant was devastated and expressed his sincerest apologies, which made me respect him a thousand times over. We both knew he had nothing to apologise for but his sinceretity really touched me.

Sorry, I have waffled on here, but it wasn't the sort of thing you could cover in a few lines. The important thing to take from this is that I never regret having the transplant.

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.

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Paul, I haven't had a transplant, but I take immunosuppressants for Crohns disease. I'm not terribly paranoid about illnesses and don't live like a hermit, although the main disease vector is likely to be my reception-age child anyway. I do have the luxury of taking 'breaks' if necessary though. I imagine you don't with a transplant.

catapillar said:

I've been told by my consultant a pancreas transplant carries a 25% mortality risk. Not sure where she got that from but it certainly sounds high enough for me to discount pancreas transplant.

Looks like 5 year mortality post pancreas transplant is about 8-13% - http://www.odt.nhs.uk/pdf/organ_specific_report_pancreas_2014.pdf#page32 which still seems pretty high.

My understanding is that risks from immunosuppressants include kidney failure (which I guess if your getting a kidney transplant is a risk your willing to run), fertility problems, increases various cancer risks. I guess I'll find out more when I see the transplant surgeon next week to discuss islet cell transplant.

Really glad that you have a positive story from the transplant. But it's not an easy option and not something that's considered unless they think you are at high risk of dying without it.

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Hi there, I cannot believe that information - 25% mortality rate!! Nobody would have pancreas or kidney transplants if the odds were that bad. There would be bodies everywhere (my hospital does 4 or 5 a week, that's nearly two patients dying every week). Then your quote of 5 years post transplant with figures being 8 - 13%... these stats sound more like failure of the transplanted organ rather than the patient dying. When I went for my assessment before going on the waiting list, the consultant had to tell you every possible thing that can go wrong and the likelihood of it happening. It's just how it goes in any form of surgery, but these are risks that are explained to you in context. Me ending up in the mortuary was never high on the list of things that may go wrong - and you would think that at "25% mortality rate" it would be right at the top in dirty great bold CAPITALS.
At the end of the day, no form of surgery is without risk - it's about putting any possible risk in perspective. It also may be different stats depending on the hospital doing the transplant. With regard to Immunos, I take a combination of three, which are finely tuned so I take just enough to stop rejection - no more. Only one of these can have a toxic effect on the kidney I'd taken in high doses for a long period of time. There are new drugs being developed at an increasing rate. Fertility problems were never mentioned to me and I met lots of new mums at the transplant clinic over the years. The slight increase risk of cancer is true, as you would expect from having a suppressed immune system. The advice is, no sunbathing (use sunblock), report any new moles to your dr (you get seen by a dermatologist every 6 months anyway). Ladies used to get sent for cervical smear ever year but this has now gone back to 3 yearly (same for all women). Plus usual no smoking etc.
I don't want to dismiss everything you have been told as I don't know in what context or how the information was communicated. I just feel that you have perhaps been given a lot of worrying information without it being put into perspective.

clareb1970 said:

Hi there, I cannot believe that information - 25% mortality rate!! Nobody would have pancreas or kidney transplants if the odds were that bad. There would be bodies everywhere (my hospital does 4 or 5 a week, that's nearly two patients dying every week). Then your quote of 5 years post transplant with figures being 8 - 13%... these stats sound more like failure of the transplanted organ rather than the patient dying. When I went for my assessment before going on the waiting list, the consultant had to tell you every possible thing that can go wrong and the likelihood of it happening. It's just how it goes in any form of surgery, but these are risks that are explained to you in context. Me ending up in the mortuary was never high on the list of things that may go wrong - and you would think that at "25% mortality rate" it would be right at the top in dirty great bold CAPITALS.
At the end of the day, no form of surgery is without risk - it's about putting any possible risk in perspective. It also may be different stats depending on the hospital doing the transplant. With regard to Immunos, I take a combination of three, which are finely tuned so I take just enough to stop rejection - no more. Only one of these can have a toxic effect on the kidney I'd taken in high doses for a long period of time. There are new drugs being developed at an increasing rate. Fertility problems were never mentioned to me and I met lots of new mums at the transplant clinic over the years. The slight increase risk of cancer is true, as you would expect from having a suppressed immune system. The advice is, no sunbathing (use sunblock), report any new moles to your dr (you get seen by a dermatologist every 6 months anyway). Ladies used to get sent for cervical smear ever year but this has now gone back to 3 yearly (same for all women). Plus usual no smoking etc.
I don't want to dismiss everything you have been told as I don't know in what context or how the information was communicated. I just feel that you have perhaps been given a lot of worrying information without it being put into perspective.

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Thank, I think from what I was told this week it's more like 2%mortality risk, then 8% risk for serious complications from a pancreas transplant. So still a lot more that I would need to consider about risk and benefit of a transplant.

Diamattic said:

That man has had a very rough life :/
I guess its technically a cure if has stopped the disease. From what i gather T1D can have insulin function halted due to an almost singular event prompting the immune system to destroy cells, and stressing the remaining cells to death over time. (which is why some of use had months of struggle before diagnosis) If this is the case then it may not reoccur later in life with the new pancreas, and perhaps the immunosuppressents given for rejection do something to further prevent this occurrence. This is of course all speculation on my part lol

I would also suspect the mortality figures are highly dependent on the hospital, doctor, and region you are located in - not all surgeons are 'the best', and not all patients react the same. I would suspect the good hospitals with rates below the national average quote those figures and the not so good ones quote the national average then exact figures lol

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I agree Diamattic. When looking at tables of statistics i think we all need to bear in mind that when quoting patient mortality following transplant, it does not mean that these patients died because of the transplant itself. If you read the written details it states that the figures cover all patient deaths, whether it be due to old age, road accident, a stroke etc. The transplant itself could have been working perfectly. So I think these figures can be misleading, especially if there is a high population of pension aged patients in that catchment area.
Another, extremely important factor that is not taken into account in these studies is patient compliance. You would not believe how many post transplant patients become sloppy about taking their immunosuppressant drugs. Some believe if they've taken them for years they are no longer at risk of rejection. Then there are some who get a diarrhoea and vomiting bug, have it for a week but never think to inform the hospital immediately. Then they wonder why their results have doubled the next time they're at clinic. This behaviour is no fault of the surgeon or hospital. I guess some people never fully appreciate what a mammoth, unparalleled gift a donor organ is.