Pancreas Transplant

[Dragonflye]

Hello everyone,

Its been a LONG time since I last logged on. I have posted before about my severe nighttime hypo's (no warning and them lasting 12hrs+ - on average i usually have my insulin pump suspended from 10 to 15hours when I have these).

Well after having my baby that caused so many complications with my diabetes, like they do, I went back to work... Since then I've had to have a few days off due to these hypo's and ultimately they are not impressed with me (we work on stages and im almost at the end before they considering waving bye to me) so they asked for information from my specialist...

I saw him last week and while going through the questions we discussed my history of these hypo's and he commented we may need to look into pancreas transplant. To be honest the idea has freaked me out a little but after sleeping on it I figured it wouldnt do any harm to try looking into this and I figured I would start my research and come back here and see if anyone has any experience of this?

 

[Susan1974]

I am currently suspended from the transplant list for a kidney and pancreas. I'm suspended as I've recently had surgery and can't be on the list until I heal. I have to say once the surgeon explained what a pancreas transplant entails I am thinking twice about it.


On the one hand I think I might as well go for it because I have little quality of life as it is but on the other hand I think if I had just a kidney transplant once I had it my blood sugars might be easier to control anyway. I have therefore just done the DAFNE course in an effort to get a tighter grip on my control and am still in two minds about whether I want to go for it. I have to say the thought of getting rid of diabetes is so tempting. It all depends on how well you can control your diabetes. Clearly your doctor thinks it's worthwhile. You should ask to speak to the surgeon who would perform the op to get a better insight and weigh up your options. I have heard of a few people in my renal Unit who have had the op and it has gone well and they are doing brilliantly! It's a tough decision and all you can do is arm yourself with as much info and feedback as possible and weigh up the pros and cons. Good luck with everything!!

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[donnellysdogs]

It doesnt get rid of diabetes permanently. Most people as I understand it may have about 3 years of freedom from it. It does however get rid of hypo's immediately..

It takes s huge, huge amount of islet cells to do this op.


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[Dragonflye]

My doc said they usually do a pancreas transplant at the same time as a kidney, but they do pancreas on its own (which is what id be having) and he said it could be 5-10 years diabetes free, the main point for his consideration for me was apparently once your on insulin again then severe hypos im currently having should be massively reduced, if not eliminated... strangely enough, having had diabetes since I was 4, Im not really fussed about the diabetes free part. Islet transplant was also mentioned but as you said, it takes a huge amount...

The main confusing bit for me is the benefits versus the bad... yeah diabetes free for a short time and future better control ( i hate saying "better control" as my overall control is pretty good - just the random, unexplained, severe hypos) but coming at the cost of having to take antirejection drugs for the rest of my life and the increased risks of cancer etc from taking these drugs...

 

[Susan1974]

It's a difficult decision. When I first heard of people getting pancreas transplants I thought why wouldn't you? Surely it's a no braIner! Until you hear about the complications and risks in Surgery etc. Suddenly it's not such an easy decision to make!
I find my hypos usually follow additional exercise doing vigorous housework warm weather and most definitely hormonal!!

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[AlexMBrennan]

It doesnt get rid of diabetes permanently. Most people as I understand it may have about 3 years of freedom from it. It does however get rid of hypo's immediately..

It takes s huge, huge amount of islet cells to do this op.


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I think you are confusing an islet cell transplant (islet cells are harvested and infused via liver portal vein) with a pancreas transplant (pancreas is removed, and a donor pancreas is implanted - frequently done at the same time as a kidney transplant). In both cases you'll need to be taking immunosuppressants for life

 

[Julie1471]

I was offered a cell transplant by my local hosp, but I asked to try a pump instead as I looked into a transplant. But you need loads of cells ok it is done via day surgery (so not to bad). But as AlexMBrennan said your on immunosuppressants and DVLA still class you as diabetic as far as driving is concerned. My new DSN at Kings College said they work for about 3years, then you go back on to insulin. I am actually very happy on a pump it has stopped my hypos were I was having no warnings at all. I now have my hypo awareness back and it has made a massive change to my overall control and my hb1ac, as well.

 

[tomvonc]

I was thinking that the amount of anti rejection meds you would need would make shooting insulin seem like a walk in the park. Just my 2 groats worth ;-)

 

[paul-1976]

I was thinking that the amount of anti rejection meds you would need would make shooting insulin seem like a walk in the park. Just my 2 groats worth ;-)

It's 'Horses for courses' obviously but I'd agree with you that insulin would be a safer option IMO considering the radical surgery and anti rejection drugs required that can have serious risks to a persons immune system and potentially,life.
Organ transplants are amazing and have saved many lives when there is no other choice but they're not a walk in the park or an easy fix for diabetes.

 

[tomvonc]

Ironically, I know someone who's diabetes was triggered by anti-rejection steroids (Or something like that)!

 

[SandyDee]

I had the islet cell transplant suggested to me at my last hospital visit because despite being on the pump I still have no hypo awareness. The main advantage of this over the pancreas transplant is that its not a major op and can be done under local anaesthetic. It's a really big move and much as the hypos affect my life now I'm still not sure. On facebook I found some sites from people who've had a transplant because I wanted to know the advantages of day to day life (as opposed to the medical advantages). Despite the side effects of the immunosuppressants they all said they would never want to go back to how they were. The main disadvantage they mentioned was the increased chance of skin cancer, which is no small thing, it increases your chances of cancer in general but especially skin cancer. I don't know about where you live, but is there any chance you could get CGMS which can alarm when you go low, if you're not that bothered by the insulin.
Sorry I've waffled on so much.

 

[Dragonflye]

I use the cgm almost 100% of the time, i was the 2nd person in my area to have funding granted for it most of the time it is waking me up to alert me i am hypo, however the hypo's are still lasting in excess of 10hours and even with that, i still have siezures at some point during these hypos i am so lucky my husband is as good as he is. Without the cgm id be having seizures on most of the hypos (and we were talking at least 3 a month)

 

[Julie1471]

God Dragnoflye, 3 a month I was having 1 a week, hubby would wake to find me in full sweats and starting to fit. Took myself of the road that was over 2 years ago. Now have gotten back on an even keel

 

[donnellysdogs]

Dragon fly what cgm are you using? Are you actually checking against a blood meter as well when it alarms low?especially during the night?


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[Dragonflye]

im using medtronic enlite and yes, everytime it alarms i am checking my sugar... on average (when i dont hypo) i will test 6+ times so i know i am definately hypo and not the sensor alarming for no reason the dr has no question whether i am hypo or not, its the severity and unpredictable frequency of the hypo's to why this has been brought up

 

[iHs]

Would you go so hypo if you were to bg test every 2.5hrs? Also, can you not alter the basal rate delivery and make yr bg levels a bit higher?

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[Dragonflye]

OK i test regular, including testing during the night (even with the cgm) i test when it alarms and we have tried pretty much everything, including running sugars high over a period of time, Ive gone for a month with sugars being constant. Last time i did it and for the whole month at around 12 but then during this time random nights with 8hr + long hypos with pump suspended for the whole time and then following night it would be back to 12... If the consultant and I hadnt have worked through all of this then the transplant would not have been mentioned. I've kept diaries with about everything in it over periods of up to 6 months (and yes it was a huge effor keeping track of everything) to see if we could find what was causing it all.

My diabetes has been like this all my life (i was diagnosed in 1988 so a few years), tried different insulins, different regimes, different diets. I have been lucky that I have never been on my own (parents and then hubby) as I would not be able to live on my own.

Even with a human science background, transplant is still a scary thing for me and I was just wondering if anyone had any experiences of this or more knowledge

 

[SandyDee]

If you are seriously considering a transplant I would ask about the Islet Cell Transplant as it doesn't carry the risk of surgery. I know they do it in London, Oxford and Edinburgh, but I don't know where else. I may be thinking of how I cope with surgery (not good). Whatever you decide I hope all goes well.
Forgot to say you can have the ICT transplant again and again so although it only lasts for 3-5 years that doesn't mean you're back where you started.

 

[Dragonflye]

My consultant did mention the islet cell transplant was a possibility but it was less commonly carried out than the pancreas but didnt spend 1/2 the amount of time discussing that as he did the pancreas. although i didnt know that about the islet cell can be redone, that is very good to know and something i can consider investigating further

 

[Julie1471]

Yes, you can have more than 1 cell transplant, it just comes down to when they have all the cells that you need. Kings College Hospital, do it under day surgery. You could even end up under the care of Professor Amiel .