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Islet Cell transplants

Discussion in 'Type 1 Diabetes' started by maggiestanfield, May 28, 2017.

  1. maggiestanfield

    maggiestanfield Type 1 · Member

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    Hi, I would like to recreate a forum group within the Diabetes Discussion tab that concentrates on the experiences of those of us - still only a few hundred across the UK - who have undergone an Islet Cell Transplant. I think we can probably learn a lot from one another and perhaps also provide some useful feedback to the 7 UK centres. After 55 years of veery difficult, volatile diabetic control with blood glucose levels running anywhere between 1.2 and 30, I had an islet cell transplant just 6 weeks ago. My BG levels are generally fantastic, sitting between 4 and 7 most of the time with no hypos. The issues I'm trying to deal with are to do with the immunosuppressant drugs I must now take and associated side effects of those. I'd like to invite anyone who is either hoping for an islet transplant or has already had one to get in touch.
     
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  2. catapillar

    catapillar Type 1 · Well-Known Member

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    Hi @maggiestanfield thats really interesting. I'm glad your recovery and blood sugar is doing well. Was that your second round of islet cell transplant or the first? What issues are you experiencing from the immunosuperessants?

    I have just got myself discharged from the transplant clinic. They are still alarmingly keen for me to get on the list and the door is open should I change my mind, but having previously had a melanoma I'm just not currently sold on the risks benefits balance of an islet cell transplant at the moment. I'm just not convinced creating a honeymoon period with islet cell transplant would help me avoid hypos (the reason transplant is being offered to me is hypo unawareness and severe hypos). How are you finding adjusting you insulin dosages to account for the new endogenous insulin appearing, what kind of support are you getting with that?
     
  3. donnellysdogs

    donnellysdogs Type 1 · Master

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    Thats one thing I would dislike is the side effects of the drugs.

    Relative of mine used to arrange all transplants for Scotland and we had a number of conversations about the pro's and cons..
    the immuno tablets were the biggest talk we had..
     
  4. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
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    I have no objection to your thread being in the Diabetes Discussions area, but I wonder if you might have better visibility to those impacted or potentially impacted if your thread was in the Type 1 area?

    I'm not trying to persuade you to move it, just opening my mind. If you would like it moved, just let me know, by tagging me or sending a PM and I'll gladly do that. Otherwise, good luck in your linking up with other islet cell recipients and potential recipients.
     
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  5. Jaylee

    Jaylee Type 1 · Expert
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    Hi @maggiestanfield ,

    Wellcome to the forum!

    I'm looking forward to reading experiences about those that have "been there" regarding islet cell transplants.

    Thanks for joining us..
     
  6. maggiestanfield

    maggiestanfield Type 1 · Member

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    Well, that's an interesting dilemma and I can entirely understand your anxieties. I have found, I guess, a bit of a reluctance to talking about the downsides honestly. All the same, I am delighted and thrilled to be where I am now. I have so far just had the one transplant on 6 April in Edinburgh, so I'm less than two months in. I have been virtually insulin-free since 10 days after the procedure. I am still, very occasionally, taking an extra one or 1.5 iu Novorapid by syringe if I feel I've gone a little too high, though I'm learning that it generally corrects itself, without any intervention, without a couple of hours. I was on a pump and taking a daily average of around 23 iu in a mix of basal and bolus doses.

    Of course there are no guarantees in any of this. Will the transplanted cells continue on to work at this level or will they start to tail off? Will I then need to go back to the pump or have a second transplant? I don't know and neither to the specialists. This is not a route to certainty!

    For me, the most important aspect is that I have stopped having totally unpredictable hypos that I was completely unaware of for the most part. I don't give a darn if I need to do an odd additional top up of insulin. The crucial thing is that I get rid of that total instability which is so life-limiting and stressful. Will that stay the case? Is it just a honeymoon? All I can say is that the cells are working very well - getting a high quality donor organ with lots of healthy cells in it is important - and I hope they continue to do so. It's a bit like life itself - you decide whether you are prepared to take risk and go for something that could dramatically improve your quality of life or you stay with the familiar scenario.

    The drugs? When you read through the potential side-effects, it's terrifying! There is inevitably going to be some fiddling around with both doses and drugs for a time. The worst aspect so far has been nausea/vomiting and a violent skin reaction to one of the anti-virals. Both of those issues are being addressed by changes in drugs.

    Looking forward to more thoughts and ideas from anywhere at all! I went onto the waiting list while living in Edinburgh - which I did for about 20 years - but in fact had the procedure done a few months after I moved home to Ireland.
     
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  7. maggiestanfield

    maggiestanfield Type 1 · Member

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    Hi, if you think it'd be a good idea to relist this thread under Type 1, please feel free to do so. I bow to your much greater knowledge! Maggie
     
  8. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, maggie, I'm Edinburgh born and bred, hope you enjoyed your time in our fair city!

    It's actually sunny here today, not always the case, as I'm sure you're aware....
     
  9. Jaylee

    Jaylee Type 1 · Expert
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    Well. I don't know about "greater knowledge" I feel we're all here to share our perspective . ;)
    But I do agree with @AndBreathe that this topic might benefit a move to the T1 section to help maximise potential...
    It's an exciting subject!

    I'll move it for you now. :)
     
  10. maggiestanfield

    maggiestanfield Type 1 · Member

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    I love, still love, Edinburgh and had a great sense of belonging during all my years there. I think it's probably my favourite city in the world - except, perhaps, Kiev! I'm back quite a bit, partly to go to the RIE and partly to see my son who lives midway between Edinburgh and Glasgow.
     
  11. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Cheers, glad you enjoyed it, we're a cosmopolitan bunch!

    I'm going to take the liberty of tagging @TopoGigi and @clareb1970 as they contributed a lot to this recent post:
    http://www.diabetes.co.uk/forum/threads/cured-of-type-1.115657/

    It's about kidney/pancreas transplants so not exactly the same thing, but near enough, and there's a lot of stuff about the immunosuppresant side of things.
     
  12. TopoGigi

    TopoGigi Type 1 · Well-Known Member

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    Hi anything you'd like to know about immunosuppressants then I'm happy to share as I've now been taking them for over 20 years.
     
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  13. angela17

    angela17 Type 1 · Newbie

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    I had my islet cell transplant 3years ago and not needed insulin since .But due to medication to stop rejection and left me on Metformin to help the cells I now have stage4 kidney failure.......
     
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