Hi, I'd like to invite people with Type 1 diabetes who have had - or might like to have - an islet transplant to talk about their experience. I've had Type 1 for 58 years and had a transplant 4 years ago. I had lost any cognisance of a hypo and a skin condition (Scleroderma) made my insulin pump unsafe because i couldn't tell when it lodged in a piece of hard, thick skin from when it couldn't disperse properly. My experience has been fantastic and I haven't needed any insulin in those 4 years. Just now, my BG levels are showing a tendency to rise a bit high, though they fall again and HBA1C comes in around 38-42. It may be that I'll need to re-start some insulin. I'm talking to my Consultants about this. That'll be a bit disappointing but no one ever promised I'd be off insulin forever!
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Islet Transplant
- Thread starter MagS21
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Hi @MagS21 and welcome 🙂
That is great to read that your islet cell transplant has been so successful for you. Did you regain hypo awareness or is it not a issue as you have a pancreas regulating your glucose efficiently and hypos stop? Should you need to start using insulin again can you have a second islet transplant? Were you given an idea of how long the islets should work for? Sorry lots of questions!
My consultant suggested I should be referred for consideration at Oxford about 10 years back as I've lost hypo awareness and was having a frightening time along with multiple complications. I didn't go through with the referral as my consultant got funding for cgm for me and for other reasons I decided I wouldn't go down that route at that time. I do think whether it was the right thing to do as living without hypo awareness scares me.
Good to hear you have had a fantastic result, I hope things remain as stable as possible for you ongoing.
That is great to read that your islet cell transplant has been so successful for you. Did you regain hypo awareness or is it not a issue as you have a pancreas regulating your glucose efficiently and hypos stop? Should you need to start using insulin again can you have a second islet transplant? Were you given an idea of how long the islets should work for? Sorry lots of questions!
My consultant suggested I should be referred for consideration at Oxford about 10 years back as I've lost hypo awareness and was having a frightening time along with multiple complications. I didn't go through with the referral as my consultant got funding for cgm for me and for other reasons I decided I wouldn't go down that route at that time. I do think whether it was the right thing to do as living without hypo awareness scares me.
Good to hear you have had a fantastic result, I hope things remain as stable as possible for you ongoing.
trophywench
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- Type 1
Richard Lane used to write about his Islet Cell transplant in Balance years since. The transplants worked great for 4 or 5 years but gradually lost their effectiveness. I haven't seen any reports at all in recent years though - no idea whether its normal for them to wear off, of what.
rebrascora
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We had a new member recently who had had a full pancreas and kidney transplant and that had gone well and I think he was about 15 years down the line and still not needing insulin. That's the only similar case I have read of on the forum.
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By far the most wonderful, and most important, success is just not having had any hypos for 4 years! Since I had the first Covid-19 vaccination (haven't had the second one yet), my BGs have started to run higher. Very high in the first week, then settling down a bit. Tends to be in the morning. In the afternoon, BG drops back to a comfortable level again. This may mean I need to start doing very small amounts of insulin during the morning but I did try that once, when I hit 20 (in old money!) and did 2 units. I crashed to 4.1 in an hour and that's too fast, so it's very difficult to know at the moment. If I do regular 1-2 units, will the islets then stop working? Would I be able to get a second transplant? No. Only circumstances in which that might be considered would be if i became fully insulin dependent again. Would I regain hypo awareness? Possibly. I don't know how long you have had diabetes? Most, with more than 15 or so years, will have lost a good deal of hypo awareness. But no one really knows yet the likely length of time a transplant will last, since management is improving all the time, but I was never promised a lifetime!
Entirely different to an Islet transplant though, and with this full transplant the person won't lose the capacity to produce insulin. Islet transplant - often called a graft - involves no surgery. Tissue typing etc all essential but the donor islet cells are simply injected into the portal vein of the liver and reproduce from there. The pancreas isn't actually involved at all. Hence, I'm technically still Type 1 diabetic but your family member will not be diabetic any longer after a full transplant - which tends to be used where there exist kidney problems alongside.
trophywench
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I don't think I've lost much of my hypo warnings - it has happened in the past from time to time, so I've just run higher for a month plus until I got em back again. Been about 20 years since I had a serious one now. Mind you if you looked at my Libre graph you wouldn't think so. TG this first Libre 2 seems a bit more reliable, but only 4 days in as yet so far too early to form any conclusion.
Gosh, 20 years since a bad hypo! But that's great news - so long as you aren't running too high of course, but it sounds as if you're fully in control. Well done! Diabetes can be incredibly fickle in how different people's bodies behave! Mine used to be described as 'brittle' while my brother, also Type 1, has always found control pretty straightforward. I suppose there's really not a 'Type 1' in the sense that we are all different. Stress rockets my BG. My friend, Jeanie, goes hypo for example.
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