Islet transplant - anyone had one?

[LizLola]

I asked this question ten years ago, so thought I'd ask again, I'm thinking of asking about having one of these - has anyone had one, and if you have, how have you found things? Have you suffered as a result, ie complications of the drugs, etc etc?

 

[Rachox]

I don’t know of any members who’ve had an islet transplant but I think I’m right in saying @Grant_Vicat has had a pancreas transplant. I’ve tagged him so hopefully he’ll respond.

 

[Grant_Vicat]

I asked this question ten years ago, so thought I'd ask again, I'm thinking of asking about having one of these - has anyone had one, and if you have, how have you found things? Have you suffered as a result, ie complications of the drugs, etc etc?

Thanks for the tag @Rachox - hope you're keeping well!
Hi @LizLola It is true that I had a kidney/pancreas transplant @ Addenbrooke's Hospital, Cambridge 10 years ago next Sunday. So far I have not met or heard about anybody having an islet transplant. I would guess the medication would be similar. Several things occur to me:
How long have you been type 1 ?
How is your kidney function?
Have you had complications such as retinopathy , gangrene or extensive neuropathy?
Obviously if you don't wish to publish personal information, I quite understand, but feel free to PM me if you wish.
From my point of view:
Type 1 from the age of 11 months (July 1959) to 4 days before my 55th birthday.
1st noted signs of kidney disease in 1973. By 2000 very poor and given 5 years maximum before dialysis would be needed.. Avoided dialysis by 8 days by having transplant in 2013. This was due to following medical advice to the letter!
I had laser treatment to both eyes between 1979 and 1983. Nothing required since. Delerium Tremens noted by a GP in the early 1990s. Charcot Foot (in early stage) addressed in October 2013.
All this shows that in November 2011, my diabetes had become a serious problem. The team at Addenbrooke's initially were going to do a kidney transplant, but it was suggested that I would benefit from a pancreas transplant at the same time. A surreal dream! I was put on the list in March 2012. This was because I had to undergo all kinds of stringent tests before being put on the list. Even then I had to come off several times because of frequent attacks of gout and cellulitis caused by poor kidney function.
I have been an artist, organ builder and church organist for many years, and therefore rely heavily on my hands. Since being put on immuno-suppressants I have suffered from additional tremors in my hands as a result. Whilst this can cause problems (try eating jelly, threading a needle, doing up tight buttons, or using a soldering iron!) I still enjoy all these things.

It is impossible for me to advise you, but I would suggest talking to the diabetes team in Bristol if you think you are in a suitable position. I can only think that an islet transplant would be a much more straightforward job! Good luck!

 

[LizLola]

Thanks for the tag @Rachox - hope you're keeping well!
Hi @LizLola It is true that I had a kidney/pancreas transplant @ Addenbrooke's Hospital, Cambridge 10 years ago next Sunday. So far I have not met or heard about anybody having an islet transplant. I would guess the medication would be similar. Several things occur to me:
How long have you been type 1 ?
How is your kidney function?
Have you had complications such as retinopathy , gangrene or extensive neuropathy?
Obviously if you don't wish to publish personal information, I quite understand, but feel free to PM me if you wish.
From my point of view:
Type 1 from the age of 11 months (July 1959) to 4 days before my 55th birthday.
1st noted signs of kidney disease in 1973. By 2000 very poor and given 5 years maximum before dialysis would be needed.. Avoided dialysis by 8 days by having transplant in 2013. This was due to following medical advice to the letter!
I had laser treatment to both eyes between 1979 and 1983. Nothing required since. Delerium Tremens noted by a GP in the early 1990s. Charcot Foot (in early stage) addressed in October 2013.
All this shows that in November 2011, my diabetes had become a serious problem. The team at Addenbrooke's initially were going to do a kidney transplant, but it was suggested that I would benefit from a pancreas transplant at the same time. A surreal dream! I was put on the list in March 2012. This was because I had to undergo all kinds of stringent tests before being put on the list. Even then I had to come off several times because of frequent attacks of gout and cellulitis caused by poor kidney function.
I have been an artist, organ builder and church organist for many years, and therefore rely heavily on my hands. Since being put on immuno-suppressants I have suffered from additional tremors in my hands as a result. Whilst this can cause problems (try eating jelly, threading a needle, doing up tight buttons, or using a soldering iron!) I still enjoy all these things.

It is impossible for me to advise you, but I would suggest talking to the diabetes team in Bristol if you think you are in a suitable position. I can only think that an islet transplant would be a much more straightforward job! Good luck!

Hello! Thank you for your reply. It might be that I am too old - and also, since they have since discovered I have a raised chance of getting a blood clot that I would be rejected. I have protein C efficiency, which means I have had two DVTs - but now I'm on a blood thinner to stop it happening again.

We are a similar age - I became diabetic at 12. Now I'm 64.

I have none of the obvious complications - eyes are fine, kidneys same as anyone else my age, heart fine, no neuropathy etc. Genetically protected as some would say.

However, I do have a dural fistula - an abnormal connection between two or more veins and arteries in the dura (meninges) of my brain. This can be the result of diabetes or protein C. I know because I can hear my blood wooshing (PT or pulsatile tinnitus - NOT the same as ordinary tinnitus) in my ear, as this condition causes turbulence as the blood doesn't know where to go, and if it's near your ear you can hear it. Some people have this without knowing.

I was offered a transplant 10 yrs ago due to no symptoms of hypoglycaemia. At the time with fairly good control, although up and down, I refused, feeling my assistance dog and a pump with sensor would be ok. I now have the Medtronic 780 which is very good. But still get lows and highs as i am very sensitive to insulin and quite volatile in my reactions to it.

The MRI I have just had for the above condition showed mild general shrinking of the brain. This is common in diabetes and probably due to high blood sugars. I'm thinking a good possible ten years with an islet transplant would probably be best for my brain and the rest of me. The noxious effect of the meds does make me pause- but as I have possible psoriatic arthritis, for which the treatment is similar meds, i thought, heck, I may as well try it. Perhaps.

 

[Grant_Vicat]

Hello! Thank you for your reply. It might be that I am too old - and also, since they have since discovered I have a raised chance of getting a blood clot that I would be rejected. I have protein C efficiency, which means I have had two DVTs - but now I'm on a blood thinner to stop it happening again.

We are a similar age - I became diabetic at 12. Now I'm 64.

I have none of the obvious complications - eyes are fine, kidneys same as anyone else my age, heart fine, no neuropathy etc. Genetically protected as some would say.

However, I do have a dural fistula - an abnormal connection between two or more veins and arteries in the dura (meninges) of my brain. This can be the result of diabetes or protein C. I know because I can hear my blood wooshing (PT or pulsatile tinnitus - NOT the same as ordinary tinnitus) in my ear, as this condition causes turbulence as the blood doesn't know where to go, and if it's near your ear you can hear it. Some people have this without knowing.

I was offered a transplant 10 yrs ago due to no symptoms of hypoglycaemia. At the time with fairly good control, although up and down, I refused, feeling my assistance dog and a pump with sensor would be ok. I now have the Medtronic 780 which is very good. But still get lows and highs as i am very sensitive to insulin and quite volatile in my reactions to it.

The MRI I have just had for the above condition showed mild general shrinking of the brain. This is common in diabetes and probably due to high blood sugars. I'm thinking a good possible ten years with an islet transplant would probably be best for my brain and the rest of me. The noxious effect of the meds does make me pause- but as I have possible psoriatic arthritis, for which the treatment is similar meds, i thought, heck, I may as well try it. Perhaps.

I have just looked at this link, which I imagine you did some time ago! -

Islet cell transplants for Type 1 diabetes

Type 1 diabetes is caused by the destruction of insulin-producing cells in the islets of the pancreas. Islet cell transplantation involves extracting islet cells from the pancreas of a deceased donor and implanting them in the liver of someone with type 1. This minor procedure is usually done...

www.diabetes.org.uk

What is interesting is that I can see why this was offered. I wouldn't lay too much store by my reactions to medication. I go to the transplant clinic every 3 months and see people with no sign of tremors at all! Just chatting to a transplant co-ordinator would be a great place to start. Congratulations on the 52 years!

 

[LizLola]

Thank you! Yes, I was warned about tremors, what I worry about is Covid. I have not had it yet. It is a disease of blood clots - blood clots are what cause the brain, kidney, lung, heart, nervous system - all system damage, which gets worse with every infection. As does your immune response, which it also changes to its own advantage. As I don't clear clots away, basically I don't go indoors anywhere, and wear a mask if I absolutely have to be near others. A few times last year performing a the globe and another London theatre, going to two ceremonies, once last year, once this year. I worry about getting infections. I worry about the damage the drugs do to your kidneys. no point in having great kidneys if their function is destroyed by 50% at least over 5 years - which is what I was told the figures are. I guess I'm after reassurance (I understand it wouldn't necessarily mean I would be the same) that it doesn't always happen, but I am surprised there is no-one here whose had such a transplant! Maybe they consider themselves cured and don't need to go on forums...

 

[Grant_Vicat]

Thank you! Yes, I was warned about tremors, what I worry about is Covid. I have not had it yet. It is a disease of blood clots - blood clots are what cause the brain, kidney, lung, heart, nervous system - all system damage, which gets worse with every infection. As does your immune response, which it also changes to its own advantage. As I don't clear clots away, basically I don't go indoors anywhere, and wear a mask if I absolutely have to be near others. A few times last year performing a the globe and another London theatre, going to two ceremonies, once last year, once this year. I worry about getting infections. I worry about the damage the drugs do to your kidneys. no point in having great kidneys if their function is destroyed by 50% at least over 5 years - which is what I was told the figures are. I guess I'm after reassurance (I understand it wouldn't necessarily mean I would be the same) that it doesn't always happen, but I am surprised there is no-one here whose had such a transplant! Maybe they consider themselves cured and don't need to go on forums...

In my immediate family, I have my wife, our daughter Steph, her husband Neil and their daughter Amelia. Amelia and I have been the only ones not to get Covid (so far!) It has been very strange, even under strict shielding, how this has been the case. I must admit that Helen and I were seriously worried during the 1st and 2nd strains and ironically my immunisation occurred after all the others. I still don't know what to think. Before Covid I rarely had a Flu jab. On one of the rare occasions both Helen and I went down with Swine Flu at exactly the same time! I didn't have another jab until Covid. I could be called irresposible, but I haven't worn a mask for about 18 months now unless I go to a medical centre. For ages I have avoided narrow shops. My old boss used to say "Whichever decision you make is going to be the wrong one." I'm more of an optimist, but certainly wouldn't want to affect your decision. So long as you don't beat yourself up, that is all that matters!

 

[LizLola]

Some people just have natural immunity - which is brilliant! Funnily enough, my daughter caught it right at the beginning in March 2020, before the panic and before lockdown- she was coming to give a talk to our climate group, just 8 of us, it was held in a friend's house - she sat right next to me. The next day, she went down with Covid. She knew it was Covid as she had really weird symptoms called Covid toes which some people got. I didn't catch it and neither did anyone else - but of course, although catchy, it was a fraction of how catchy it is now, and the house was a passive house with an air exchange and cleaning system. She's been fine ever since, but she texted this morning to say she has it again. She was with me last Wednesday, but she thinks she caught it on Thurs at the baby cinema. I suspect at some point I will get it from grand baby or them, as it's so hard with kids. The vaccines are wearing off and numbers have gone up.

 

[EllieM]

I didn't even realise that they were doing islet transplants rather than very experimentally so am very interested to read about the topic. So not a cure but a help for hypoglycemia and brittle diabetes? Really interesting, though I can see why you wouldn't rush into it unless you had to (not keen on anti-rejection drugs unless you have to have them).

I guess one advantage over a pancreas transplant is your own pancreas gets to keep doing the other stuff that pancreases do (digestive enzymes, glucagon etc) so you still have a (mostly) working pancreas at the end of the day, even if the islets fail.
Would love to read more on the subject. Can lowish carbers eliminate the need for bolus insulin???

Thank you for starting this topic @LizLola .

 

[Antje77]

So not a cure but a help for hypoglycemia and brittle diabetes?

There was someone in a Dutch Facebook group who got an islets transplant last year. Worked very well, a cure indeed, albeit with the same side effects of needing to take anti rejection medication you have with a full pancreas transplant.
He could eat a completely standard high carb diet with his islets.
Sadly, he recently died of unrelated health issues.

 

[Jaylee]

There was someone in a Dutch Facebook group who got an islets transplant last year. Worked very well, a cure indeed, albeit with the same side effects of needing to take anti rejection medication you have with a full pancreas transplant.
He could eat a completely standard high carb diet with his islets.
Sadly, he recently died of unrelated health issues.

I used to read the “new scientist.” (30 years ago? UK publication. Anything regarding a “cure.”) phoned up regarding this breakthrough in science.
No internet for me then.. I got (when I got through.) “stonewalled.” Quite glad I did.

Oddly, I’m prone to anything going about (virus or bug wise.) but never had to date. Covid.

Are we still talking tests on mice @LizLola ?

 

[CatsFive]

I didn't even realise that they were doing islet transplants rather than very experimentally so am very interested to read about the topic. So not a cure but a help for hypoglycemia and brittle diabetes? Really interesting, though I can see why you wouldn't rush into it unless you had to (not keen on anti-rejection drugs unless you have to have them).

I guess one advantage over a pancreas transplant is your own pancreas gets to keep doing the other stuff that pancreases do (digestive enzymes, glucagon etc) so you still have a (mostly) working pancreas at the end of the day, even if the islets fail.
Would love to read more on the subject. Can lowish carbers eliminate the need for bolus insulin???

Thank you for starting this topic @LizLola .

Pancreas transplant - What happens

Find out what happens during a pancreas transplant and islet transplant.

www.nhs.uk

• A cut will be made in your tummy, from just below your breastbone to below your belly button.
• The donor pancreas is usually placed in the right side of your tummy and is connected to the blood vessels that carry blood down to your leg.
• A small portion of the donor's small intestine will be attached either to your small intestine or your bladder to allow digestive juices to drain from the donor pancreas.
• If you're having a combined pancreas and kidney transplant, the kidney will be placed low down on the left side of your tummy.
• The old pancreas will not be removed as it will continue to produce digestive juices while the donor pancreas produces insulin.

 

[LizLola]

Hello, all!

Yes, I believe they are still doing them. They are not a cure, and as I understood it at the time (this was about 8 years ago), some work better than others. Some people get good insulin amounts and become basal and bolus free for some years - as the transplant goes on, in later stages, they may need to supplement. five years was the given life at that time, although the longest surviving transplant was 16 years according to a paper I read - the date at that time was 2010. So things will have moved on, presumably. But eventually the islets degrade and cease to function. Then of course you would need more put in - and the problem with that is that you would get even more antibodies to another donor. The more antibodies you get, the more likelihood that any future donor organ will survive, and it will be come increasingly difficult to find a donor who will fit. So what if you need a donor kidney, because your kidneys fail? If you are younger, this is definitely a consideration.

The other thing that put me off was the drugs. I was warned that the drugs are as bad as those given for chemotherapy in their toxicity to the body. I joined a few transplant Facebook groups and just observed all the problems they had. They are myriad. Strange infections you will never have heard of - requiring hospitalisation and v strong antibiotic drips. Ordinary infections you will have heard of requiring the same. Your skin becoming covered in warts - no way to get rid of them. Rampant yeast infections. Cancer - of all sorts, as your immune system which mops up mutant cells usually is depressed. Particularly skin cancers. You have to stay out of the sun. You will be very prone to Covid. Basically - yes, you swap one lot of problems for another lot of, well, really quite a lot worse problems. I decided that rather like false teeth not being a replacement for your own teeth but being a replacement for nothing at all, a transplant was only to be approached if there was no other way of sustaining life - ie kidney failure. I wondered, reading Antje77's post above, just what 'unrelated' issues the Dutch transplantee died of.

It might be that islet cell transplants have dropped out of favour because they likely to have been offered to people like me - healthy otherwise, just no warning symptoms of hypos, and of course the brilliant new pumps such as the Tandem T Slim (I tried that, did not like it at all) and the 780 (brilliant pump, much better) may have filled the gap in keeping people safe from night-time hypos in particular.

What I don't like is that even with the 780 unless I eat a very restricted diet I still go high, and at the minute I have a brain problem (pulsatile tinnitus, more common in type 1 and with people who have protein C, caused by the joining of veins to a artery in my head). This has caused a general shrinking of my brain - which could be a precursor to dementia. But it could also be caused by high blood sugars. So I am looking at ways to try and curb any high blood sugars at all, and i'm very aware that I am not strict enough to do it by diet.

Trying to decide which is worse!

 

[Antje77]

I wondered, reading Antje77's post above, just what 'unrelated' issues the Dutch transplantee died of.

I don't know, he didn't share this in the Facebook group.
He was an active member of that group before his transplant who had a lot of difficulties trying to keep his BG anywhere near safe levels. After his transplant he shared some Libre graphs and hba1c's, which were both normal, I think his last year was a very happy year because of this.

For myself, like you, I wouldn't want to swap my diabetes for a lifetime on heavy drugs even if a transplant was guaranteed to keep working. But then, I don't really have a hard time with my diabetes, and I can understand how for some the pro's and cons would add up completely differently.

 

[LizLola]

It's tricky isn't it! My consultant said she'd like me to give my body five years 'off' the diabetes - when the insulin islets stop working you can stop the drugs. I have no idea whether this would work or not - when I asked a nurse (thinking they would see the problems on the wards) if they knew of people in Bristol who had had it done and were happy, I was told there were lots and all were very happy and they hardly saw them!

 

[sucuth]

I am very happy about the outcome of my Islet Transplants and in my lifetime I have had four (3 in the US as part of a research prog) and waiting for a fifth. They have saved my life, so for me (and we are all different) they have changed my life, in a positive way.

Sure it isn't an easy form of treatment, but I don't think much is when it helps to save your life. Living with any illness isn't really easy, either, is it?

Yes, the drugs prescribed for 6 months post transplant are pretty heavy duty, but you aren't left on an Island and told to get on with it. There is a huge support team around you with wonderful medical staff who see you regularly and tweak meds and check on all aspects of your general health, including mental health. It can be tiresome, irritating, painful, hard work and a v long haul. But, for me it has been worth it.

I have had Type 1 Diabetes for 57 years now and between 2007 and 2022 had about 9-10 years off insulin. No warning signs of low blood sugars whatsoever and them dropping from 6 -0i n less than 5-10 mins. Being able to have what i thought was a complex conversation all through that time until I couldn't and I dropped.

A life saver for me then and yes as someone suggested, a rest from diabetes for a while. Phew! I needed it and it gave time for my body to heal. I was having trouble finding sites to inject or to put my insulin pump. Ironically one of the best things for me after transplants ( as well as less hypos) is that I don't have to think about food all the time and get some time off carrying shed loads of it around with me and constantly have to think about when i am next 'having' to eat and what.

Islet cell transplants are no longer part of a medical trial now in the the UK. They are actually a form of treatment for those eligible. The criteria is quite strict, but the info is out there. I am not allowed to add any links to my post yet, but will later if any one wanst any info.

All the best
Riggs (S)