- Messages
- 66
- Type of diabetes
- Type 1
- Treatment type
- Pump
Thanks for the tag @Rachox - hope you're keeping well!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?
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.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!
I have just looked at this link, which I imagine you did some time ago! -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.
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!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...
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.So not a cure but a help for hypoglycemia and brittle diabetes?
I used to read the “new scientist.” (30 years ago? UK publication. Anything regarding a “cure.”) phoned up regarding this breakthrough in science.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 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 .
I don't know, he didn't share this in the Facebook group.I wondered, reading Antje77's post above, just what 'unrelated' issues the Dutch transplantee died of.