Has anyone had an islet or pancreas transplant?

[LizLola]

I'm thinking of having one of these. I'd very much like to talk to someone who has had one. Thanks.

 

[TopoGigi]

Can I ask why you are thinking about having an Islet or Pancreas

 

[LizLola]

Can I ask why you are thinking about having an Islet or Pancreas

I have very brittle diabetes. I have an alert dog and CGM, which catches most, but I still go up and down, am rarely where I should be, and am beginning, after 40 years, to get some problems. (Eyes.) I'm presuming as my control is so poor, that I have some genetic protection.

I've been offered islet or pancreas. Just want to speak to someone about what it's like on the anti-rejection drugs.

 

[TopoGigi]

I had a Pancreas only Transplant in 1997, so it's coming up to 18 years without taking insulin. It has not been an easy journey but I have been told by my Renal Consultant that I would not be here today if I hadn't had the Transplant. Yes you have to take Immunosuppressants for as long as you have a transplanted organ or Islet cells but that's a given. One of the Consultants I saw before transplant said to me that I would be swapping one lot of problems for another and that has stuck with me but saying that a transplant is not always straightforward and still may present problems. I am kept a close eye on in that I attend a Transplant clinic every two months or sooner if things are not okay with blood test results, etc; I still have many Diabetic complications, unfortunately these have not gone away and some have deteriorated since transplant. So I can't advise or recommend, its a big big decision that you have to make and only you can do, read up as much as you can on this,
I don't think there are many Transplant recipients on here or they are staying stum. As far as Islet Transplants are concerned I don't know much about their success and logivity, but it is less invasive.
Let me know if you need anymore info.

 

[LizLola]

Helo Topogigi, thank you for your reply.

When you say some complications have got worse, why is that?

I know that the drugs can be harmful to the kidneys - is it those that have deteriorated?

My Consultant seems to favour the whole kit and caboodle as it is more likely to make me insulin injection free, as the drugs are the same for both ops. but the islet op is so much simpler.

I worry about the 3% death rate for the actual op, and the further percentage of big complications.

Do you mind saying just what problems you have had, or would you rather not on forum?

 

[Robinredbreast]

I had a Pancreas only Transplant in 1997, so it's coming up to 18 years without taking insulin. It has not been an easy journey but I have been told by my Renal Consultant that I would not be here today if I hadn't had the Transplant. Yes you have to take Immunosuppressants for as long as you have a transplanted organ or Islet cells but that's a given. One of the Consultants I saw before transplant said to me that I would be swapping one lot of problems for another and that has stuck with me but saying that a transplant is not always straightforward and still may present problems. I am kept a close eye on in that I attend a Transplant clinic every two months or sooner if things are not okay with blood test results, etc; I still have many Diabetic complications, unfortunately these have not gone away and some have deteriorated since transplant. So I can't advise or recommend, its a big big decision that you have to make and only you can do, read up as much as you can on this,
I don't think there are many Transplant recipients on here or they are staying stum. As far as Islet Transplants are concerned I don't know much about their success and logivity, but it is less invasive.
Let me know if you need anymore info.

A good and honest opinion from you Topogigi, How do you cope with day to day activities and life in general? Also what is your medical condition classed as now?

With best wishes RRB

 

[LizLola]

Also - did you have lots of problems before the transplant? I only have a small amount of retinopathy, well, they said some changes had been seen, but this is the first time after a retinal photo.

Apart from this, i think i'm ok... are you saying that whatever I have will continue to get worse (I have read your other posts) due to:

"Diabetic Metabolic memory syndrome"


Does this apply to every person who has had a transplant or only some?

 

[LizLola]

"Modifications of these epigenetic marks not only allow cells and organisms to quickly respond to changing environmental stimuli but also confer the ability of the cell to “memorize” these encounters. As such, these processes have gained much attention as potential molecular mechanisms underlying metabolic memory and chronic diabetic complications."

(Taken from
Metabolic Memory and Chronic Diabetes Complications: Potential Role for Epigenetic Mechanisms
Robert V. Intine1,2,3 and Michael P. Sarras, Jr2)

So something that is helpful in our cells usually is actually pitted against us if we are diabetic. Great.

Does it always happen though?

 

[TopoGigi]

I have met quite a few people over the years that have had a Pancreas or Pancreas and Kidney Transplant and everybody's experience, outcome has been different so for some people it's 'a walk in the park' and they have very few problems but everybody that goes through this process is very closely monitored.
I had Type 1 Diabetes for 21 years before my transplant and quite well with the exception having gastric surgery for severe Gastroparesis and being brittle experiencing high sugars on and off for years, felt fine so thought nothing of it, little did I know that this would eventually catch up with now. Unbeknown to me did I imagine that this would hit me about 10 years after Transplant but it did, the damage had already been done, I suppose this is where the 'Metabolic Memory' theory comes from.
Retinopathy has progressed, Stage 4 CKD, Cardiac disease and Autonomic Neuropathy which has also affected my heart. Although there are many people who have felt marvellous after transplant and things do improve so it's a bit of luck of the draw or destiny or something like that. Don't forget I am nearly 18 years since transplant most of which has been positive. With regards to the Immunosuppression drugs all drugs have side effects, and also the medical profession now use these type of drugs in Rheumatoid Arthritis and Crohn's disease.
I am a very positive person and look on the bright side of life, too much worrying is not good for you anyway, only wish I was 25 again!

Robin redbreast I still class myself as Type 1 Diabetic because I still have many of the classic Diabetic complications and i still see my Diabetic Consultant on a six month basis.

 

[LizLola]

Thank you so much for this information.

I'm vacillating between the islet and the whole transplant, and thinking I might just go for the islet option. I think my Dr favours the whole transplant because it has more chance of there being good insulin independence, and I have to have one in the next 3 years or I will be too old.

I'm certainly going to try extra hard to get sugars down slowly so that there isn't too much of a drop after my transplant to avoid the problem of worsening of any problems. If that works!

My highs are for about 5% of the time, for about 85% I'm travelling between high and low but between 4 and 10, and for 10% of the time I'm below 4. I have no idea how this fares but my long-term readings always come in quite good at about 7-8ish.

I have searched and searched the internet before thinking of here to find someone whose experience isn't 'brilliant' as I know there must be quite a few people for whom there have been problems from the statistics, so I am extremely grateful for your input.