Type 1: Islet cell transplant?

[catapillar]

I have complete loss of hypo awareness. This has not improved with pump or CGM. There are psychological blockers that make me very resistant to running high, so I'm currently standing no chance at regaining my awareness. I was only diagnosed coming up to 6 years ago.

My consultant has advised that I meet the criteria for islet transplant and that she would refer me to the transplant team to discuss islet cell transplant, or even a full pancreas + kidney transplant. The idea being that I would have endogenous insulin production while the transplant worked, I'd be euglycaemic for that period and so I would regain hypo awareness during the respite period and able to make a fresh start at diabetes as the transplanted cells wore out.

I know next to nothing about this.

Has anyone had an islet cell transplant? Can anyone point me in the right direction of where to start researching whether it is something I should be seriously considering?

Is it something that helped your hypo awareness? Were you able to come off insulin? How long for? Did the immunosuppressants do anything to your kidneys? How did you cope with knowing you were just going to end up diabetic again?

 

[asparagusp]

Brave girl Catapillar! No I haven't had this but I spoke in the diabetic clinic recently to a guy in his early30s who had been Type 1. He had had a pancreas and kidney transplant four years apart and was no longer diabetic. The only drugs he too was anti rejection ones and of course he still had to be careful he didn't;t become Type 2 .....

I'm looking forward to the replies here.

 

[chalup]

Just be aware that the anti-rejection drugs can be vicious with their side effects and they are for life. They also lower your resistance to EVERYTHING. I have not had a transplant but I have been on these immunosuppressant drugs for many years for severe autoimmune issues. The direct side effects included neuropathy in my hands, extremely high blood pressure (I tend to run low naturally), gum overgrowth (imagine your gums swelling and covering your teeth, it's gross), and ultimately the loss of my teeth. These were just from cyclosporin. I get cellulitis, pneumonia, ear infections, sinus infections, throat infections. Any cold is twice as bad and twice as long and usually results in one of those infections. The big thing is I can stop taking them, I had to stop the cyclosporin, if you have a transplant you can't. I am not a type 1 and can't speak to what it is like to manage insulin but I would think hard before committing to a lifetime of drugs that seem to be worse as well as knowing you will become diabetic again anyways.

 

[catapillar]

Is it a lifetime of immunosuppressants for an islet cell transplant? My understanding is they have a 2-5 year lifespan. Then they stop functioning and die/fibrose in your liver. I wonder if you have to keep taking the immunosuppressants after it stops working? Maybe I'm being over optimistic thinking no - will have to find that out too. Thank you @chalup

 

[chalup]

Is it a lifetime of immunosuppressants for an islet cell transplant? My understanding is they have a 2-5 year lifespan. Then they stop functioning and die/fibrose in your liver. I wonder if you have to keep taking the immunosuppressants after it stops working? Maybe I'm being over optimistic thinking no - will have to find that out too. Thank you @chalup

I do not know anything about the transplant itself. My experience has been with the drugs used afterwards. If it were a matter of life or death then yes, I would take the drugs. I do take them because for me it is a matter of living my life relatively normally although I cannot work or total disability in a wheelchair and constant extreme pain. I am only 48 and I have been dealing with this for over 20 years. Please research the drugs, talk to people who have to take them and make sure that the benefits outweigh the risks if you do decide to do this. Doctors tend to minimize those risks. http://www.askapatient.com/rateyourmedicine.asp will give you peoples experiences both good and bad. This is a good resource if you have a name of a specific drug. Big decision, I don't envy you having to choose. Good luck and take care of you.

 

[azure]

I don't know anything about islet cell transplants other than what I've read, but I have a relative on immuno-suppressant drugs after an organ transplant. They had no choice but to have this transplant so the side effects of the drugs are worth it for them. As mentioned above, I think you need to question more about this.

Don't answer if you don't want to, but why would you be having a kidney transplant at the same time possibly? If you have serious kidney issues and need a transplant then obviously you'd be taking the anti-rejection drugs anyway so having the islets would just be an 'add on'.

Are there any psychological or other alternatives?

I'd be making a big list of questions!

 

[tim2000s]

Hi @catapillar , Richard Lane, a former CEO of Diabetes UK was an early islet transplantee. It's worth finding his account of his experience, as while he did well for a while, obviously the autoimmune attack continued.

This is a good page that describes post organ transplant immunosuppression drugs: http://www.webmd.com/a-to-z-guides/organ-transplants-antirejection-medicines-topic-overview#1

I think, in your case, you'd have an amazing case for the Hybrid Closed Loop systems and are due commercially next year. They work effectively to practically remove lows, and if you want to reach out directly, I'd be happy to help you build an OpenAPS or Loop system that will do this already, with the currently available tools. I'd certainly look to give that a try before taking the step of a transplant. Are you up for that?

 

[Snapsy]

@catapillar I have no knowledge or experience of islet cell transplant but I do just want to give you a hug.

Since starting on my pump (51 weeks ago today!) I have had way, way fewer hypos than I used to (I would have 4-5 a day on MDI because of my fear of being high). Novorapid in higher unit divisions than the fractions I can take now was always far too sledgehammer for me, given my desperation to stay between 5 and 7* at all times.

(*my own target at the time, not a suggestion for others to follow)

I so understand the fear of being high. I'm sorry that pumping and CGM hasn't made a difference to your hypo awareness.

And I also just want to say wow to you, @tim2000s .

 

[catapillar]

I don't know anything about islet cell transplants other than what I've read, but I have a relative on immuno-suppressant drugs after an organ transplant. They had no choice but to have this transplant so the side effects of the drugs are worth it for them. As mentioned above, I think you need to question more about this.

Don't answer if you don't want to, but why would you be having a kidney transplant at the same time possibly? If you have serious kidney issues and need a transplant then obviously you'd be taking the anti-rejection drugs anyway so having the islets would just be an 'add on'.

Are there any psychological or other alternatives?

I'd be making a big list of questions!

I think it's just that a pancreas transplant is more likely to be successful if it comes with kidneys. To be honest I don't think I would consider a full transplant like that - there's a 5% mortality risk. They won't do an islet transplant unless you have good kidney function because of the risk to the kidneys from the immunosuppressants.

I've been referred for psych support and for a hypo awareness restoration course, but there's no guarantee I will get a place. And I'm constantly having to talk myself into engaging with that. I know I am difficult/resistant and a big part of me is saying don't get "fixed" by psych because they will make you run higher. Obviously that part is an idiot & is coming from the fear of the consequences of the hypers, but if takes an awful lot of will power to overcome it.

Definitely working on a list of questions before I even think about thinking about it!

 

[catapillar]

Hi @catapillar , Richard Lane, a former CEO of Diabetes UK was an early islet transplantee. It's worth finding his account of his experience, as while he did well for a while, obviously the autoimmune attack continued.

This is a good page that describes post organ transplant immunosuppression drugs: http://www.webmd.com/a-to-z-guides/organ-transplants-antirejection-medicines-topic-overview#1

I think, in your case, you'd have an amazing case for the Hybrid Closed Loop systems and are due commercially next year. They work effectively to practically remove lows, and if you want to reach out directly, I'd be happy to help you build an OpenAPS or Loop system that will do this already, with the currently available tools. I'd certainly look to give that a try before taking the step of a transplant. Are you up for that?

Thanks Tim! I'm not ignoring - I'm reading, reading...

 

[iHs]

Hopefully next year some more home trials of the AP will take place but in the meantime, I am happy using a target level of between 5mmol and 9mmol on dexcom and try to keep the green dots within those markers if I can but allow for some higher levels as well without becoming overly worried about nerve damage etc and thinking that the world is going to end....

 

[Shar67]

I have read that people who were due to get islet cell transplantation have been told that their ops had been cancelled indefinently, one was already in hospital. It appears cost v benefit is being questioned. This wasn't just one health area but across England and Wales