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Islet Treatment

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...sorry forgot to ask, I thought I read somewhere that family members can donate and are ideal, but needed 3 separate donors? Or did I dream all that???

You're right. You need the Islets of Langerhans from three pancreta. Interestingly I'll be doing my nursing training in Oxford. Maybe I'll strike lucky with placements and get to go there.
 
You're right. You need the Islets of Langerhans from three pancreta. Interestingly I'll be doing my nursing training in Oxford. Maybe I'll strike lucky with placements and get to go there.

LOL...maybe you could assist with the research and the transplants. You could then do all of ours!!!!!😛

Good Luck with your placements and thanks for confirming I wasn't going loopy...:D
 
Hi, Just wondered if anyone knew about DIABECEll and Living Cell Technologies on the islet treatment front. They seem to be the cutting edge in the encapsulation research and xenotransplantation in New Zealand/Australia.
Apparently now licenced in Russia and just signed deal in Japan. Would post links but not good at that (too technical for me) but if you google Diabecell 2011 some interesting reading. This is all new to me as my son has not been diagnosed very long and although this sounds hopeful not saying it is a cure but possibly a big move forward in the management of the condition. Interesting thread.

Joann
 
Islet Cells

Hi again,

Theres is so much research being done on Tranplanting Islet cells it is quite hard to keep track. This is what I know from personal experience - doctors and 'the net'.
The number of of organs needed for Islet Cell transplants -to lead to insulin independence, depends on a lot of factors; weight, your general 'other' health, condition of the cells when transplanted, how 'they' react when tranplanted and how many are extracted successfuly from the donor.

How long 'they' last again is dependant on a lot of things. How well the immunosuppressants work and how your body responds to them.
I received enough cells during my first tranplant to become insulin independant. However, there were complications and a lot of them were lost. Non the less, I was a lot better and reduced my insulin by two thirds. I also had a lot less hypos for a year or two.
Insulin independence is great, but the main aim for me, was to stop having such bad hypos.
At the moment the protocol for the type of islet cell transplant I have had can mean up to 3 tranplants. So when these start to fail as they inevitably will, I can have one more.

Re. living donor tranplants, the only one I have heard about is a mother who' gave' her daughter part of her actual pancreas, rather than the cells, in Japan. I haven't had much luck finding out what happened there, but will try.

Can add more. Just not too good at doing it all in one go!

ps. I'm a she 🙂
.
 
Thanks wriggler, this is very interesting. 🙂 I can imagine that the relief from severe hypos must be the real benefit when compared to the freedom from injections, or even a pump. Did they try you on a pump before the transplant?
 
Sorry, Northerner (forgot my manners) thanks for the welcome and good wishes. It's really appreciated.

It's about time I shared some of this experience. I'm only just now ready to talk about it. In fact talking about it would be a hella of a lot easier than writing about it!

And yes, it is a bit weird to not be doing injections. It's great my body is havinga rest from that as I was running out of places to put my pump. I've always had lumpy local reaction to injections and pump sites......luck of the draw I suppose.

As well as the relief from really bad hypos, one of the best things for me is not HAVING to eat sometimes.

Re. the posts about side effects. Everyone is so different in how they react to drugs, like we all are different re. our diabetes and how it affects us. The immunosuppresants can have some serious side effects and they are not 'easy' on my body. That's something all of us that have had the transplants have to face. It's not just a 20 min operation and wham bam you are 'cured' like some of the reports have suggested. It's a long process of selection, waiting and continuing tests.
The doctors and researchers are working really hard to find something that works. I don't mind being a big 'lab rat' if there's a chance that it helps me now and other people later on.
 
Sorry folks, late to this thread, but just too report that I linked a news story recently that a hospital in Bristol will be carrying out islet cell transplants from September this year.

Hang on... I'll go and get the link.

http://www.thisisbristol.co.uk/news...diabetics/article-3523803-detail/article.html

I gather that islet cells are a much lower risk op that whole pancreas. Some people seem to have a better result than others. Hope it continues to go well for you Wriggler.
 
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Thanks wriggler, sorry its been a busy few days, not had a chance to catch up. The extra posts with your real life experience is fab! Sorry for the assumption in my post!!!!! Oops 😱

Will have a read of the links now peeps....
 
I actually had an appointment was professor Stephanie Amiel at kings college quite a few years ago when this was first talked about , there are lots of things to take into consideration , and also the fact that you would have to take anti rejection drugs like you have to after any sort of transplant . What with progression things will have changed a lot and in 10 years time a lot more only time will tell.
 
Islet cell transplant

Hi,
I found this discussion and would like to join in. I had an islet cell transplant in 2008 and it has made a tremendous impact on my life. I had 2 years with not using any insulin and now use about 8 units and have really good control. I feel so much better all the time. I have been blogging about my experience since the beginning. I feel that it is so important to share it because so many people have never heard of this option, even in the diabetic community. I have links on my blog to some of the best information sites, including a facebook page for islet cell transplant recipients and anyone interested in the process behind the scenes. Blog address.

The immunosuppressants can be challenging at times, but for me, so far, they are much easier to deal with than insulin ever was. I feel my future is much brighter on this path and a lot more comfortable in the present.

I enjoy sharing my experience and welcome any questions or comments.

Kathy
 
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