Islet Transpant!!!

[gman2004]

Ok well, ive been a diabetic since 1 week after summer started, June 2003 :(, its been going all good, honeymood peirod still going strong, ive takin it pretty well, and my last 3 a1c tests have been better then most non diabetics.

But here is my convern, i cant take it, i cant stand it, i want to get rid of it, I know this is what goes threw most people's minds when the are first diagnosed. But as lame as this sounds, i cant stand going to a lady's hosue for dinner, and having to take a shot, i cant stand always carrying a snack with me, always needing a packback, i cant stand being sick, and having not just to worry about throwing up, and getting sleep, but i gotta worry about keeping food down, making sure my blood sugar level is perfect, and if its not, there is always the fear of going to tehhostpital because of a minor flu. i HATe having to wake up early, i hate not being able to go out with my buddy's, drink some beer's, and have a good time.

I overall cant stand it

Ive heard of this procedure, and how successful it is. There must be a way in which i can get this done. Money is not a concern, as both my parents are willing to do what it takes. So i guess, after all that jibber jabber, my question is, how do i go about getting this surgery? and getting this done?

[JDRF-Team-jhg]

Hello gman2004 . . . thank you for coming to the Forum and posting this question.  There is much talk about islet cell transplantation these days and while the procedure has worked beatifully for a good number of people it is far from being touted as the cure for diabetic patients.  The prospect of taking immuno-suppressants for the rest of one's life to hopefully ward off rejection is enough to turn off many patients.  The possibility of very real side effects such as mouth ulcers will turn off others.  The following site has several very good articles about islet cell transplantation which I thought you might find interesting.

http://www.insulin-free.org/articisl.htm

here are a couple of excerpts:

"The Juvenile Diabetes Research Foundation has defined islet transplantation as its No. 1 goal because "it offers the best potential cure path," said Nancy Drake, vice president of the Minnesota company.
However, Katrina Crist, executive director of the Juvenile Diabetes Research Foundation's Center for Islet Transplantation at Harvard University in Boston, said many obstacles remain before islet transplantation hits the medical market."

and

"Islet transplants are not seen as cure for diabetes, Robertson said, but as a means of preventing complications in those having great difficulty in controlling their glucose levels. Patients now receiving the experimental transplants already have complications, and researchers hope the procedure will help prevent further damage. "

Realize that each transplant center has different criteria for being accepted into their program. I know, initially at least, most were requiring that potential candidates must have the complications mentioned above to be considered for the programs.  That may have changed with some.  Check out the various centers websites as I feel sure their qualifications are probably spelled out pretty clearly.

I hope this is what you were looking for . . . research this carefully to be sure this is the best option for you.  Best of luck!

[gman2004]

oh, and to add one more thing

i would like to know the pro's and con's of this procedure.

I know u have to take anti rejection drugs for the rest of your life, but what are the side effects to those?

[nurse12hr]

Here is a site that lists centers doing islet cell transplantation research and trials:

http://www.isletservice.org/centers.htm

and some more info:

http://www.isletservice.org/articles/ixtx.htm

[JDRF Volunteer WAK]

Hi- I am a volunteer and a mom of a diabetic child. I went just last weekend to hear a recipient of the islet transplant talk. First of all, by no ways is it a cure for diabetes. The person who had it done 3 years ago, and several months ago she had to start taking lantus 2 times a day.   There is certain criterion that must be met in order to be eligible. One of the most important ones is dangerous highs and lows.  Also the procedure is not done on any one younger than 25.  It is called the Edmonton protocol and is still very experimental.  Also you need to take anti-rejection drugs for the rest of your life.

The websites that some else posted will help give you more information.

[TonyAlmeida]

Yeah - I know how you feel.  Diabetes doesn't suck the life out of you - it's the carb counting, injections, blood testing that does.  It's the over-complicated life that Diabetes leaves you with that wears you down.

I wouldn't hold my breath for the Islet Transplants - I've talked to others who have attempted it and right now, it kind of makes the entire Diabetes situation actually worse for people.  Most have to go back to Lantus and then back to Multiple Daily Injections.  It just doesn't really work right now.  And definitely one of those solutions which is probably not any better than the problem itself.

I would highly suggest you get an Insulin Pump as quickly as possible though.  Animas, MiniMed - doesn't really matter.  There are people who will tell you to wait until your honeymoon period is over - forget them.  Like I told the Medical Student from Hong Kong below .... my endo told me that at least with a pump, it may be possible to give your Pancreas a break and not burn out the remaining insulin producing cells you still have.  It'll mean lower basal doses of insulin and give you more freedom that you'll never get with just needle injections.  And yes, I have a beer with my friends and the pump lets me do that.

Pumps have their own issues - but they do give you more freedom.  Yes - you still have to count Carbs and you can't eat everything you used to - but even with Islet Transplants, you'll still be Carb counting and on a diabetic diet just like now. Your activities will be even more constrained.  And anti-rejection drugs open up a whole new set of problems - you won't be having any beers with your friends once you start down that route.

Just my 2 bits.

[jcarneyjr]

Islet cell transplants are not yet a cure for the masses but they are very exciting and hold a lot of promise.  I know personally one of the women who got the transplants and she would not go back to life with diabetes as she knew it before with freqent seizures and total hypoglycemic unawareness.  She has now been off insulin for two years and is feeling great.  The immunosuppressive drugs have not bothered her and the only side effects she has had are some mouth sores and occasional swollen ankles.

There are still two major hurdles to overcome, one being a supply of islet cells (write your representatives and tell them to support embryonic stem cell research!), and the other is overcoming the immune tolerance issues.  There is research taking place by JDRF now in both areas and hopefully will yield results as quickly as possible.  In the meanhwile we need to keep our kids (or yourself) healthy by whatever means works best for you until the cure is here.  I know many people who swear by the pump and others who didn't have luck with it and went back to injections.  The key is good control however you can best acheive it.

[Darth Math]

I feel your frustration friend.  There are far worse conditions than Diabetes but that doesn't make it suck any less.  

That being said, I don't mean to be rude but get in line.  I'm 27 and this May will mark the 20th aniversery of my first shot.  There are many many people who have been dealing with this for even longer (I think my cousin's had it for ~35 years).  Islet cells are in short supply.  As far as I know we can only get them from organ donors at present.  IMO someone who has only had to deal with this monster for 9 months is the last person who should get them (regardless of how much money your family has).

You do realize that even if you are a total slacker at keeping control of your sugar levels that complications won't start to set in for 20 or 30 years right?  My advice?  Keep them as controlled as you can without letting them control your life.  Have a few beers with your friends when you want to.  Have the occaisional bowl of ice cream (just get a big shot of humalog beforehand :).

The best thing you can do in my opinion is vote for people who support stem cell research.

- Best of luck to you

[sueki]

An alternative that you might consider is getting an insulin pump. I know you just plain don't want the disease... neither do I. I've had it for 15 years. The pump made a big difference in my life. It's a complex tool but allows you to sleep in , in the morning. You can skip meals, you don't have to feed your insulin. You can take an injection discretely in public, etc. It keeps a record of your injections, and it usually allows people to have a more even glucose level instead of a lot of highs and lows. There is a web site www.insulin-pumpers.org where you can check out the various pumps and correspond with others who use the pump.