I was very fortunate to receive an islet cell transplant last month. I have been working on writing a blog about the experience and would like to share it with anyone who is interested in learning more about this option.
Here is the address http://kathy-mynewislets.blogspot.com

I am doing well and the islets are beginning to work.

I welcome any questions or comments,

Kathy

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Kathy, please keep us posted. Very interested. Will the islets eventually work to the point where you don't need to use insulin? Will the islets have to be replaced in five years or so? Yes, it is the wave of the future. Have you seen LCT's research (by Dr. Bob Elliott) on encapsulated islet cell transplantation without the need for immunosuppressants? Still in the research stage. I will check out your blog as well.
Hi Jan,
After the transplant, it took about 2 months to become free of insulin. It was a gradual and exciting decrease. There is no way of knowing how long they will last. I am at 6 months now (today actually), and am doing well. I have heard of the encapsulation direction of the research and it does make sense. There is also the hope of transplanting some of the donor's bone marrow at the time of the islet transplant which also would make immunosuppressants not necessary. I seem to be tolerating the drugs well, so it has not been a big issue with me.

thanks for your interest,

Kathy
Kathy...congrats on your happy story and thanks for sharing it. Had you been suffering from any diabetes related complications and if so have you noticed an improvement? Best wishes for your continued good health.
Hi Elaine,
The only complication I have is some minor retinopathy. I have not been back to the opthamologist yet to see if it is any better. As poor as my blood sugar control was before the transplant, I have to believe that the complications were probably in my future. Even if my transplant doesn't last forever, it should at least buy some time for my organs.

thanks for the thoughts,

Kathy
We're all about buying time for our organs!
Kathy

I am going to see a new Endo that was part of the Chicago Project. What questions should I ask her? I am still interested in the study.

thanks
Hi John,

I think that the most important question is how the most recently transplanted patients are doing. There was a good article in Diabetes Health about the Chicago Project that says that they are having some good results now. When I asked the doctors at U. of Minn. this question before my transplant, they said that it has a lot to do with how the islets are processed. They all follow the same protocol, but I guess there is a talent to getting the most islet cells out of a pancreas. Here is the address of the article in case you have not already seen it. http://www.diabeteshealth.com/read/2009/01/23/6060/chicago-diabetes...
My local Endo was also concerned with how having the transplants would effect my chances of getting a kidney if I would need one sometime in the future. I asked that question too, and the answer was that there were steps that could be taken to help neutralize the extra antibodies.

Good luck and let me know what you find out and decide.

Kathy
Kathy
Did you have undetected lows? How did they define undetected lows? I have had times where I was 44 and didn't and other times I do know that I am low. Or I didn't feel low until I hit below 50

Thanks

John
Hi John,
Yes, I did have lows that I did not feel. At some point, I lost the shaking and sweating feelings and went straight to disorientation. Like you, sometimes that happened in the 30s and sometimes in the 60s. I wore a continuous monitor for most of my last 2 years, and that helped a lot.

During the screening, they asked questions about that, and I was afraid that I would not qualify because I never had to be given a glycogen injection. But since hypoglycemic unawareness has a pretty subjective definition, I think they just take your work that you have it to some degree. I also filled out log sheets that had questions about the recorded lows and if you had feelings of hypoglycemia when they occurred.
Hi!!! Thanks for the info.....I was just wondering how much would it cost me for the transplant? I told my doctor about that before I got pregnant 2 years ago but then he doesn't have any idea about having it in the philippines. Can you give more details about how much it cost? and the procedures so I can rely it to my doctor. Thanks so much!!!!
marivic
Hi Mairvic,
The cost of the surgery and medications is all paid for by the clinical trial. The patient is responsible for the costs of traveling to the center for all of the checkups, which can be many. There are many different centers and many different protocols for the procedure. Check out the Collaborative Islet Cell Registry to learn more about this at: http://www.citregistry.org/ I also have a few other links on my blog that tell more about the procedure. http://kathy-mynewislets.blogspot.com.

Good luck, and let me know if you have any other questions,

Kathy
I talked to a Dr that screen patients for the islet transplant. She said that I would not qualify. I have not gone to the hospital for my lows. She said the anti-rejection drugs are too hard on the body.

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