Hi Kathy,
I thought about an islet cell transplant but instead I went with the pancreatic transplant after 6 years of hell as a type 1. I no longer take insulin or any other diabetes meds. I do take anti-rejection drugs but I have no side effects. I feel fabulous and will be returning to work as soon as I find a job. It’s tough because I’m a drug rep and there just aren’t any jobs out there right now. Good luck with the islet cell transpant!
Colleen
Hi Colleen,
I am glad to hear that your transplant was so successful. It sure is nice to feel good again, isn’t it?
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-project-collaborates-globally-to-find-the-cure/
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.
I never had to go to the hospital for my lows either. That was not a disqualifier for any of the screening protocols that I went through. As for the anti-rejection drugs, you just never know. I dont know if I am just lucky or have not been on them long enough to have any consequences. I do know that a high percentage of the screening test are designed to make sure that your kidneys, heart and other organs are healthy enough to withstand the possible toxicity of the drugs.