Hi,
I am quite happy with my decision for the islet cell transplant. I am not insulin independent yet, but still hope to be eventually. I am down to 6 units/day. The immunosuppressive drugs so far, have not been bad at all. It is a concern to know that my white count is so low, but I havent had any serious side effects yet, just some mouth sores which went away. My husband was sick with the flu or something like it last weekend, and I fortunately did not get it. I won’t know for sure how my new immune status will be until I have gone through the cold and flu season, but so far so good. It seems like there is a lot going on right now with islet cell transplantation. So make sure your center is having good results. They should all be the same, but they don’t seem to be.
My Doctor friend said his transplanted collegue eventually felt as ressurected. I have never died and ressurected but I can see that this could be quite a positive experience.
It is a positive experience. I had forgotten what it is like to feel this good.
Kathy, your blog is fascinating, I’m still reading it all. One question, did you receive porcine islets, or human ones? I could never put my young son through what you have and are going through, but it gives me tremendous hope for the future. Perhaps when he is older - - thanks to people like you. You are a courageous person. Happy New Year.
Hi Nina,
Thanks for your comment on my blog. I am enjoying the whole process of writing it.
I had human islet cells. The porcine islet cells are up and coming and will certainly help the short supply of human cells, but they are not ready yet. I think that U. of Minn, is hoping to start pig to human transplants later this year.
I think that by the time your son is an adult, he will have some sort of transplant, whether it be human, porcine, or stem cell. The path to the cure is getting closer and closer to reality. I am just so pleased and extremely fortunate to be one of the stepping stones. Happy New Year to you too.
Kathy - thanks for posting your blog address(to which I am off to read through after I type this…). And thank you so much for being willing to record your experiences with your transplant - I know this will help way more people than you realize. Stay well, & keep posting for the rest of us!! 
Hi Tracy,
Thanks for your input. I am enjoying the experience and the blogging.
Hi Kathy,
I was wondering if you considered a pancreatic transplant rather than an islet cell transplant. I was diagnosed with type 1, insulin dependent diabetes in March 2002. Insulin was not my friend and I had numerous, severe hypoglycemic reactions leading to clinical death and a 1 week coma in a local ICU on a vent with a brain so swollen the neurologist told my husband and mother I’d be brain damaged, more than likely. And an ICU visit for pancreatitis. I definitely qualified medically and had my transplant on June 17, 2008 at Indiana University Hospital. I feel absolutely fabulous. I sailed through the surgery and the recovery was quick and pain free. The antirejection meds are no big deal. I’ve had no side effects and have gotten no infections even when my husband had sinusitis and my best friend had the flu. But the best thing ever is that I no longer take insulin or other diabetes drugs! I don’t even have to check my blood sugars anymore. I see my transplant physician every six months and get labs once a month now. I hope you are able to get off insulin because life insulin-free is much better than life on insulin. Take care! Colleen Myers
Kathy,
Glad to hear your doing well post islet transplant. I am relatively new to this forum and far more interested in what’s going on cure related then better ways to manage this condition. In regard to porcine islets if you are unaware Living cell technologies is ahead of all the others with that procedure. They had a recipient off insulin for nearly 6 months and going into further trials soon. I think eventually they will get it to work but I am concerned how they will make it affordable for everyone. The only way I’d go for an islet transplant at this point is without antirejection drugs and encapsulated cells are the only method of doing that. The way I see it unless they can make it work without antidrugs the cell transplant will only be for the real brittle and not the majority diabetic population. For now enjoy the clinical benefit!
Hi Colleen,
Wow, that is quite a story. The islet cell transplant, in theory, is supposed to do the same thing as the pancreas transplant but without the major surgery. It is in an earlier stage, but hopefully, in a few years they will have it perfected. I have been off of insulin for almost 4 mos now and feel just great. I have not had any problems with the drugs or being sick either. I think we are both lucky.
thanks for your comment and good luck.
Kathy
I agree that my transplant is a stepping stone to the cure. So far for me though, the drugs have not been a problem at all. There are several centers looking at options that do not include the immunosuppressants and that will be the next generation, but I didn’t want to wait for it.
I called the Clinical Trial for Islet Transplant at University of IL at Chicago today. I need to do some more research. I hope the islet transplant will work. I am in good health but my a1c ave over the last 17 years is around 7.8 I have only been in the 6.7 range 6 times.
I was in the upper 7s too before my transplant. There is someone who blogs who had her transplant done in Chicago and has had a positive experience. Her blog is yayislets. Let me know if you have trouble finding it.
Dear Kathy,
Best wishes for a successful outcome on your graft.
Did you receive only an islet transplant or did you receive the islets at the same time or following another transplant?
How many beta cells did you receive? Did you receive cells other than beta cells? Will you be receiving additional infusions? What’s the name of the protocol that you’re on? Where did you have it done? What have you been using for immunosuppression? To what extent have you become less dependent upon exogenous insulin?
Kindest regards,
David
David
Hi David,
I received only islet cells. They never told me how many. I am on the Raptiva protocol and had the transplant at the U. of Minnesota. I am on rapamune and raptiva for immunosuppression. I have been off of insulin completely for about 4 months now.
I have had extremely good luck with this, both as far as not needing insulin and not having any problems with the immunosuppressants. It has been just wonderful.
Please feel free to ask any questions. I enjoy sharing my experiences.
Kathy
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!