Islet cell recipient

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

Kathy, thanks for sharing your experiences! I will check out your blog!!

Did they do a bone marrow transplant also or are you on an anti rejection drug or the like?
Keep us posted…I think it’s the wave of the future…Best wishes

I did not have a bone marrow transplant with this. It is not part of the protocol that I am in, but I think there are a few places that are working on this. I am taking 2 different immunosuppressant drugs. So far other than having a low wbc count, which I cannot really feel, I have had no side effects. I might be just starting to get mouth ulcers, but they are minimal.

I think it is the wave of the future too and feel so fortunate to be a part of it. I think it is an important stepping stone to the real cure. For my part, it has already helped me immensely. I am finally in control.

Hi Kathy,
Thanks for sharing this with us. I will really be interested in learning how things are going. My best to you.

http://dsc.discovery.com/news/2008/08/27/cell-mouse-diabetes.html
This is an important new development in diabetes treatment and suggests a cure is only a few years away

danny w

I just read your whole blog in one sitting. Absolutely fabulous. It sounds like you are doing so well!

Thanks for your comment. I am doing well. Yesterday I only used 8 units of insulin. My insulin usage continues to decrease and I am feeling well.

I agree. I feel that participating in a clinical trial, even with its own inherent risks, is a shortcut to a cure. I have hope too, that my experience will help those who follow me. So far it seems to be a win/win situation.

Are you having an identity crisis? It seems like diabetes is already such a huge thing to me, and I am only newly diagnosed! Also, I am type 2, which doesn’t seem nearly as bad as type 1!

Don’t kid yourself Misty, Type 2 is just as bad. You have to watch what you eat just like we do. And I know many Type 2’s, they all slowly move towards insulin usage. Which is more reason to watch your numbers and diet more closely.

That is interesting that you would ask that. It does feel different. I still consider myself to be diabetic. I still am on insulin and have to worry about the lows, but something is definitely different and I assume will become even more so. Being a brittle diabetic was such a big part of my life, that I won’t feel exactly like myself, at least for awhile. But, once I do feel normal again, that will be a good thing. I already feel that a tremendous weight has been lifted. I can now control my blood sugar levels for the first time in many years. It is no longer a big losing battle.

Have you thought of having some counselling sessions? I know that when people lose a lot of weight they often need counselling to re-shape their self-image. I would imagine it is similar for someone who suddenly doesn’t have a chronic illness anymore.

I know, I’m not kidding myself. But I do not get the dramatic highs and lows. I am very newly diagnosed and still figuring out the dietary guidelines, but I am getting there. This may sound weird, but thanks for saying it’s as bad. I keep hearing a lot “Oh, you’re only type 2” and I guess it almost makes it feel less important.

It’s not less important!! Don’t start feeling like it’s nothing. You have to monitor your health so it doesn’t lead to complications. Then you can live long and healthy 8)

I’m sure those people that say that are not diabetic. They are the same people that think the more insulin you take the “worse” you are. Educate yourself and do what is right for you and your body.

Well I have seen it with some type 1’s, even a little bit on here, but mostly other places. It’s only type 2, you just need to lose weight, etc. Mostly on here I have seen people who are NOT like that, only every once in a while I get a hint of it.

We know we need to lose the weight. All this extra insulin makes it really hard. :frowning: I wish there was a way I could take out some of my insulin and donate it to a t1!

I dont think that will be necessary. It has been such a positive experience that I just think that I can coast into my new identity.

That’s so awesome! I can see this surgery becoming extremely viable especially if they figure out how to make islet cells from other cells, like in Danny’s article. Maybe not for us, but for our kids. Maybe from the placental cord blood. Or maybe they could take some of my islets (since I still have them) and save them for when they can teach them to replicate.

Hi I am so glad I came across your Discussion on the net. I first enquiried about an islet transplant back in 2001 but was unsuccessful. I have had type 1 diabeties for 28 years now and have just been asked to try the islet transplant again. I am excited about it but also very scared, if the transplant does not work I will end up where I started, but if it does work I am worried about the anti-rejection medication which to me is more of a problem than the diabeties. What is your thought on this I also have a beautiful daughter who I would like to see grow up and have a mother there with her.

Great to hear I have just read you blog, I am very interest in you progress as I have been asked to take part in the islet transplant at Westmead Hospital Sydney AUSTRALIA. Although like you I have to do the test to see if I am suitable to participate in the program. I am not on the pump although I hope that would be an option if I do not qualify for the transplant. I go for my first lot of tests on the 13th of October 2008 the tests go for two days then I see the Doc for the end results. Excited but scared at the same time. As I have watched my father have the first Pancreas and Kidney transplant at Westmead unfortunately this only lasted a couple of years until my dad pasted away. I am only 38yrs so that is not old plus I have a wonderful husband who has supported me for the last 20years with my diabetes and I have a 10.5 yr old daughter who I hope to be around for the next 40 years or so.