Islet Cell Transplants and Pancreatectomy

Hi:
I know a bunch of you have seen or have had surgery by Dr. David Sutherland at the University of Minnesota for islet cell transplantation/pancreatectomy.

Since I was going to MN for Thanksgiving (like I could eat it-- ha ha!) I called and they were able to fit me in for a consult the morning after I get there. I know some of you who have been on me to at least talk with him will be glad to hear this much!

But… his office wrote back and said that there is NO insurance that will cover the actual surgery. So, while my Medicare/Medigap should cover the consult, if it seemed worth it to do the surgery, the big question would be how to cover it.

Of those of you who have had/considered this surgery, did you find any resources for paying for it? I guess this is why they’ve kept it labeled “experimental,” because then they don’t have to pay for it to be done-- even if it would help.

It seems that if you have the diabetes, it can help stop it, but if you don’t have it yet (like me), you’re likely to get it-- but along with very likely pain relief from all the CP pain.

Any suggestions??

Thanks and hugs to all,

Lisa

HI Lisa,

Are you seriously considering the Islet cell therapy? Have you done enough research and are you sure that you want to do this? I’m asking this because I was advised not to try that treatment because it is experimental and also lasts for a short term. There are not many cases who are living very happily after getting this therapy.

When I was in India seen by my GI doctor who treated me when I was in India started very famous ASIAN INSTITUTE OF GASTROENTEROLOGY , in Hyderabad the place where our families live. He is a guest lecturer in one of the famous Universities here and he attends most of the conferences in US and around the world and has done lot of research and work with GI problems. People are coming from different countries and when I was there was an American patient came for some procedure. This is happening for a long time because people who don’t have Medical Insurances are preferring to go to those hospitals and get the procedures done because they are affordable there. He is a very nice doctor who works around the clock until 2am every night. He doesn’t take money from the very poor patients and treats them giving expensive treatments just like the people who pay.

When we discussed what happened in these 9 yrs and after listening how am I doing, he was happy with my progress and said, maybe after few yrs this may stop totally who knows. Then I brought the topic about Islet Cell Therapy because I have very little bit of Pancreas left.

He said, if you are not diabetic yet means your Pancreas is functioning normally, of course it is giving you trouble too. According to recent studies in Britain, the Islet Cell Therapy is not working that well for the patients who had it. People who had it done had 1 or 2 yrs relief and then the pain comes back, then they have to manage both Type 1 diabetes and also Chronic Pain. And he suggested that if you have little bit Pancreas it is easy and better than not having any Pancreas so don’t even think about touching that little bit Pancreas.

I usually encourage people to get the procedures done because everyone is different, for some people it might work completely and for some people it may work partially. About the Islet Cell Therapy whoever is considering please do the complete research and if possible follow someone who had this procedure and see how they are doing. It’s a very complicated and delicate issue and because they are not having many successful cases they are still calling it’s experimental’.

I expressed my opinion and my intention is not to upset or disappoint you. I want everyone to be cautious before they have something which is a major procedure.

Hope you understand.

Lots of love and hugs.
Durga.

Hi, Durga–

Thanks so very much for your input and advice. I’m definitely not rushing into anything at all. I am seriously considering a celiac block done by EUS for the pain,and I know it won’t last long, but I’ve been reassured by several different docs I’ve consulted with that this shouldn’t make anything worse and might help at least for a while. I don’t have the strength emotionally or physically to risk anything else going wrong. I’m exhausted and don’t get why I’m back in flares so badly when it had seemed it was finally a bit better. The pain has been very out of control and now I can barely eat at all-- and I know it will get worse when I do. I’m mostly making sure I stay hydrated since any food seems to set it off lately.

Regarding Dr. Sutherland, I was only planning on a consult at this point, not a surgery. For now I still have my entire pancreas with a chronically inflamed tail and a recent MRCP that may or may not have actually shown small calcifications-- but no diabetes yet (although being thirsty a lot and peeing way more than I’m drinking has me a bit concerned. My blood sugars have still been normal and even low at times)-- so I’m not looking for more trouble.

I never mind any thoughts or opinions or advice. That’s what’s so great about this site and this wonderful group of others going through this together. I just feel I have to get a bunch of opinions from consults and see what else might be out there that may help-- I refuse to give up hope or the plan that this WILL get better at some point, somehow. I’m a dreamer, but I never stop believing… no matter what.

I’m very worried about you, too-- and especially your weight being so low. I know you’re doing a lot to bring it back up and that you’ve had this for so long that you’re a pro at what to do. Just keep taking care of yourself and know you’re loved and cared about deeply.

Many hugs and a good night,

Lisa

My daughter, Juliette had 4 celiac plexis blocks, and twice they did help the pain for a while, but it is also a painful procedure, so do expect to be sore for a few days. I hope the blocks help you,
Jill