Help! Total Pancreatectomy with Auto-Islet Transplant, Need Information, Experiences.

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LittleLab4CF

Super Moderator
I am at wit's end. I've dealt with wicked chronic pancreatic pain and equally wicked amounts of narcotics to control it for forty years. This latest round of the medical industry's latest narcotic knee jerk is closing off access and I just don't have any fight left. It's maybe time to rip this baby out if it can end this idiotic medical politics* SNAFU!


I need some stories of those who have gone through this procedure including details of the timing from the wait for the procedure, the timeline from going in through recovery and such. Also the long term results from pain remaining, if any, and the degree of help from the islet transplant.

I need resources and any recommendations of centers, doctors and such. Where was it done? A link or Name, Location and Phone or Website would be greatly appreciated. Nobody I've talked to, like my GI doctor and endocrinologist even know the procedure existed and assured me my insurance would never approve it. This may have been a retort for being caught not knowing everything. It did raise the question about paying for the procedure. Any information on how and who paid for the procedure would be wonderful. my insurance is UHC.

I actually heard of this procedure on this site. I am 64 without any diabetes in my near future and live in the Denver Colorado area. I can travel so I can go to any center.

Thanks in advance,

LL
 
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Imogene

Administrator
Hi LittleLab,
I am thinking about you. I reached out to Printer through email...hoping he could remember a discussion that was on here. I haven't had much luck with the search.
I will be working with our new CEO on the Search this summer.

http://www.pancreatitiscenter.org/success.aspx
is a link with some patient stories...and a center you may consider. I looked for a group on FB and they brought me to a bing search.
Hopefully, people will chime in from here.

Wishing you a pain free day!
Imogene
 
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politicaljules

New member
Hi LL,

I have a friend's husband who had a kidney/pancreas transplant and he is doing amazingly well. He had diabetes and that was the reason he got the transplant, but I have often wondered if pancreas transplant would help someone with cystic fibrosis. I do not know all the specifics of his transplant, but I do know it was done in Houston, and he no longer has to take insulin for his diabetes. I will copy and paste to send him your questions above, only if it is ok with you, and send you back a copy and paste of his response. Or I can ask if he'd like to exchange emails with you if that would be better.
 
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LittleLab4CF

Super Moderator
Thanks so much for all the help. The link to another thread of pancreatitis and pancreatectomy is just what I am looking for.

Every bit helps,

LL
 
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Imogene

Administrator
Keep us informed....we are thinking of you...even some prayers have been whispered....we want to know what you decide....and how you go forward.
Lots are watching, hoping for the best and wishing you well!

Salt and Light,
Jeanne
 
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