Help! Total Pancreatectomy with Auto-Islet transplant, Need Information, experiences.

[LittleLab4CF]

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 in and I just don't have any fight left. It's maybe time to rip this baby out if it can end this idiotic insurance 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

 

[Imogene]

http://www.bidmc.org/Research/Depar...search/Faculty/StevenD,-d-,FreedmanMDPhD.aspx
have you seen this doctor? He is the one printer raves about.

Are you close to Denver and national Jewish?

 

[LittleLab4CF]

http://www.bidmc.org/Research/Depar...search/Faculty/StevenD,-d-,FreedmanMDPhD.aspx
have you seen this doctor? He is the one printer raves about.

Are you close to Denver and national Jewish?

Hi Imogene,

I go to NJH and Dr. Nick is my CF specialist. I asked him about the procedure and got a shrug in response. Adult diagnosed CFers and incoming adults are in for a surprise if NJH is any example. The areas of specialties is uneven and at NJH they are lost below the diaphragm.

I have a call into Dr. Freedman, I was/am a patient in 2000-2002 and that's a possibility. The research I've done highlighted Cincinnati, Chicago and Minneapolis Minnesota.

This is a huge decision for me. Most of my doctors, those I have considerable respect for, eshew things like denervations. This is why I'm after the range of inputs this site offers. If you can walk me through the steps to post on the main page, I'd really appreciate it.

Thanks in advance,

LL

 

[Imogene]

Hi LL,
i know you posted on the main forum. I wonder how you are progressing, if you made any decisions? Are following a path?.
know I'm thinking/praying.

j

 

[enniob]

Hi LL,

I wish you lots of strength and courage through this!

Have you read this publication that covers the procedure in detail? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799613/ …also take note of the references as they can lead you to interesting places. If you need full text access to some restricted articles, I have the ability to get them in most cases (I am a scientist too).

Other resources I could find where promotional for the different hospitals:
http://www.uofmmedicalcenter.org/Specialties/PancreatectomyandIsletAutoTransplant/index.htm
http://www.hopkinsmedicine.org/tran...nscripts/auto_islet/auto_islet_animation.html

But I am sure you came across most of this with your knowledge. A simple Google search will reveal tones of resources: https://www.google.com/search?q=Total+Pancreatectomy+with+Auto-Islet+transplant

Let me know if I can help in any way. Feel free to PM me. Hope we can meet soon. Really admire your level of knowledge on this disease. Hope you are well!

Cheers
Chris

 

[Guest]

LittleLab4CF I am sorry you are suffering so much. Have you found any resources yet and know how you will proceed. I find all your info you provide me so informative and helpful. TY. I have a friend, quite some time ago he had a double kidney transplant (I am almost certain) and a pancreais transplant at the same time. I think he said he was the first this was every done on. He is a musician, but became ill. I know he had kidney failure and went blind. Hes site came back. Has done well for quite some time. He know is in kidney failure. Not a CFer but he has gone through this. I think it was Stanford? I will ask him some info if you like. Let me know.

 

[Guest]

I just read some info on what they do with the links here. Boy not anything I recall my friend had done. also not on insulin. Again I will be more then happy to speak with him, where he went and Drs and so forth.