...

[Guest guest]

Hey ,

Well, you asked if I considered removing Jackie's pancreas with the

islet cell auto-transfer. It is on my mind a lot. I am just afraid

that with her being so young it may not last but so many years.

Being a brittle diabetic is a serious thing. People go blind, lose

their limbs, their life. I don't know what to do. Her pain is being

made comfortable with 4 lortab a day and Ultram. I am thinking if

she could stay not getting in that extreme daily pain then maybe she

has time to get older and make her own decision with some age and

wisdom on her side, at least a few more years. I don't know then

sometimes I feel like going ahead with the surgery. Back and forth

in the brain. Jackie is as undecided as me...but I am the mom and

she would totally go any way I wanted cuz she trusts me. I did email

Dr. Sutherland and his email will be at the bottom of the posts. It

is such a hard decision...how long has people lived with their islets

in the portal vein, maybe I should ask that question. I guess

Shirley would know the answer, when I get time I will post the

question to her. So as you can see my mind isn't to good. If I wait

too long she could be too worse, I'm in the process of asking my

family members and trying to get a little peace with it...as you can

tell the peace isn't here with me yet. I guess you can tell what I

am going thru. Thanks for your support cuz I do need it and I do

want your opinions. If anyone on this board has any kind of ideas

that could help my child, I am more than willing to listen. Just at

the moment, I don't know what to do. Thanks again, talk to ya soon,

Here is the note from Dr. Sutherland,

Hi Ms Mann,

From your description of Jackies symptoms, she is a candidate for

pancreataectomy and islet autotransplant. She cannot have a long

term plan of narotic analgesics and she cannot live in pain, so she

has to have a treatment that will releive the pain. Nerve blocks

someitmes work. There are surgical procedures (duct draiinage) that

someitmes relieve the pain(called Peustow operation), but when we do

a total pancreatectomy after a failed Peustow we usually relieve the

pain but rarely get enough islets to prevent diabetes. Thus, I think

the best option is total pancreatecomty and islet autotransplantation-

-it nearly always relieves the pain and we prevent diabetes more than

half the time. Jackie would have to accept diabetes as a possibility

for relief of pain, but living in pain on narcotics is much worse

than diabetes.

I would be happy to see Jaackie in consultation or for surgery. I

am also happy to talk to her doctor if he wishes to call and to

reveiw med records. You can arrange a consult by calling Ann Marie

Papas in my office at , and she can send you a packet

and help with insurance issues, etc. I can also talk to you.

I hope we can help Jackie,

Sincerely,

Sutherland, M.D., Ph.D

Dept Surgery

U Minnesota