Re: Partial pancretectomy to Nichole

[Guest guest]

> Hi Everyone,

>

>

> This is and I am 16 years old. I had a partial

pancretectomy

> and I am now considering a full removal with the islet cell

> transplant. Has anyone done this before and had enough islet

> cells? Has your pain been relieved? Would you do it again? If

I

> didn't have enough islet cells, would I become a brittle diabetic

or

> any kind of diabetic? Would a transplant be a better option?

Please

> kindly reply as my parents and I are trying to make a decision.

> This is the hardest decision because the first surgery failed.

> Thank-you,

>

Dear Nichole,

Unfortunately I don't have any experience with complete

pancreas removal and auto islet transplantation. All I know

about these procedures is based on what some of our

members who have undergone the surgery have told us about. I

know it has brought hope to many and we have some members

here with great success stories.

I just wanted to welcome you to our group, and explain to you that

we understand what a difficult decision making process you

must be going through now. You've already had the one

procedure and had your hopes let down when that one didn't

work as well for you as you'd planned. It's scary now to consider

even more surgery, but I understand your needs to remove

yourself from all the pain and suffering that you've already had to

experience so much of your young life. It just doesn't seem fair

that this should happen to you.

I did want to share my experience of diabetes with you, because I

think that concerns you a lot in regard to the outcome of the

TP-ICT. I developed diabetes after I went through diabetic

ketoacidosis shock one year ago. My pancreas burned out and

the diabetes was a result. I'm a type 1 diabetic, meaning that I

have to inject insulin several times a day in order to live. The

doctors said that my diabetes is brittle, something you also

seem worried about. Although having diabetes means a lot

more work and constant testing, especially when brittle, it's really

not been that difficult to deal with. After a while, I got used to all

the testing, and I was so surprised at myself that I was able to

learn to inject my own insulin. Before this, I never thought I

would be able to do it, I didn't like needles and would always turn

my head when I had to get a shot or have a blood test done. Yet

somehow, I learned quickly and it's so automatic now that I

hardly think about it.

My brittleness seems very mild at this point. I am very strict

about testing often and knowing what my glucose levels are

doing, so far the brittleness has been only an occasional event.

Yet I will truthfully say that I don't have the medical experience to

predict what kind of outcome you would have if you were to go

though this surgery. That kind of question would be best

answered by the doctor performing the operation. I'm sure that a

consultation with Dr. Sutherland, or whomever you would see for

the procedure, would be the best place to find a truthful answer

to those type of questions.

There is a website called DiabetesStation that has a forum for

patients that have undergone the pancreatectomy and auto islet

transplant.. You might be interested in joining this group and

asking some of your questions there. Although all of us here

want to help you as much as we can, a group like this might

have more of the answers about this procedure that would help

you, as well. This is the url for the group:

http://www.diabetesstation.com/

If you go there and check on the schedule, you'll see a group

called " Islet Pioneers " , these are the patients of TP-ICT's that

have a discussion group. I also noticed on the scedule board

that Dr. Sutherland will host a live chat on March 25th at 9:00 pm

EST, on Pancreas Transplantation Advances. I went to a chat a

few weeks ago hosted by Dr. Gruessner, one of Dr. Sutherland's

associates, that was really informational.

I hope this information was helpful and that you'll let us help you

with any more questions you can think of.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are personal opinion only, and

should not be substituted for proffessional medical consultation.