Rejected for a Life Saving Clinical Trials Surgery....Again

[Guest guest]

Greetings to all,

I am feeling somewhat discouraged right now. I have been having progressive

worsening of my diabetes and really need a transplant. Unfortunately, I don't

qualify. I highly suggest that if anyone still has their own islet cells that

they take the step and salvage them by transplanting them into your liver.

There is absolutely nothing that makes sense that someone isn't " sick enough. "

That is just ludicrous. The only people who have successful surgeries are those

who do this immediately after being diagnosed. If you do not have diabetes....

yet... because each and every person will, then I can understand why you don't

believe me when I say that diabetes is 100 times worse than pancreatitis.

Pain is one thing, but blindness, neuropathy, kidney failure, and more are

complications that are nearly impossible to skip out of. I am beginning to have

signs of all of these. I have applied to three different islet cells clinical

trials and have been rejected by them all. The main reason is that my weight

exceeds the guidelines. And, I know that there are plenty of folks out there

that

fall into the weird category of being unable to lose weight regardless of

eating next to nothing.

This is the response I received when I applied. Don't let it be yours.

Sorry you don't qualify for the Clinical Trials islet transplantation trials.

Thank you for submitting your information. Islet transplants are currently

being performed in very small numbers of selected patients with type 1 diabetes.

Patients in whom the risks of immunosuppression can be justified and in whom

success is more likely are considered for participation. Below is a list of

the inclusion and exclusion criteria for our current clinical trials. At this

time you are ineligible for participation due to the following reasons that are

highlighted in red

Criteria for qualifying are:

Type 1 Diabetes.

Weight must be under 160 pounds for females and under 180 pounds for males.

We are currently unable to transplant an individual of your weight. Research

is underway to improve the efficiency of islet collection and these

transplants may be possible in the future.

Body Mass index must be less than 27.

calculated by: mass (in kg) / [height (in m)]2

Persons who are overweight tend to have insulin resistance and therefore have

higher insulin demands that may not be met by the transplanted islets.

Research is underway to improve the efficiency of islet collection and these

transplants may be possible in the future.

Total insulin must be less than 50 units per day.

Age must be greater or equal to 18 and less than 66.

Number insulin injections must be 3 or more or pump.

Smoke free for the last 6 months.

Any history of cancer excludes subject.

Answer " yes " to one of four complications.

Please do not be discouraged as islet transplantation is still being

developed. It is our goal that this procedure will be available to many more

patients

with type 1 diabetes

If any of the information you provided changes, we will be glad to reconsider

you for islet transplantation. Feel free to contact us at:

Diabetes Institute for Immunology & Transplantation

University of Minnesota

MMC 195

420 Delaware Street SE

Minneapolis, MN 55455

diitinfo@...

Sincerely,

The Islet Transplant Team

Hoping others learn from my mistakes.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International