Testimonial of a surgery tissue donor
by Frank C., Colorado

I can only encourage others to donate for the sake of future generations of their own family, as well as our entire VHL family.  The more tissue donated the more experience and possible cure results can come from this type of a harvest.  Why would any family member want another family member to go through what they had gone through if it could have been prevented…..or cured?

The process has been this simple for us.  Initially, we called to voice our interest in the tissue bank.  Paperwork was sent to confirm our interest in participation, and to get the ball rolling with the tissue bank (fax or mail).

From there, we have called to notify the tissue bank of upcoming surgeries.  During the call, we provide contact telephone and fax numbers to the surgeon's office and surgery site hospital to the tissue bank.

Then, before going into surgery, we make sure the nurse and admitting staff are reminded a tissue donation from the surgery has been set up just as a courtesy (perhaps the left hand doesn't know what the right hand is doing. Give these guys some credit--a hospital is a busy facility).  Each time the donation has been
confirmed immediately, and off to surgery I go.

I understand there may be some concern about taking more tissue than is necessary.  That is not how this works--what your doctor plans to take from your body is all that is taken.  Samples are shared of the specimen that is harvested--no additional tissue is taken or required.  (What will eventually end up in the 'slop bucket' may save a person's life in years to come).

Unfortunately, this may be a 'paperwork' headache for those in the hospital lab, administration office and tissue bank itself, but wages are being paid to accomplish results.  My paperwork as the donor was at best a five minute process, and the telephone calls average the same five minutes for each surgery.

I cannot encourage others VHL patients enough to allow tissue donation--it may save lives of the generations ahead of us--and we can be part of that--how wonderful is that!

-- Frank C., with the support of his wife, Paula Jo
May 9, 2006

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