In the spring of 2001,  I was diagnosed with a genetic and fatal kidney disease called Alport's Syndrome.  It appears that my grandfather passed this on to his three children, who in turn passed it on down the line.  Other family members are showing symptoms in various ways, and my brother Jack died of it in October 1998.  (I have created a family chart showing the prevalence of Alport's Syndrome in this website.)  As you can imagine, this devastating disease has taken quite a toll on my family.  There are now three (perhaps four) of my dad's grandchildren who are symptomatic of Alport's.  Hereditary Nephritis is a major cause of CKD. 

For the past seven years, I've been under the care of a wonderful nephrologist at MGH, Dr. Leslie T. Fang.  He informed me in October 2005 that my condition had progressed to the transplant stage.  In plain language, I needed a new kidney.  I was told lthat my best chance for expediting the transplant was to identify a donor on my own.  This was obviously no small task.  My blood was extremely difficult to match.

Unfortunately, my husband and son were not blood compatible, nor my son or any other family member because of the hereditary disease.  Because my need was great, however, they were willing to test my husband's blood and try a fairly new technique of making his incompatible A type blood compatible with my 0 type, not easy to do.  In parallel to doing this, I continued my search to find a donor.

My friends formed "Team Diane" where the focus was to spread the word about my need.  Simultaneously, I was listed at the Organ Bank.  Amongst all the activity in searching for a donor (TV, newspap3ers, newsletters, phone calls, friends, etc.) on May 29, 2006, I received a call from Massachusetts General Hospital that they had a perfectly matched, compatible kidney.  On May 30, 2006, I received my new kidney.