Lungs for Amber:
A Memorial

Amber, Age 16

This photo was taken in December of 2002. Amber was 16 years old, and active in many school programs, including Cheerleading.

Amber had Cystic Fibrosis (CF), a genetic disorder primarily affecting the lungs and pancrease.

CF causes extremely thick mucus to form in the lungs, sinuses, and other mucus membranes and organs. All of this thick, sticky gunk provides an excellent breeding ground for many types of germs such as Pseudomonas Aeruginosa, Burkholderia cepacia, and the usually innocuous fungus Aspergillus fumigatus, commonly found in libraries and other areas where old documents are stored.

Photos of Ambers headstone, taken on Memorial Day, 2004, are available here and here.

  Amber enjoyed a life of relatively few infections and stays in the hospital, until her last few years. During the summer of 2003 she endured a 3-week stay, following a severe battle with pseudomonas and C. Difficile. She was only allowed to leave if she remained on oxygen.
  Two days later, Monday, Sept. 8, at approximately 3:00pm, she was rushed to the hospital from her doctors office, and admitted to the pediatric ICU. Her lungs, been badly beaten and worn out from the infection, had slowly deflated and collapsed. She spent the next 48 hours on a bi-pap breathing machine, so her chest could rest and heal. It was touch and go. Doctors said that if she survived the next 48 hours after that first night, her odds of survival would go up dramaticly. However, she was given less than 6 months to live. Few of us willingly left the hospital that first night.

  After several days, the verdict was in: Her lungs were exhausted, and it was anyone's guess as to how long they would hold up on their own. She would be weaned off the bi-pap over the next week, and sent to the pediatrics unit to continue her recovery.

  Amber was preparing for a Living Lobar Transplant when she lost her battle. This is a relatively new proceedure, created in 1993 by Dr. Vaughn Starnes of the University of Southern California. You can find more information on at the USC Transplant website
We were in the process of seeking out viable living donors, willing to give the gift of life, thru the donation of a single lobe of one lung. You can learn more about the process, both for donors and reciepiants, from the Lung Transplant Patient Guide.

Updates to be posted as I have time.

Last update: 8/8/04

Lungs for Amber: A Memorial

Amber, Age 16

Amber had Cystic Fibrosis (CF), a genetic disorder primarily affecting the lungs and pancrease.

Lungs for Amber:
A Memorial