24 YEARS OLD
My name is Ashley (aka Tinkerbell) and I am 24 years old. I received my double lung transplant on 1/7/2005 at the University of California San Francisco and have been great ever since! My initial disease was papillary thyroid cancer that spread to my lungs and the best treatment was radioactive iodine. My type of cancer ate that right up but unfortunately left my damaged lungs in its wake. I got worse and worse and was soon diagnosed as having pulmonary fibrosis or scarred lung which is much different than cystic fibrosis that most kids my age get. I’ve had my ups and downs since everything happened which is only natural but my main goal is to always try to keep a positive attitude but never be afraid to cry or be frustrated and also to live life to the fullest.
On April 13, 2007, something happened at a local hospital in Phoenix that affected hundreds of lives in Arizona and the Southwest. A local Scottsdale woman received the gift of a double lung transplant and so began a new era at the facility. Since then the dedicated doctors and nurses of the Heart and Lung Institute at St. Joseph’s Hospital Medical Center have continued to give the gift of life to others through lung transplants. These transplants gave the recipients the ability to do things they believed had been lost to them forever.
Elated with being able to live “normal” lives again, a few of the lung transplant recipients got together and with their loved ones formed the Lung Transplant Support Organization, (LTSO) which is also known as GOTMASK.ORG. This non-profit corporation exists to help other lung transplant recipients at St. Joseph’s Hospital. The typical costs of a lung transplant are in the few hundreds of thousands of dollars and even with exceptional health insurance, there are considerable costs that the recipient and their caretakers face. These costs range from traveling back and forth from the hospital for testing prior to transplant to multiple post transplant checkups in the Heart and Lung Institute (HLI). The transplant requires the recipient to stay in the local area for weeks after receiving the new lungs. If the recipient doesn’t live locally, costs quickly add up.
The LTSO, through various fundraising events and the sale of t-shirts, challenge coins and key rings hopes to mitigate some of the costs for St. Joseph’s lung transplant recipients. We are dedicated to providing assistance in temporary housing, food and travel costs, and for those recovering at or returning to the hospital, portable netbook computers to be used during their stay to keep in touch with the outside world; because of the frequent initial need for them to be isolated from all, even loved ones.
There are no paid administrators or employees at the LTSO; all are volunteers. If you would like to help us help others, please look at our items for sale, volunteer, or donate. If we can answer any of your questions please feel free to contact us.
The mission of the Lung Transplant Support Organization is to provide limited assistance to fellow lung transplant recipients including but not limited to:
a. Reimbursing a percentage of out
of pocket / co-pay prescription
b. Providing gas cards or funds to
cover ride services to Clinic
and / or Pulmonary Rehab.
c. Providing assistance with
expenses or needs related to the
transplant process (i.e. assist
with emergency cash in case of
unforeseen / emergency medical
expense such as an ER visit,
emergency vehicle breakdown
(which is the only means to meet
clinic appointments, etc.).