Links

TWO DIFFERENT LUNG TRANSPLANT WAITING LISTS –  (I am double-listed)

1a. Stanford Hospital and Clinics, Stanford – California

I am double listed here at Stanford and at USC. I’ve never been seen at Stanford before except for my transplant evaluation before getting listed. I was listed here on May 7th, 2012.

1b. Keck Hospital of USC, Los Angeles – California  (this is the hospital’s new name as of 2012)

I am double listed here at USC and at Stanford. USC is where my CF team (doctors, nurses, dietician, pharmacist, social worker and coordinators) have been for almost 20 years, and where my new potential transplant team is. I was listed at USC on September 15, 2011.

CF RELATED LINKS

1. CF Voice
An online community for people of all ages living with cystic fibrosis. A place for motivation, inspiration and connection to the CF community.

2. Cystic Life
CysticLife.org is a social network just for the cystic fibrosis community. This positive, uplifting web site is the central location for the CF community to share tips, questions, ideas, experiences and encouragement.

3. CFRI
Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis.

4. CFF
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. We fund more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.

We are a nonprofit donor-supported organization dedicated to attacking cystic fibrosis from every angle. Our focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.

TRANSPLANT RELATED BOOKS AND DOCUMENTARIES

1. Taking Flight: Inspirational Stories of Lung Transplantation More Journeys – by Joanne Schum

Several friends of mine have suggested I read this book of inspirational transplant stories. All the stories in it are submitted as personal experiences. I have read many of the stories now and noticed a lot of people in this book who I know or know of. The author, Joanne Schum, is post transplant 14+ years and doing great. She and I are in currently in contact via facebook.

2. Sick Girl Speaks! –  by Tiffany Christensen

The author, Tiffany Christensen, is an amazing person in so many ways. She is like a little guiding star through the medical maze of transplant and hospital stays. She’s made a career out of being a public speaker and sharing her knowledge. I highly recommend her books.

3. 65_RedRoses –  documentary about Eva Markvoort

It’s a film about Eva Markvoort, as she waited for the call for lungs and follows her through the process. Eva passed away from chronic rejection 2+ years after the completion of the film. This documentary is an amazing tribute to a beautiful girl and what an amazing gift organs can be.

TRANSPLANT RELATED LINKS

1. UNOS

United Network for Organ Sharing (UNOS) is the private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government.

2. OPTN  (Organ Procurement and Transplantation Network)

  • http://optn.transplant.hrsa.gov

  • History
    Scientists and researchers pioneered the first transplant procedures in the 18thcentury. Read about the history of transplantation, and the many medical breakthroughs in organ transplantation since.
  • Donor Matching System
    Matching is the key to connecting individuals waiting for a lifesaving transplant with compatible donor organs.

  • Transplant Process
    A successful organ transplant requires the coordination of multiple transplant organizations, medical professionals, and complex logistics.

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