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More Handy Online Patient Education Resources


annemarie kaan

ANNEMARIE KAAN, MCN, RN
NHSAH Council Chair
St. Paul's Hospital
Vancouver, British Columbia, CANADA

akaan@providencehealth.bc.ca


Transplant Living
Transplant Living (www.Transplantliving.org), sponsored by UNOS, is a general website that provides basic information about transplantation at a reading level appropriate to lay people just beginning the transplant process. It does not get granular enough to replace transplant education or to actually prepare patients for surgery, but guides patients in the right direction. Information is factual and does not endorse a specific center. Of note, this site offers information in Spanish.

Second Wind Lung Transplant Association, Inc
The Second Wind Lung Transplant Association, Inc (www.2ndwind.org) is an international organization with local and virtual chapters. This patient run site provides an online community for lung transplant candidates and recipients in search of a virtual support group. Powered by Google, it offers translations in 31 different languages. The mission statement of Second Wind is to improve the quality of life for lung transplant recipients, lung surgery candidates, people with related pulmonary concerns and their families, by providing support, advocacy, education, information and guidance through a spirit of service, adding years to their lives and life to their years. Indeed the website meets this directive. Advice can be found on everything from financing transplant to preparing for and living with lung transplant. 2nd wind.org is replete with links to community based resources to assist lung transplant patients and their loved ones. The medical information herein is superficial, but accurate.

Help Hope Live
Hearing that you or your loved one needs a transplant is a difficult pill to swallow for most people. Often times families are approached after hearing there are no other medical or surgical options. Having to hear this news and then discuss not only the medical but financial implications it a harrowing affair. Help Hope Live (www.helphopelive.org) is a comprehensive website aimed at fundraising for transplant or catastrophic injury related expenses not covered by insurance. The website has patient and professional portals. Patients are provided access to specialists who provide fundraising guidance, fiscal accountability and information on tax deductibility. Professionals can learn how to discuss fundraising with patients and help patients plan for fundraising. You must sign-up for access to either portal which keeps information confidential and pertinent to your specific needs. Often times as health care professionals, the focus is on the medical aspects of transplantation. Financial concerns are looked at when evaluating a patient for candidacy, but most often the focus is on bills to be paid in the short-term. As we approach the new year we need to become more cognizant of the long-term financial implications transplant puts on patients not just related to medical expenses but all aspects of life. The Help Hope Live website is a great place to start.



Disclosure Statement: The author has no conflicts of interest to disclose.