Advocate for Better Transplant Opportunities
TransplantStrong Advocates Seek to Optimize All Their Options & Secure A Better and Longer Life. Advocates don’t wait on the ledge of looming renal failure before getting serious about their future. Instead, they’re researching their best options and expanding live-donor transplant opportunities at every turn.
It’s not a matter of if or when complete renal failure may hit; it’s a matter of experiencing failure of a different kind. That being, failure to avoid dialysis. It’s easy to think there’s more time than there actually is, particularly when kidney failure is hard to predict. The objective here is to stay ahead of the eight ball by learning more and doing more to optimize the power of choice.
A Time for Opportunity. The Chinese symbol for crisis depicts symbols for both danger and opportunity. We can learn from this by embracing the opportunity to discover a better path. An addict waits to hit rock bottom before doing something for themselves. Will you choose to be more proactively engaged so you can increase your odds of avoiding dialysis?
Woefully, less than 3% of Chronic Kidney Disease patients are able to secure a preemptive transplant (a transplant performed before the need for dialysis). Yet, transplants performed before dialysis equate to better outcomes. Until this underutilized option is aggressively corrected, patients will need to create their own methods for proactive engagement.
Start Attracting Potential Donors. The thought of sharing your story can be intimidating. Most patients are reluctant to tell others about their need for a kidney transplant because it may sound too needy or self-serving. Yet, when they recognize that their story can increase awareness for all those in need, this assignment takes on new meaning. One patient’s story can help countless others. Individuals can share their story and ask others to help them share their story.
TransplantStrong Advocates share their story, not just for themselves, but for their family and friends – and all those in need who pray for a better tomorrow. Family and friends often feel helpless and look for ways to help. Enlisting their help can be powerful.
Until others understand your urgent need and learn more, they won’t be able to contemplate what it would be like to donate a kidney. Each time you share your story, you open the door a little wider for conversational exchanges that can lead to life-saving opportunities.
Learn More Here: Visit Page: How To Ask Watch Family & Friends Video Link to Living Kidney Donor Overview Watch Friends Share Story: Role Play Video.
Finding a Compatible Donor. It can be extremely challenging to find compatible donors healthy enough to pass all the tests. Compatibility is based on three factors: Blood-Type Matching (see list below), Human Leukocyte Antigens (a specific genetic marker) and Immune System Antibodies.
Recipient w/blood type A = Needs blood type of A or O donors
Recipient w/blood type B = Needs blood type of B or O donors;
Recipient w/blood type AB = Needs A or B or AB or O donors;
Recipient w/blood type O = Can only receive from blood type O.
When a donor is incompatible but medically able to donate, Kidney Paired Donation (KPD) can be considered. Click to learn more about donor chains – PBS video link. Click here for video on Paired Kidney Donation.
Advocate for Kidney Patient Initiatives. Patient advocates are individuals who use their voice to influence actions on issues that impact the lives of those dealing kidney disease.
There are several ways to become a patient-advocate:
1. Know what’s worth fighting for and take action by researching current initiatives: a. Living Donor Protections, b. Immunosuppression drug coverage, c. Kidney disease awareness and early detection
2. Target influential members of Congress who are passionate about health policies. Share your story to put a face on current issues and the urgent call for action.
3. Write letters to local and federal representatives, newspaper editors, radio and television media.
4. Use social media, and volunteer to speak in public community forums.
PUBLIC ADVOCACY RESOURCE MATERIALS: