To help build the Power2Save.org website, I want to start gathering some information on what you all want to see. So, what information do you wish you had when your transplant journey began? When and how did you find this information? Feel free to respond with a link to share!
What information do you wish you had ... - Power2Save Transp...
Power2Save Transplant Community
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What information do you wish you had when your transplant journey began?
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Rmassi
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a video interview of people at various stages post transplant, from a variety of transplant options. talking about how to choose, multi-listing, how to prepare, emotional and psychological challenges, expectations for caregivers, family and donors, etc.
assigning a peer mentor at the transplant center.
Helping the caregiver with what life will be like after transplant.
Immunos - everything you need to know, including costs.
BetterKidney4MeWelcoming CommitteeP2S Volunteers
Speaking for myself, prior to my first kidney transplant, I wish I had a better understanding of what kidney disease entailed and a better awareness of how I needed to be my own best advocate. I needed to have someone teach me about how to handle the greatest threat of all and that is FEAR. It consumed me and by doing so, I lost my ability to hear, learn and determine how best to move forward with dealing with kidney disease. BetterKidney4Me
LHines & BetterKidney4Me thank you so much for sharing! These are great and so helpful for when we begin building these materials moving forward. If you have any other ideas, please do not hesitate to reach out!
That transplants don’t always work. My live transplant from my dad lasted less than 24 hours due to a clot. A devastating consequence that was never discussed or even mentioned.
Thanks so much for sharing your experience with us. Am I understanding correctly that the possibility of organ rejection was never discussed with you prior to receiving your transplant?
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