Below Are My Favorite Resources

Inspiring But No BS Reading- Books, Blogs, and Magazines

Between Two Kingdoms by Suleika Jaouad is a memoir that chronicles her journey from being a young woman with a promising future to battling leukemia in her early twenties. It explores her transition from patient to survivor, grappling with the challenges of life after illness, and embarking on a cross-country road trip to reconnect with the people who supported her along the way.

Bonus Days Magazine is a quarterly print publication that shares inspiring stories of resilience, particularly focusing on transplant and chronic illness patients, their families, and donors. Each issue features personal narratives, reflections on gratitude, and insights into navigating life beyond diagnosis, aiming to remind readers of the beauty and potential in every circumstance.

No Cure for Being Human by Kate Bowler is a memoir about being diagnosed with stage IV cancer in her thirties and how it reshaped her understanding of control, hope, and meaning. With honesty and humor, she challenges society’s obsession with self-improvement and debunks the myths of the self-help industry.

Rare Disease Girl,” a blog by Taylor Hoffman, chronicles her journey of living with a rare genetic disorder while navigating the challenges of chronic illness, medical uncertainty, and advocacy.

How to Create a Living Donor Campaign

Danielle’s Kidney Campaign is the personal page I created to find a donor. I also used this social media post to share my story. Please feel free to use them for copy and content inspiration.

The Find a Kidney coaching program mentors kidney patients in finding a living donor, offering support with outreach, storytelling, and microsite creation. I haven’t used this resource myself, and it’s only available to those registered with the National Kidney Registry.

The National Kidney Foundation offers a webpage and an online course on finding a living donor, providing a comprehensive overview of the process, available resources, mentorship opportunities, and strategies for running a successful campaign. While the course is excellent for beginners, those with more advanced social media skills may find it fairly introductory.

The National Kidney Registry’s Find a Donor program helps patients connect with potential living donors through educational resources, donor search tools, mircrosites, and personalized support. However, it only works with select transplant hospitals, so eligibility depends on where a patient is receiving care.

Organizations That Match Living Donors with Recipients

  • Donor Outreach for Veterans

    Donor Outreach for Veterans (DOVE) is a nonprofit organization that helps connect living kidney donors with veterans in need of a transplant. They provide support, education, and advocacy to facilitate life-saving kidney donations for those who have served in the military. They helped me find my donor.

  • Kidneys for Communities

    Kidneys for Communities is a nonprofit organization and through their Community-Directed Donation™ program, they allow living donors to direct their kidney donation to a specific group they wish to support, such as religious affiliations or alumni groups, potentially starting a paired kidney chain that saves multiple lives.

  • Kidneys for Kids

    Kidneys for Kids is a nonprofit organization dedicated to supporting children with kidney disease by helping them find living kidney donors. They offer resources, education, and advocacy to families, as well as provide a platform to raise awareness and connect potential donors with children in need.

  • National Kidney Registry

    The National Kidney Registry helps living donors by providing a platform to connect with kidney recipients through a secure, anonymous process. They offer support with logistics, medical testing, and financial reimbursement, ensuring donors can safely and confidently make a life-saving contribution.

  • Renewal

    Renewal is a nonprofit organization that helps facilitate kidney transplants within the Jewish community by providing guidance, support, and donor-matching services. They assist both donors and recipients throughout the process, offering resources, education, and emotional support.

Educational Resources for Individuals Living with Kidney Disease

  • American Association of Kidney Patients

    The American Association of Kidney Patients Fellow Patients page connects kidney patients with a network of peers who share their experiences with kidney disease, dialysis, and transplantation. It offers patient stories, advocacy opportunities, and resources to empower individuals to take an active role in their healthcare journey.

  • American Society of Transplant Surgeons

    The American Society of Transplant Surgeons  online learning platform offers educational resources and training for transplant professionals, covering topics such as organ donation, transplantation surgery, and patient care. It includes a variety of courses, some offering Continuing Medical Education (CME) credits, and I’ve taken some of the free classes to better understand kidney health and transplant sciences.

  • Kidney Health Coach Program

    The American Kidney Fund’s Kidney Health Coach program is a free educational initiative that trains individuals to raise awareness about kidney disease, its risk factors, and prevention in their communities. I found it to be the most user-friendly and well-rounded training I took to better understand my own kidney disease.

  • National Kidney Foundation’s Continuing Medical Education

    The National Kidney Foundation’s Continuing Medical Education (CME) page offers free and paid courses for healthcare professionals to deepen their understanding of kidney health, disease management, and patient care while earning Continuing Education Units (CEUs). I’ve personally taken some of the free classes to better understand kidney health and advancement in transplant sciences.

  • National Kidney Foundation Kidney Health

    The National Kidney Foundation’s Kidney Health page provides essential information on kidney function, risk factors for kidney disease, and steps for prevention and early detection. It offers resources on maintaining kidney health, managing chronic kidney disease, and understanding treatment options.

Living Donation FAQS

If you’re looking for an overview, check out the National Kidney Foundation and the American Society of Transplantation.

It is very similar to life with two kidneys—there are usually no long-term medical issues and if there is; you are placed at the top of the kidney transplant list.

You will have your own independent medical team and coordinators who will advise and protect you throughout the entire process. To be considered as a potential kidney donor, you will undergo an extensive evaluation and meet with a comprehensive medical team. This includes a dietitian, independent living donor advocate, financial coordinator, nephrologist, nurse coordinator, pharmacist, psychiatrist, social worker, and surgeon. They will conduct blood and urine tests, as well as a CT scan, chest X-ray, EKG, and a mammogram for women.

All medical costs, including surgery and follow-up care, will be covered by my insurance, and additional support is available for lost wages and travel expenses.

Yes, the Family and Medical Leave Act (FMLA) does cover kidney donation. Under FMLA, eligible employees can take up to 12 weeks of unpaid, job-protected leave for serious health conditions, which includes organ donation. This means that if you are donating a kidney, you can take time off work to recover without fear of losing your job. To learn more, please click here.

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