Valuable Tools for Finding a Living Kidney Donor
Living donor kidney transplantation is the best option for patients who need a kidney transplant. Living donor kidneys function more quickly and efficiently and survive longer than deceased donor organs. However, finding a living donor can be a challenge. Sharing your story is one way to get the word out about your need for a living donor.
What is a microsite?
Dr. Kapur had a unique idea! Help patients who don't have living donors create free websites to spread the word. Thanks to the National Kidney Registry, patients can create free personalized websites to help them find a living kidney donor. The site has built-in features such as a simple donor registration link, living donation education, living donor support protections such as Donor Shield, and buttons connected to social media platforms like Facebook so people can easily share the site.
Here is an example of a completed microsite:
How can I use my Microsite?
Once registered, you can post pictures and tell your personal story of why you need a kidney to help potential donors learn more about who you are and feel a personal connection to you. Your story can include what led to your need for a kidney transplant, what your life is like now, how it would change if you were able to find a living donor, and personal details such as family, interests, and hobbies.
Once you set up your Microsite, you can share the unique URL to your site through email, social media, and face-to-face communication with the 250 free business cards you will receive after the site is activated. You will also be assigned a donor search coach to help you.
Things to remember when writing your story:
- Be vulnerable and authentic. Your story is what makes you unique.
- If you mention your friends and family, explain why they can't donate.
- Share your hopes and dreams, including your plans after the transplant.
- Do not offer any compensation to potential living donors.
- Remember to double-check grammar before submitting.
- Learn about living donation so you can share facts in your story!
- Watch The Big Ask: The Big Give
- Watch our Conversations with Cornell Kidney on Living Donation
To learn more about the Microsite Program, email elb9128@nyp.org or visit findakidney.org
A Mother's Journey to Finding a Living Kidney Donor Utilizing the Microsite
THE ASK: Asking family and friends to consider living donation and getting tested was one of the most challenging things I have ever done! I'm the type of person who, if I need something done, I do it myself. This time, I worked up the courage to ask for help. It was amazing how my young children (ages 6 and 14 at the time) wanted to be my donors. Once I created my Microsite and shared it on my social media pages, asking or talking about my story to others became second nature.
TO MY FELLOW WARRIORS: To the patients out there waiting, please never give up. A week before I got the call, I felt defeated, and I had just battled two episodes of peritonitis. Just when I was ready to throw in the towel, I received that life-saving call. The journey may seem long and hopeless, but don't lose faith. Set up your Microsite and continue sharing your story on all your social media platforms. When you least expect it, the phone call will come.
MY TRANSPLANT: I had been on the list for four years, but on June 22, 2022, I was notified that a person saw my microsite and decided to donate on my behalf, giving me a voucher, which is similar to an IOU. I received a phone call on June 2, 2023, that 20 days from that date, I was going to receive my kidney. Precisely a year later, on June 22, 2023, I got my transplant!
POST-OP: The first three months post-transplant was a complete readjustment. I spent time resting a lot, trying to move around without tiring myself out, and putting alarms on my phone to remember to take my medication. By month 4, my energy returned! The best part of this recovery is that I can cook again. I love making my children home-cooked meals. When my body says it's time to rest, I rest, but the energy boost I now have is truly AMAZING.
THE GIVE: I have an incredible connection with the person who donated on my behalf in 2022. I am in constant contact with their family, who are true gems. I am forever grateful to have them in my life.
CHALLENGES: Before getting my transplant, people would tell me about the many meds I'd be taking daily, and I thought this was going to be the most challenging thing to deal with, but that has been a piece of cake. The emotions behind the scenes take a toll on me; one minute, you can be the happiest person on the planet, and suddenly, BOOM, you're hiding in the bathroom crying in silence. To manage my emotions and cope, I've joined a Kidney Donor/Recipient Support Group and spoken to my supportive transplant team, which has been a godsend.
MY SECOND CHANCE AT LIFE: Spending more time with my kids, being healthy enough to go places with them, and taking part in their everyday lives without the guilt of being so exhausted is genuinely life-changing. I am eternally grateful for the new moments and experiences with them and my loved ones. I aim to grab this life by the horns, not take anything for granted, and live happily!
A THANK YOU TO MY TEAM: The nurses and staff at Rogosin PD Unit - Beverly, Zenny, Rhodora, Betty, Beth, Denise, Manny, and Dr. Vesh - they're my extended family, and I will forever be grateful for them. My current post-transplant team (Dr. Salinas, Dr. Carpenter, Samantha, my PA, and everyone else on the post-transplant unit have been the best. They take their time with me during my clinical visits, ensuring all my questions and concerns are addressed and answered. I would 100% wholeheartedly recommend NYP/Weill Cornell to anyone who needs a transplant.