5 Tips for Managing Your Search for a Kidney Donor
Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
When my nephrologist told me that I needed to set up an appointment for a kidney transplant evaluation at the hospital, I couldn’t quite wrap my head around this. I probably also didn’t want to face the facts. I knew I had chronic kidney disease, but a kidney transplant. No way. That was for really sick people. I was still feeling pretty good. I mean, yes, I was a little tired, but I wasn’t sick enough to need a transplant! Really?
Since that day, I have discovered that a kidney transplant is the best treatment for my condition. The surgeon informed me I am a perfect candidate for a living donor kidney transplant.
Now all I have to do is find a healthy kidney.
I went public with my search to find a living donor in April of 2020. Although I do not have a confirmed match yet, I did manage to get numerous offers of donation after sharing my story, so testing continues until someone on my list proves eligible. Along the way, I’ve had some triumphs as well as some disappointments.
Here is what I have learned.
1. Remember That You Are Fighting For Your Life
I completely understand all the feelings that surface when you have to rely on another person to save your life. It can be embarrassing, annoying and uncomfortable. It can make you feel angry, guilty and pushy.
I had all those feelings more than once, but you have to make a commitment at the beginning of your search that you are going to fight like your life depends on it.
When going public with your ask, put your emotions aside and bite the bullet.
I expected people to feel sorry for me or to start distancing from me once they knew about my need for a kidney. I did not want to be known as the sick guy.
My fears were unfounded. All I received was love and support from my family and friends, as well as total strangers. It’s been lovely and very humbling and confirmed my belief that people are good and want to help others.
2. Start With a Small Circle and Expand Out From There
Most people start their search by telling their family and friends, but donating a kidney is not for everybody, and nothing is a guarantee.
Your donor will need to pass many tests before they are approved as an eligible candidate. Not all family and friends will be healthy enough to be considered though.
After I let my inner circle know about my need, I expanded from there to include some coworkers I was close with, members of my church and the people in my town.
I did this in tandem with my larger search on social media. Sending the news to an inner circle first helped me in several ways. I felt supported emotionally, which bolstered my confidence in sharing with strangers. It also allowed my people to be my ambassadors and advocate on my behalf. This let my message reach more people without my having to do all the work to find them.
3. Don’t Rule Anyone Out as a Donor
You may be lucky. Maybe your sibling or best friend will want to donate and will be your perfect match. I really do hope that is the case, but of course, life is not always that simple.
I was surprised where some of my offers came from — the kind person who I saw at the gym before the pandemic, the dog walker who passes by my house every day and even my sister’s ex-husband. Not everyone will want to donate a kidney, but you will find most are happy to help and spread the word in whatever way they can.
You don’t have the luxury of choosing who gets to be your donor. So, do not rule anyone out because the idea of being indebted to someone you know makes you feel weird. Trust me, you’ll feel this way regardless of who it is.
4. Use Every Resource You Can Get Your Hands On
I started a website, a Facebook page and an Instagram channel to spread the word. I post on social media about three times a week. I added a media corner on my website for local news to effectively cover my story. I’ve learned to use hashtags and give interviews. I’ve had friends with thousands of followers on their social media share my story to help get the word out. I’ve hung posters on every bulletin board and telephone pole within a 30-mile radius from my house.
There is a wealth of information online about how to set up a website or social media page. If you can afford it, hire a freelancer to set everything up for you. Ask them to teach you the basics, then take it from there. Or if you have a tech savvy friend or family member who wants to get involved, let them build a page for you.
Learn as much as you can and meet as many people as you can. Whatever resources are available to you, it is absolutely essential that you use them to let people know about your need for a kidney.
5. Stay Positive and Keep a Sense of Humor
The road we are on is not an easy one. It is easy to become discouraged. Try to not let it get the best of you.
Following different pages on Facebook that deal with chronic kidney disease has helped me a lot. I have found great comfort from the stories of others in my position. It’s even been possible to laugh at my circumstance. You need some humor to balance out the seriousness of your condition. People will be more receptive to your story, and keep you in good spirits.
People like to help positive, humorous people, not the grumpy whiny types. You get back what you give out. Remember to stay hopeful and don’t give up on yourself. It takes a lot to share your story with the world, dive into all the digital tools needed to get the word out and make sure people are able to register as your donor: but it’s worth it.
Good luck with your search, my fellow kidney warriors.
Getty image by Inside Creative House