Living Kidney Donor Conversations: Breaking the Silence – Stage 3 – Active Exploring

There are 8 Living Kidney Donor Stages. Stage 1 is Idea is Sparked and Stage 2 is Quiet Thinking. If you are curious about living kidney donation and started searching for more information,  you have reached Stage 3.

Stage 3 Active Exploring

 In this stage, you go from passively thinking about living kidney donation to actively trying to seek out more information. There are websites, books, and YouTube videos that you didn’t know existed. You find kidney donors on Facebook, maybe join their groups, and message them to ask questions about their experience. Throughout this exploration, you learn more about the kidney transplant waiting list and the donation process.

  • Kidney Transplant Waiting List

    • Most people don’t typically die in the right way to donate their organs at death. That is why less than 1% of those who register to be organ donors will ever donate.
    • There about 165 million people registered to be organ donors at death. But because not enough of them qualify to donate, there are still 95,000 people on the kidney transplant waiting list.
    • The average wait time for a kidney is 5 years.
    • Only 1 in 5 people on the list will get a kidney. Most will die waiting.
    • Those on dialysis have a poor quality of life and feel like it is a slow death.
    • People with a living kidney transplant live longer and a much better quality of life than those on dialysis or with a kidney from a deceased donor. 

If each of the *36 million healthy people in the U.S. considered living kidney donation, this crisis could be solved and kidney transplant waiting time and the list would be very short.

  • Living Kidney Donor

    • Most people have 2 healthy kidneys. Some people are born with one kidney and don’t even know it.
    • You can live a healthy life with one kidney.
    • Extensive health screening is done to be sure you are healthy enough to donate a kidney.
    • Kidney donor surgery is typically done with a minimally invasive technique (laparoscopic) with very low risk (lower risk than gallbladder surgery).
    • Hospital stay is typically 2-3 days with a recovery time of 4-6 weeks.
    • Most people who have donated cannot tell they only have one kidney and nearly all of them say they would do it again if they could.

There is so much information once you start looking. One book, in particular, could be helpful:

“The Kidney Donors Journey: 100 Questions I Asked Before Donating My Kidney” by Ari Sytner.

You can search and order on Amazon. It is a quick, easy read and it answers many questions in simple terms. It also addresses talking with your family when they may not be supportive of living donation.  

This exploration stage can take a few minutes or years before moving forward and starting the workup. You will continue to get valuable information about donating a kidney as you go through the process. Besides transplant centers, there are other helpful resources online. The education even goes on after donating.

Each of these stages will bring new and unique questions. Answers will be specific to your personal situation. 

Want to learn more?

Future posts of the “Living Kidney Donor Conversations: Breaking the Silence” series will provide you with general guidelines of what the journey looks like, even though every individual situation is unique. Get ready for more of this living kidney donor adventure! Stage 4 is next.

Previous posts in the Living Kidney Donor Conversations: Breaking the Silence series can be found here:

*estimate that 12% of  over 300 million adults in the U.S. are metabolically healthy

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Glenna Frey, APRN-CNS, is a nephrology nurse who donated her kidney in April 2017 to a stranger.
Amanda Frey, M.A., LMFT, LPC, is a Marriage & Family Therapist living with kidney disease.
Together, they co-founded Kidney Donor Conversations in 2018 to provide education about Living Kidney Donation.

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