Living Kidney Donor Conversations: Breaking the Silence – Introduction

What is Living Kidney Donation?

Living kidney donation is when someone healthy gives one of their kidneys to someone who needs it. Although most people have two kidneys, only one is needed to live a healthy life. In the U.S., about one third of the people who need kidney transplants get them from living kidney donors. The rest come from people who have died (deceased donor).

But this is not enough. 

There are over 95,000 people on the kidney transplant waiting list.

We need more living kidney donors to provide a healthy kidney to these people before they die. 

Why is it time to Break the Silence?

It is time to break the silence and openly discuss the details of living kidney donation. With this peek inside the process, maybe you will gain a clearer and deeper understanding of this unusual movement to help others in need. 

Even though I have been a nephrology nurse for over 35 years, I didn’t fully understand the process until I went through it myself, as I had never talked to a donor about the entire process. So this is a window looking into the living kidney donation experience. I want this to be less of a mystery, and more of a topic that anyone can talk about. 

By acknowledging these stages, it might inspire one more person to be curious about donating and consider starting the process.

What are the Stages of Living Kidney Donation?

After doing presentations about living kidney donation, listening to many other donors tell their stories, and after donating a kidney myself, 8 stages began to emerge. Most people think donors wake up one day, know someone who needs a kidney, and surgery is scheduled. It is much more complex. It can be a long process, always done with careful consideration, and an intense medical workup. Not everyone who considers donating can or will donate.

You must be healthy physically and mentally. No one should ever be pressured into donating their kidney. As one moves through the process, you are never locked into the decision to donate. At any point in time, even up until you are going into surgery, you may change your mind. The transplant team will support your decision and you do not have to tell the person who was to get your kidney why it didn’t work out.

These stages were developed to help people understand the entire process, not just those that get the headlines in the news. You may have seen pictures of a donor and recipient after surgery in hospital gowns hugging. That is only one tiny moment in time when looking at the donor’s journey.

How Long is the Donation Process?

A kidney donor may go through the entire process slowly (many years) or very quickly (less than 1 year). And each stage itself may take a long time (many years). Each person is different and their timelines will be different. Many tests and meetings are not within their control and can take longer than desired. 

Want to learn more?

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

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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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