Living Kidney Donor Conversations: Breaking the Silence – Stage 1 – Idea is Sparked

Can living kidney donation bring more purpose and meaning to life?

You are going along, living your busy life. You are working from home and don’t get out much. Life has been rather difficult this past year with COVID, masks, isolation, and minimal socialization. 

TED Talk

You’ve never given any consideration to the idea of donating your kidney. Then one day, you notice an interesting TED Talk on YouTube about living kidney donation. It catches your attention, so you watch it through to the end. It’s a story of a man, around age 35, who donated his kidney to a stranger. By donating, he saved the life of someone with kidney disease. The 55 years old recipient did not have to start dialysis (which typically can be a horrible lifestyle and slow death) and is able to spend more quality time with her children and continue working. The man in the TED Talk looks strong and healthy, even though he donated over 5 years ago.

It turns out there are around 95,000 people on the kidney transplant waiting list and most will die waiting for a kidney. 

Kidney Disease

For those with kidney disease needing treatment, they can live longer and with a better quality of life with a kidney transplant compared to dialysis. And a living kidney transplant lasts longer than one from someone who has died. Most people on dialysis look sick and have little energy for even normal activities. Most are not able to work and struggle to get through each day. 

The “I’m an Organ Donor” Myth

What many caring people do for those on the transplant waiting list is register to be an organ donor. 

Less than 1% of registered organ donors will ever donate because of the special way you must die. 

That means it is very rare to donate, even though you have signed up. People falsely claim “I’m an organ donor”, but have not donated. Registering does not equal donating. Living kidney donation can be another option but most people have no idea what is involved in this process. 

What is Stage 1 of Living Kidney Donation?

Stage 1 of living kidney donation is hearing a living kidney donor story.  In addition to a TED Talk, it could be: 

  • Reading an article
  • Listening to a podcast
  • Talking to a living kidney donor
  • Hearing about someone who needed a kidney and later found a living donor

New Awareness

You are enlightened with a new awareness that someone can donate one of their kidneys and live a long, healthy life with the remaining one. This seems odd and something YOU would NEVER consider doing. You didn’t even know this was possible. You’ve never heard anyone talk about this before, so you likely think it must be very risky and unsafe. And you are disappointed to find out that registering to be an organ donor may likely never result in donating.

Planting the Seed

This is the stage that plants the seed of the idea of donating. Consciously or unconsciously, you’re considering saving someone’s life and this could bring more meaning and purpose to your life.

Almost all living kidney donors say they would do it again if they could and it has enhanced their quality of life.

The idea of donating could be hidden and dormant for many years. It may be a long time before any action is taken. For some, the idea sprouts quickly and they continue to the next stage immediately. Either way, the idea of living kidney donation is sparked.

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! Stage 2 is next.

If you missed the first post in this series, click on this link “Living Kidney Donor Conversations: Breaking the Silence – Introduction”.

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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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