On my fb group, KidneyStories, I asked the question, “How did you feel when you first heard that you needed a kidney transplant?” The answers were as varied as the people. They ranged from tears of sadness to tears of joy and all kinds of tears in between. The sadness was primarily from thinking that life was over. The joy was from trusting that being approved for a kidney transplant would mean the opportunity of renewed life. My range of emotions spanned the same gamut.  

I felt very uncertain the day that I first found out that I’d either need dialysis or a transplant. My doctor was holding his copy of my labs and I had mine. He went carefully over each number. Some had gone up and others down. He looked at me with concern and said, “According to these numbers, the time has come.”  

I started to shake and cry uncontrollably. My partner escorted me to the car where I just kept crying. There was nothing he could do or anyone else could do. I just couldn’t stop crying.  I noticed the metal taste in my mouth and started feeling nauseous. My body was clearly full of toxins. Sweat was pouring from my limp body. My partner said nothing. I was hoping he’d say something reassuring but there was nothing reassuring to say. Finally, he asked, “Do you want to go home?

Create a Simple Website 

If you’re like me, when your doctor said you either needed dialysis or a kidney transplant, it was overwhelming. I remember this conversation all too clearly. I cried, had some lunch and a drink, then cried some more. I was scared and upset knowing that I would have to do something incredibly difficult – at least for me – which was to ask for help. If I wanted to live a normal life not attached to a dialysis machine, I would need someone else’s kidney. How do you ask someone for that?  

Today, after having received a living donor kidney transplant, and having successfully coached many other patients in need, I can tell you there’s a powerful strategy that transplant centers don’t tell you. You don’t have to ask someone to be your living donor.  

Say what? 

I didn’t ask anyone to be my donor. Instead, I shared my story and need as far and wide as possible. My story included four basic sections:  

I built a simple website and shared it on Facebook. Within six weeks, I received over 32,600 views. My swap donor came forward.  [According to the University of Michigan’s Transplant Center, “A paired kidney exchange, also known as a ‘kidney swap’ occurs when a living kidney donor is incompatible with their recipient, but does match another person on the waitlist.  Two live donor transplants would occur.”

We often think of living donation as a huge sacrifice. I would say that it certainly is! But interestingly, most living donors say that the experience was deeply enriching for them.  Simply put, there are many special people out there who more than embrace the altruism of saving a life.  The question is — how do you reach thousands of people to let them know about your need? 

Believe it or not there are many organizations that have templated “Microsites,” dedicated to giving kidney patients a voice online to share their story. [Oxford Language Dictionary defines microsite as “an auxiliary website with independent links and address that is accessed mainly from a larger site.”

My favorite is The Great Social Experiment. This started off as an incredibly fascinating and riveting podcast documentary series which is an absolute must listen for anyone with ESRD [end stage renal disease.].  After releasing the series, the creator David Krissman created a Microsite tool which gives patients their own webpage to tell their story and has all their relevant information in one place. Why do I like this one the best?  

Regardless of how you create your web presence, the important thing is to share it. A website on its own will not garner traffic. Assemble a team of advocates (close friends and family) that will share your site far and wide. Don’t stop sharing until you find your donor.  

For me, it didn’t happen immediately. But, as mentioned earlier, in six weeks I received over 32,600 views and my swap donor came forward. He wasn’t a match, but the transplant center helped us become part of a chain and I received my kidney.  

People often ask how I found my donor so quickly. I used lots of creative ideas that people often don’t think of. I had newspaper articles and an alumni spotlight written, participated in podcasts, tv spots, did an email blast, sat at event tables, and used social media to name a few. Many people host awareness events and participate in local events during which they carry signs with their info.  

The best strategy was word of mouth. Any time that someone asked how I was, I told them my elevator pitch [extremely short introduction making a part or two and a connection]. It seemed that for six weeks I talked about my need for a kidney every time I had the opportunity. All these methods led me to finding my kidney very quickly. I’d like to help you to do the same for finding yours. 

In the past two years, I’ve coached numerous patients who have received a living donor kidney. My clients seem to struggle with the steps needed to build their site themselves. They need help with writing and telling their story.  

To this end we formed Kidney Stories Toastmasters, Kidney Stories Toastmasters Club #7979708 (, which just celebrated its first birthday. Toastmasters is the perfect place to learn the public speaking and advocacy skills needed to develop and share your story. We have meetings on the 1st and 3rd Sunday night of the month. Our members include a wide variety of people from the kidney community including professionals, advocates, caregivers, patients, recipients, and donors.  

At each meeting, we have a featured speaker that tells their personal kidney story of hope and inspiration. We give each person an opportunity to update the group on their challenges and accomplishments. We share strategies for finding your living donor.  

For many people suffering with CKD which has ultimately led to ESRD, a living kidney transplant is often your best treatment option. A deceased donor requires a longer wait time and doesn’t offer the longevity that a living kidney offers. Finding a living kidney may seem difficult but it is not impossible. With tools such as TGSE and a good kidney coach, you should be able to find your living kidney donor and be back to living your best life in the shortest time possible. If I can be of further help, I’m here for you.