Sharing Hope with Strangers: Joanna’s Story

Ambassador Joanna McCray received a life-changing kidney transplant in June 2018, one month after she started fundraising with Help Hope Live. This is her story.

Tell us about your journey to transplant.

In 2013, I was diagnosed with kidney disease.

Before then, I worked in insurance, and my days included waking up at 6 a.m. and working from 7:30 a.m. to 3 p.m. I was always a homebody, so I worked from home when possible. In my downtime, I pursued my education, went to church, and did a lot of reading and cooking.

After my diagnosis, I went on dialysis immediately. I continued to receive dialysis from home for 4.5 years for 9 hours every night.

I didn’t let that challenge bring my life to a stop: I continued to pursue my education and got a degree in health care.

I joined the transplant waiting list at multiple hospitals. I had some dry runs where I received a call and got through stages of preparation before finding out the kidney would not be the right match for me.

When me and my son and caregiver, Dwayne, were first at Duke discussing the process of being listed for transplant, a financial coordinator was coming in to talk to us about the transplant journey ahead: it would involve a 4-hour trip if we got the call and associated medical travel expenses.

In her office, on the wall was a photo collage. On that collage, one of the people pictured was Kim, an elementary school teacher who was my neighbor in Miami.

At that moment, me and Dwayne looked at each other and felt it was a sign.

He said to the financial coordinator, “We have a feeling mom will be getting a kidney at Duke. We will deal with the finances and the medical travel however we need to, because this is our sign.”

In June 2018, a few months later, I got the call from Duke.

Me and Dwayne didn’t even stop for gas on that 4-hour drive.

They took me to the back, and I said to myself, “This is really going to happen.” The medical team said to me, “Yes, Ms. McCray—it is really going to happen!”

And then it was tears, and taking off my jewelry, and getting prepped for surgery.

My son was right there waiting for me. The amazing thing is, during the time that I was getting my kidney transplant, he got calls from the two other hospitals where I was listed. That day, our wait went from no kidneys to four kidneys.

What does your life and health look like today?

My physical health is great. Two years ago, my doctor said to me, “Joanna, I should be doctor of the year. All these years, you’ve been doing great!”

In part, I attribute my good health pre-transplant and post-transplant to being very actively involved in my own health and safety.

Getting my degree in health care, I knew my stuff, and I have remained directly involved in my lab work, maintenance, testing, and every aspect of my recovery. I believe you need to be a strong self-advocate. I exercise regularly and cook my own food.

I wore gloves when I was anywhere in public for the first 4 years post-transplant. I wouldn’t touch a package or doorknob. I didn’t even go into my community again or go to the grocery store in person until 11 months after my transplant.

I continue to take medications every morning and every night. For the first few years after transplant, I had to return to Duke for follow-up appointments every 6 months. Now I am able to receive virtual appointments with in-person follow-up care only every few years.

Living with a functioning kidney post-transplant has really helped me, mentally and physically.

I always believed in God, and I never complained about doing dialysis every night for those 4.5 years. Now, I have gotten even closer to God.

I believe God is giving me another chance to be the person I am meant to be.

I continue to be involved in my church, and my day is filled up with attending meetings for volunteer opportunities. I am not working, so I have plenty of time to give to organizations like Help Hope Live that support the kidney transplant process and community.

Why did you have to start fundraising?

Unfortunately, I was laid off at the time I was diagnosed with kidney disease, which meant that I no longer qualified for insurance through my workplace. I qualified for Medicare instead, and that’s when I began to encounter the financial burden that would come with the journey.

The “patient responsibility” (out-of-pocket costs) associated with my transplant listing at Duke included 4 hours of travel each way for myself and my son and caregiver. That would typically require renting a vehicle, paying for gas and food, and hotel lodging.

Over the 5 years I spent making those regular trips to Duke, I would estimate the total was between $3,000 and $4,000 out of pocket. My team at Duke introduced me to Help Hope Live.

I had started fundraising with GoFundMe, but once I found Help Hope Live, I knew that would be my only fundraising choice from then on.

I made the switch because Help Hope Live felt like they had a more personal connection to me and to my transplant need. Their team was invested in helping me. I also felt the Help Hope Live team would give me more tools that would help me learn about fundraising.

Today, I am a proud Ambassador for Help Hope Live, because it changed my life.

How did your community step up to help in your time of need?

I was a caregiver for my mom before she passed away, and after that, it took some convincing from Dwayne before I relocated from Miami to South Carolina where he lived with his family. My father told me, “You need to go be with your grandkids.”

Even though I left Miami 20 years ago, that Miami community came together for me.

I got a lot of help from them. Once they learned I would need a transplant, everyone I grew up with spread the word about my fundraising campaign.

I still remember times my son sat at Duke with me and said to me, “You do what you need to do for your health, mom, and I’ll handle everything else.” He is my only son and was so great as a caregiver and support for me during this journey.

He was the one who posted Updates on my Campaign Page and on social media platforms helping to keep our communities involved with my journey both before and after transplant. I thank him so much for that.

Everyone loved following along with my story and supported me.

I am grateful to Sgt. Major Howard Brown from my mom’s side of the family, who helped me during that time and has continued to support me through to today, as well as the McCray family and so many friends and loved ones. They provided both emotional and financial support.

The mayor of Manning, South Carolina, Major Julia Nelson, also helped me with guidance before and after my transplant – she is a transplant recipient herself.

Just yesterday, a memory popped up on Facebook from 3 years ago. At the time, I was 4 years post-transplant. So many people saw the memory and responded thinking it was a new post. They said, “You look great! You look fabulous!” And I wanted to tell them, “Yes, but you should see me NOW!”

I have come a long way, and they have been a part of the journey from the start.

June 12 will be 7 years post-transplant for me, and it just happens to also be my 50-year class reunion in Miami! I can’t attend in person this time, but I am so grateful to stay connected.

Getting a chance to share your story is one of the best things about fundraising.

The whole family is connected to my journey, too. My granddaughters Chardonnay and Briahnna are now 30 and 28 years old, and my grandson William is 17.

William was 10 years old when I got my kidney. We stopped by on the way home, and he said, “Grandma, you got your kidney!” He even came to Duke and pushed me around in a wheelchair pre-transplant. He still remembers that memory.

How do you make a difference as a Help Hope Live Ambassador?

I am so happy that I became an Ambassador—volunteering and talking about Help Hope Live has become a joy of my life. It brings tears of joy to my eyes to talk about!

Whenever I encounter someone on dialysis, the first thing I ask them is, “Are you listed for transplant?” And then I ask, “Have you heard of the charity Help Hope Live?”

I always tell people that I truly think Help Hope Live is a better organization for fundraising than GoFundMe. I’ve made so many connections, and many people I’ve talked to have become clients of Help Hope Live because of me.

I have brought baskets of brochures and bracelets to Duke to help share with other kidney transplant candidates and recipients.

Two years ago, I was in the Duke lobby waiting for an appointment. Something in my heart told me to sit near those baskets of Help Hope Live materials instead of where I was sitting.

As I moved over, a couple walked in. They looked at the materials and asked me whether I knew the organization and about my transplant experience with Duke.

A lady across the way from us said, “I got a transplant, too—can I get one of those brochures?”

Just sitting there in the lobby on that one day, so many people got to know me, my story, and Help Hope Live. As I was called back to my appointment, my son said, “I’ll take it from here, mom.”

I’ll be bringing more baskets when I return for my next appointment at Duke next year.

Years ago, I started leaving Guestbook messages for other Help Hope Live transplant clients. I wanted to be able to say to them, “I’ve been there—I’ve gotten my transplant, and I’m excited for what is coming next in your life.”

I know what it takes and how long that wait can be.

I want to help people if I can, whether it’s encouragement or info on how to get patient assistance and afford their medications.

Even though kidney disease runs on both sides of my family, I didn’t get that guidance on how to stay healthy, go through dialysis, and take care of yourself post-transplant.

When I went through this process, I had nobody to talk to who had experienced it. That’s who I want to be for someone else.

I believe you can be an Ambassador anywhere. Even if I am standing in line in the grocery store or at church, if I start a conversation, I have my business cards with Help Hope Live ready to go.