The moment we found out my Dad was getting a kidney. (One Year Later)

8.15.19 3:15pm One year. A full year. 365 days since my word truly changed. I’ve been thinking, was this day more impactful than the day of the surgery? Was it more important than March 19th when we launched the video with so much hope. All I know is that I remember. I remember the details of a few hours with such exactness. 

115; Mom & Guy arrived from North Carolina to St Louis. The reason for the visit was for an appointment with Barnes-Jewish Hospital the next day. Tiny back story: my Dad needed a kidney. He didn’t want to live on dialysis. I was going to do everything in my power to make it so he didn’t have to go through dialysis. I produced a video with Dane Iwata of my family members and myself talking about my Dad and also showing our life a little bit. My Dad was connected to Piedmont Hospital in Atlanta and they were the main people helping us with the kidney transplant process. In order to have a better chance to find a match by broadening our reach, my Dad decided he would try to be affiliated with Barnes-Jewish Hospital as well. 

His appointment was tomorrow in St Louis.  Even with the events that unfolded today he would still go to the appointment at Barnes. He would sit through the classes and see other people going through the same thing. He would see how much further in the process he was and how his understanding was a bit more. He would also see that these hospitals don’t mess around and if you don’t follow the rules then you don’t get a kidney. It was serious. 

For a family who laughs about everything to becoming a family with serious shit happening, it was an intense shift. In today’s moment, this was the biggest shift was for me.  I wanted to talk about what everyone was feeling, I wanted us all to open up and share what we were experiencing.  I was met with resistance. which now I know was simply others’ way of processing. Lesson that I learned here was a big one: not everyone processes like me and knowing that helps me acknowledge that people still cared they just had different ways of showing it. I am a person who processes everything (good, silly, hard, exciting, sad) externally. It’s how I problem solve. It’s my own way of coping. 

There’s no guidebook for how this will all play out. For me, I wanted to talk to people who had gone through this process before and somehow I knew three people who had either received or donated a kidney. I was able to listen to their experiences and prepare for the rollercoaster of emotions I was about to feel. 

One year later, I’m not sure I truly understood the impact this would have on my life. I definitely didn’t expect how much of an impact it would have on those around me. To this day, many times a week I am asked about my family and have people checking in on my Dad to see how he’s doing.  

A year ago today, we were preparing as a family for Guy to do what he needed to do to be a part of Barnes-Jewish Hospital. We were waiting to hear any news from anyone about what was going to happen next. The week prior we knew that someone was going through the big testing days in Atlanta. We weren’t supposed to know this information but we hung to it and put all of our thoughts into having a good outcome. 

I am a realist that errors on the side of optimism. Meaning, I am objective about all outcomes and I want to talk them out. What happens if we don’t get a kidney, what would you like to do? What is our plan for dialysis? What would be your preferred way to die, I don’t want you to suffer. I had these conversations with my dad and hoped that by having them I was helping in some way. I wanted the outcome we got, but I also wanted to be realistic, run the numbers and focus on what could happen. 

My focus last summer was my family. My focus last summer was, plan for all outcomes. I wanted to talk it out, to have a family discussion. It was impossible for me to do the routine: acknowledge, pick yourself up, stuff problems down, remember there are people worse off, and move forward with one objective: to keep going. It was impossible for me to not break down in tears every day. In March we released the video and for a moment (maybe a week or two) we were gaining traction and making an impact and then it faded. I struggled with the idea that we weren’t doing enough. I pleaded with the universe to make family and friends understand how much this meant to my family and to somehow convince people to help more. I was angry and frustrated that people couldn’t share a post on FB and it was so hard for me to focus on the fact that some people were helping, because to me it wasn’t enough. 

Until 3:15pm August 15th, 2018. (the message sat in my inbox for 15 minutes before I saw it) 

I received a Facebook message. My heart started to race. My hands were trembling. My eyes filled with tears and the words are still a bit blurry of what exactly I said. I looked around the room and saw my Mom and sister standing and my Dad sitting on the couch. The amount of disbelief, hope, awe and happiness were flooding through me. I said hold on, oh my god, and I started to read. 

The message read: Jenna, You can give your Dad good news. 

I couldn’t read the rest. Mom snatched the phone from my hands and read the rest of the message. I couldn’t hold back the tears. I couldn’t believe this was actually happening. This was really going to happen. We did it. We found a match. It wasn’t me. It wasn’t family. It wasn’t even someone who knew my Dad at all. We had a hero in a person so unexpected. 

Mom finished reading the message that detailed that surgery was happening in 37 days. Then my Dad said one word. If I close my eyes I can see him sitting on the couch, unsure what to say or how to say anything. He uttered one word in an exhale, he said “WOW.” It felt like I could breathe. We still had 37 more days and a lot can happen in 37 days, but the amount of hope we could feel was live changing. 

Ed Whealon decided to do the unimaginable he had decided to save a life. I try to think about all of the events leading to the moment that Ed came into my life. In 2015 Ed emailed me to book a photo session with me. He knew my style of photos and wanted me to document his family and their routine. We made silly pancakes for dinner and read books with his wife and two daughters. The girls and I hit it off and I knew that this family would be one of my favorites, I had no idea how or why. I had photographed Ed and his family a total of 3 times before we launched the video. Three one-hour sessions of time spent with me, three years of following me on social media. Ed told me that when he saw the video he knew what he needed to do and the day we launched the video, he started the process of trying to be a donor. He decided to do this because he is an incredible human. His generosity had very little to do with me, my job was to make the connection. It wasn’t even a question to him. In less than a moment he knew what he was called to do. 

Before this moment he had kept us up to date a handful of times explaining that he was attempting to see if he was a match. Now he was letting us know that he was a match and that the transplant was scheduled for September 21st, 2018. This was the first moment that it sank in that our sliver of hope was actually a big ass beacon. 

Once I stopped crying my mind immediately went to all the things we need to do next. First thing that happened was our weekly family video chat. My aunts (Guy’s sisters), my parents and I had call every Wednesday since February. We did what  Everyone was nervous and my Dad looked at me and said “you can tell them”. There is video of the moment that we started to tell the family. First with the aunts on the video chat. Then with our brother and cousins who had helped get us here. I think my holy-shit moment is still sinking in a year later. Look at what we had done. It was nothing short of miraculous. Ed Whealon was here to give my Dad and my family more time and a chance to keep going. 

A few weeks later I asked Ed so many questions. I wanted to pick his brain and figure out what made him decide to do this. To him, the decision was made the first time he watched the video. Something clicked and he knew what he needed to do. I asked more questions, his wife Lisa asked him too. What would make a man give an organ to a stranger? What would make him risk his life for someone he’d never met? He has a beautiful wife and two hilarious little girls at home with the dogs. I had to ask, because it was eating at me inside, one final question. It went something like “ok, I have one last question and I want you to know I still want you to do this, I just have to know: WHY? Why my Dad? Why everything. To which he responded with, “Why not?!” 

His certainty in his answer was something that to this day blows me away. No question you could ask him or perspective would have convinced him not to do this. To him, it could have very well been him needing the kidney. He had two so why wouldn’t he give one to someone who needed it? What kind of example did he want to lead for his daughters and his family. There was no question left off the table, between myself, his wife and his family we covered them all. 

Ed Whealon is the definition of a hero. He changed so many lives with one decision. He inspires others to say “why not” and mean it. His daughters tell their classmates their dad is a hero and they truly have every right to brag. 

The anniversary of the transplant is coming up in 37 days and I may share about it too, but right now on this day is when my life changed in a very deep way. It’s strange to look back and think Wow it’s been a year already? and feel like it’s only been a year at the same time. So much has changed in such a short amount of time. As myself and my family process everything that has happened I am blown away by how truly remarkable this has been. I will never be able to repay the kindness but what I hope to do is continue to live my life with purpose to make as much of an impact as I can in a positive way. 

We all learned a lot about kidneys and the Living Donor program last year. We shared the information then and I will share information here. Over 100,000 people are on the organ transplant waitlist. 1 in 9 Americans have kidney disease some without even knowing it (26 million Americans. Being tested to find out if you are a match to donate your kidney, may end up saving your life. Those on the waitlist can wait up to 7 years to a deceased donor, finding a Living Donor is the best chance for most. Fun Fact: you only need one kidney, so share your spare. 

For more information about Kidney Disease and the Living Donor Program visit: https://www.kidney.org/ If you aren’t ready to donate a Kidney, there’s a spot directly on the site to donate to the National Kidney Foundation and every dollar helps. You could impact someones life in a good way today, so like Ed would say: Why Not?