MEET TEAM MEMBER DARRYL ELLIS
Welcome to the second installment of “Meet the Team Member,” a series of blogs featuring members of the North Carolina Transplant Athletes. We hope you enjoy reading more about us, our transplant stories and how we became involved with the Transplant Games.
Team Member: Darryl Ellis
Member since: 2017
First Transplant Games: Upcoming Games in 2018, Salt Lake City
Residence: Winston-Salem, NC
Age: 61
Transplant connection: Liver (2015) and kidney transplants (2016)
Transplant center: Virginia Commonwealth University, Richmond, VA
Why did you need a liver transplant? Why did you then need a kidney?
Statistics show that 1 out of 30 Baby Boomers have the Hepatitis C Virus. I was the “1” in my group of 30. I was diagnosed with the Hepatitis C virus in 2001. At the time, there was only one treatment, and it was not very successful. Hepatitis C attacks the liver.
During the liver transplant surgery, my kidneys shut down and function didn’t come back as sometimes happens. It’s my understanding that my blood pressure fell too low for too long a period of time.
How was your life up until then?
I lived a wonderful life up to the point of transplant. I was very active in life, traveled a great deal, and had a great social life. I had the greatest job in the world: I worked in the cruise industry. I worked aboard cruise ships for about 13 years and had been promoted to Cruise Director. As Director, I was in charge of all entertainment, social and recreational activities on the cruise ship. I left the ships and worked traveling around for the corporate office. I escorted travel agents of seminars at sea, and did weekend trainings in Miami.
When did transplant first come up?
My doctors knew that Hepatitis C could also lead to liver cancer. Knowing that liver cancer can be cured if caught in time, my doctors continued to monitor me. When I did get liver cancer, it was cured with a liver ablation. However, the virus continued to attack my liver and at that point my doctors began to talk about a liver transplant. This was around 2012.
How was the evaluation process?
The evaluation process was a long, very complete, process. I would say about a year long. And I do understand; in my mind I saw that they wanted to know that I was going to appreciate receiving an organ and take care of it. There were medical evaluations, psychological evaluations, financial evaluations.
I think it worthy to note here that I was put on the liver transplant list just 8 days before I had to have the transplant. I was very sick at that point – much sicker than I realized – and my Liver functions were shutting down. I was admitted to the hospital not knowing if a liver was available. By the grace of God, three days after being admitted, a liver became available.
The kidney transplant was a little bit different. The V.A. started the process for the liver transplant, but I initiated the process for the kidney transplant. Because I was Hepatitis C positive, I was able to accept a Hepatitis C positive kidney. I had already gone through most of the evaluation process during the liver evaluation, so the process was very short. And just a couple of weeks after being on the kidney transplant list, a kidney was found.
After I had the kidney for a little while, I was treated for the Hepatitis C virus. I am now also cured of Hepatitis C.
Tell us about your support system during transplant:
I had a very strong support system. It was one of the requirements in order to get on the liver transplant list. The center emphasized that you can’t do this by yourself, and it’s true, you can’t!
My girlfriend was the biggest part of my support system – and she stepped up in a way that I never would have imagined. My first cousin and I also became close. He lives two hours away, but every Saturday, I knew he was going to show up. Some Saturdays, we’d go out to a sidewalk cafe. Some Saturdays I could only lay around and talk some, sleep some. Other Saturdays, I could only sleep. But I knew he was going to be there.
My transplant was in Richmond, VA; my family came from West Palm Beach, FL, from Washington, DC, and from Shelby, NC. My girlfriend basically lived with me in Richmond for about five months after I got out of the hospital. During the couple of months I was in the hospital, she made frequent four-hour drives from Winston-Salem to Richmond. Many of my friends really rallied around me too!
If you could describe your transplant experience in three words, they would be:
Amazing, Grateful, and Re-Awakening
Explain that more:
It was “amazing” what the transplant did for my life; without the transplant, I would not be alive today! Just that simple!!! I went to the hospital for what I thought was an MRI, and my coordinator ended up admitting me (with some argument from me). Three days later, I was receiving a new liver. With the kidney transplant, the quality of my life improved by 1,000%! It was amazing how I was able to enjoy life again!!!
I was “grateful” because of all the effort everyone made to take care of me, especially the nurses. Coming out of surgery was difficult for me. But the nurses took care of me in a way that I had never seen before. It was like they knew my needs and before I could ask anything they were there for me.
It was “re-awakening” in the sense that I realized that I had a second chance at life, and even more so than before I was reminded that I had purpose to my life and needed to fulfill that purpose.
What has been the biggest challenge with your transplant?
The biggest challenge for me has been to have patience! I’m finally getting better now, but in the beginning, it was hard. I was so thrilled that my life was so much better. But I was feeling so much better that I wanted to jump right back into life as I knew it! I wanted to get back in the yard, do garden work, I wanted to get back on my motorcycle, to travel and run around. In the beginning, I overdid it and had a couple of setbacks.
What do you like to do for fun?
I like playing around in the yard with my flowers. And now I’m back to being able to handle the motorcycle without any problems, so I’m riding again. I can’t run up and down a basketball court easily anymore, so I’m trying to learn the game of golf…but I’m not doing so well!
What do you do for work?
I’m not working yet, but I do quite a bit of volunteering with Donate Life and LifeShare of the Carolinas. I have the opportunity to talk to the public about the importance of and the need for organ donation and I absolutely love it. It is my purpose now.
Tell us about your family:
I love my family and am very close with them, even though we are so many miles away from each other. Before the transplants, I saw them frequently because I lived on the move. That’s one of the things I miss now. I live with my girlfriend in Winston-Salem and am close with her family as well. Still very close with my Family in south Florida. I’m originally from Shelby, which is about 2 hours away, so I see them as much as possible.
I’m ready to travel again to places like DC, San Francisco, New York, because I miss hanging out with my family.
How did you first hear about Team North Carolina and the Transplant Games of America?
I heard about the Transplant Games while I was going through aftercare at my transplant center. I had in my mind to go to the Games as a sort of “free agent,” but the coordinator with Donate Life encouraged me to contact the NC team and become a part of them. I’m so happy she did! I have made some wonderful friends.
What competitions would you like to take part in your first Transplant Games? What are you most excited about?
I want to see if I have one more 100-meter run left in me. I’ll play basketball, volleyball, and I think do the long jump too. I’ll be a part of a couple of relay teams. I want to be very active.
I’m most excited to just be in the the atmosphere, to feel the energy and the spirit of all the people there.
What are you looking forward to most while visiting Salt Lake?
I think it’s going to be nice to visit the city of Salt Lake City, but I’m more interested in what goes on with the Transplant Games, and to meet as many people as possible in the transplant community. I hope to be able to talk to someone within the Games staff about becoming a more integral part of the Games. I would love to be a spokesman for the Games one day, to tell the public about the Games and what they are all about.
Do you know who your donors are?
I do not know who my donors are, but following the lead of others in LifeShare and Donate Life, I have written letters to the families of my donors.
If you could speak with your donor’s family, what would you tell them?
In my letters I spoke of how grateful I am that their love one chose to be a donor. I tried to share with them how I felt like it was my duty to take care of that organ and to live a life that their loved one would be proud of. I think that being an organ donor says something about what a special person they were, and I want to live a life that honors them.
Health and happiness,
Laura P Smith, Team Co-Manager
Double Lung Recipient, 2014