Daryl’s Story: Forever Grateful

Organ recipient Daryl sharing his story

There was a time years ago when I was living life to the fullest; I worked aboard cruise ships as a cruise director, organizing the ship’s entertainment and traveling all over the world. I had a good time doing it and helped others have a good time. After about 12 years I left the ships and worked from the cruise line corporate office again, traveling around the world and training travel agents on the cruise line product. I was living my dream, and having the time of my life!

I’m also a veteran and served in the U.S. Navy. In 2002, I went to sign up for medical coverage at the Veteran’s Administration Medical Center in West Palm Beach, FL, and I was diagnosed with the Hepatitis C virus after routine blood screening. Hepatitis C is a virus that attacks and destroys the liver, among other things. Hep C destroys the liver without one even realizing it.  At first, I didn’t believe the doctors. I didn’t have any symptoms of being sick, I didn’t even have a headache! Unfortunately, Hep C can lay dormant in your body for up to 20 years with no symptoms.

PSA: If you were born between 1945 and 1965, it’s a good idea to get tested. According to the CDC, 1 out of 30 baby boomers is infected with this virus.

In 2002, there was only one treatment available for Hepatitis C, and it was not very successful. The treatment had some serious side effects, both physically and mentally.

When I tried the treatment, it did not work for me. My doctors continued to monitor me closely because they knew that Hep C could also cause liver cancer. Fortunately, liver cancer could be cured if caught in time.

The condition of my liver did continue to deteriorate, and I was diagnosed with liver cancer after about 10 years. The cancer was cured through a process called liver ablation, which was a microwave beam aimed at the tumor to burn the tumor. At that time my doctors began to talk to me about a liver transplant, and thus began a long process of getting on the liver transplant list. It is not easy, and it’s not automatic! There was a year or more of testing to qualify for the list. First and foremost, I had to have a support person and support system in place. They emphasized, “you cannot do this alone,” and I tell you, you can’t go through a transplant by yourself!

There were psychological tests and physical tests. They find out exactly what kind of shape your body is in, from teeth, feet, and eyes. There were financial evaluations and evaluations of your living conditions for both you and your support person. The biggest question about your support person is, “is this person going to be around for the long haul?” Qualifying to get on the transplant list was not a piece of cake!

During the time of going through the evaluations, my health began to fail and I began to get sick. I lost weight, my energy level dropped, and I had to stop driving. I had returned to college, but I had to leave school because I just didn’t have the energy to keep up. I began to miss too many classes because I was sick in bed.  I was having cramping and stomach problems, I was going to the VA hospital quite frequently to have fluid drawn off my stomach, usually up to 8 liters! Imagine four 2-liter bottles. I wasn’t very active, because I just didn’t have the energy to do anything.

Also at this time, I was traveling back and forth to Richmond, VA for tests and evaluation. I was getting a transplant through the VA, and the VA used Virginia Commonwealth University as the transplant hospital.

On one particular occasion, I went up to Richmond for what I thought was just an MRI and my VA nurse practitioner says, “I’m going to admit you to the hospital!”  I argued with her for 20 minutes I don’t have time to be in the hospital, I have things to do! Finally, she said to me, “You don’t understand how sick you are. I need to be able to monitor you 24 hours a day.” That got my attention!

I was admitted to the hospital and three days later, I received a liver transplant!

And what a blessing that was, it was my gift from God. I was not standing on death’s doorstep, I was at the door and ready to ring the bell and God said NO! Not yet, I have something else for you to do!

Unfortunately, the biggest hurdle wasn’t over. During the liver transplant surgery, my kidneys shut down, and I was never able to recover. I ended up on dialysis for about a year and a half. I had a 4-hour treatment each time, three days a week. And the 4-hour treatment could easily end up being 5 hours, considering preparation time and before and after treatment.

When I completed dialysis treatments, sometimes I was able to go home and enjoy the rest of my day — but most days, I had to go to bed or lay down. On my off days from dialysis, I didn’t have the energy to do very much, either! My body was just weak from the process. During my liver transplant, I had lost about 60 pounds, so I was trying to get those pounds back, and there was some conflict with dialysis.  Dialysis works by establishing your base weight. Once that’s established, everything over your base weight is considered fluid and needs to be removed from your body. And in my case, I was gaining weight but they weren’t giving me credit for it. So, they ended up pulling too much fluid from me. I was constantly fighting the discomfort of having cramps and weakness due to dehydration. I knew that I had to go to dialysis if I wanted to live, but I felt like I was going to dialysis only to keep myself alive so that I could go back to dialysis!

In 2016, I received the final gift of this long journey.

When I received a kidney transplant, my life changed almost immediately!

My energy level returned, I became active again, I got back those 4 to 5 hours of being in the chair! My appetite returned, I was driving again, and I was enjoying life in a way I hadn’t been able to.  I could freely travel again. Medical technology has advanced to the degree that there is now a cure for Hepatitis C, and I am now free of the virus. I am once again a productive member of society. I returned to college where I’m studying jnterdisciplinary studies with a focus on mass communications.

Let’s take a minute to think about the power of this transformation. Because someone thought to donate their organs, a total stranger was able to have a second — or third — chance at living. I am forever grateful!

In 2018 I enjoyed my first Transplant Games of America. I call the Games a mini olympics; there are track and field events, swimming, cycling, golf, and basketball —  an entire host of events! The Games have grown into an event that brings transplant recipients and donor families together. As a transplant recipient you get to show the world that there is life after transplant and you are living your second life to the fullest. As a donor family, you may not meet the person that has your loved one’s organ, but you get the chance to see how donation changes lives (and it certainly changed mine).

I’d like to close here with a short passage from the letter I wrote to my donor family:

The transplant has tremendously improved my health and quality of life. I have once again become a productive member of society. One of my greatest joys now comes in the volunteer work that I do with North Carolina Transplant Athletes and Donate Life. You have given me a second chance in life. I hope to live a life worthy of the priceless gift of life I have received. And I hope you have been able to take some small comfort in your donation decision.