MEET TEAM MEMBER JAY COOK

Welcome to our first installment of “Meet the Team Member,” a series of blogs featuring members of Team North Carolina. We hope you enjoy reading more about us, our transplant stories and how we became involved with the Transplant Games.

Team Member: Jay Cook
Member since: 2017
First Transplant Games: Upcoming Games in 2018, Salt Lake City
Residence: Kannapolis, NC
Age: 29
Transplant connection: Received double lung transplant 7/2/2016
Transplant center: Duke University Hospital

Why did you need a double lung transplant transplant?
I have Cystic Fibrosis, and my lungs became progressively worse to the point that I needed a transplant.

How was your life up until then?
The first fifteen years of my life were very normal. Apart from daily breathing treatments and medications, I was extremely active. My junior year of high school was the first time I was hospitalized. I had developed a cough, which was a sign of likely infection. I was only in the hospital overnight, but I had to do a couple months of IV antibiotics.

My sophomore year of college was the second time I was hospitalized with another lung infection. My coughing had gotten worse, especially after exertion. It was difficult for me to walk up stairs and steep inclines without coughing. The constant coughing was exhausting.

The years that followed were physically and mentally difficult. At times, the mental aspect of CF was harder than the physical. One day I was doing yard work and I couldn’t get my breath. I was again hospitalized and, for the first time, needed to be on oxygen. The next two years I needed six liters of oxygen continuously and I was in the hospital every two to three months for an average of two weeks each time.

When did transplant first come up?
The thought of a transplant didn’t come up until about 14-15 months after the time I became sick and required supplemental oxygen. But because at that time I was culturing a certain fungus in my lungs, my doctor was unsure how that would affect a new set of lungs, and worried it might damage them, too. However, after speaking with his colleagues, my doctor changed his mind.

How was the evaluation process?
I went through the evaluation process at Duke and relocated not long after that. Before that I was receiving my care at Carolinas Medical Center in Charlotte. First of all, I completed about 30 sessions of pulmonary rehab (aka “boot camp,”) which I had never even heard of before coming to Duke. After 23 sessions of rehab it took just over a week to get listed and I was transplanted the day after that.

Tell us about your support system during transplant:
My dad was my primary caregiver during transplant. He basically did everything that I needed. Whether it was driving me to rehab or appointments, fixing meals, or helping me take showers, he was always there for me.

My mom and brother would come up some on the weekends, or whenever they could get off of work. My mom was my primary caregiver before relocating to Durham. What she did in the years prior to transplant was beyond incredible. After long days at work, she would spend hours helping me with things that I wasn’t capable of doing on my own. I felt bad when she would work all day and then have to come home and take care of me, but she never complained and was always willing to help.

Burke, my brother, would come visit me usually once a week before I relocated to Durham. Even though we are six years apart, he is my best friend, and it was difficult not being able to do things with him.

My grandfather wrote me a letter every day. Those letters provided me with a great amount of emotional support.

If you could describe your transplant experience in three words, what would they be?
Necessary, overwhelming, and life-changing.

Explain that:
The transplant was necessary because without it I wouldn’t be alive. The surgeon told my parents that I wouldn’t have lived past the summer if I didn’t have the transplant.

The transplant was overwhelming both pre- and post-transplant for a lot of reasons. Even with small amounts of exertion I would cough and become very fatigued. Also, being inundated with all the information about the transplant process was very overwhelming. There were many times that I questioned whether or not I would be able to effectively do all the responsibilities that are required of someone before and after a transplant.

Most of all, the transplant experience has been life-changing. Despite the hospitalizations and the extra responsibilities, I think everything that I’ve had to endure has made me stronger mentally and physically. After making it through the surgery and all the rehab sessions, I feel like there are very few things that I can’t overcome.

What has been the biggest challenge with your transplant?
Managing new responsibilities that have come up with transplant with and integrating them with my past interests and activities.

Taking medication comes with having CF. With the transplant, my medications have doubled, including insulin four times a day. This requires me to follow a strict regimen to keep my levels and blood sugar regulated.

Also, music is something that I really enjoy, particularly going to live concerts. But now it’s more of a hassle because of the timing of my medication. Being immune-suppressed increases also my chances of getting an infection, so I have to be more attentive when around people.

I also enjoyed swimming growing up. During the summer, I would swim almost every day. It was a great cardio workout. Now, because I have a weaker immune system, I don’t want to take a chance on getting sick from germs in the pools.

And finally, food! Being skinny is one of the characteristics of CF, as is a high-calorie diet. I considered eating a hobby. I would eat anything and everything, and I loved trying new foods. But because I now have diabetes I have to watch what I eat and follow a more strict diet.

What do you like to do for fun?
I like to listen to music, like I said, and go to the gym. Basketball is also something I have started to enjoy again after years of not playing. I played some form of organized basketball from 3rd grade through my sophomore year of high school and attended Davidson basketball camp every summer. Basketball has always felt natural and therapeutic to me. Along with music, basketball helps me filter out the negative aspects that tend to make their way into my everyday life.

What do you do for work?
I do not work currently. I earned a degree in Anthropology in 2010 from UNC-Charlotte. In 2013, I returned to pursue an accounting degree. My pursuit of the accounting degree was put on hold when I got sick in 2014.

I returned in the Fall of 2017, but I was forced to withdraw during the spring semester because of a hospitalization and subsequent appointments.

Tell us about your family:
I live with my dad, Benny, and my brother, Burke, in Kannapolis. My brother is 23 years old and he does not have CF. My mom, Jennifer, lives in Belmont, NC.

How did you first hear about Team North Carolina and the Transplant Games?
From a friend who had taken part in the Games and who is is on the team in another state.

What competitions would you like to take part in your first Transplant Games? What are you most excited about?
Basketball and team trivia. I’m excited about meeting and competing with others and learning about their experiences.

What are you looking forward to most while visiting Salt Lake?
Meeting and competing with others and learning about their transplant experiences. Traveling is something that has always interested me, but I haven’t had a lot of opportunities to travel.

If you could speak with your donor’s family, what would you tell them?
I would tell them that their loved one isn’t completely gone, but continues to live through me, and that we now share the same breath.

Health and happiness,

Laura P Smith, Team Co-Manager
Double Lung Recipient, 2014

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