Never giving up


Pre transplant. Bi pap machine, IV antibiotics. Jerry (the now) therapy dog.

Samantha and Ty Jameson are letting butterflies loose at their wedding.

Gazing out the window with a smile of relief and exuberance, Samantha Jameson releases butterflies back into the wild along with her new husband, Ty Jameson.

It’s their day, and filled with a room full of family and friends, the couple celebrates their picture-perfect wedding. As their old lives conclude and a new chapter is set to begin, they are well aware that every day won’t be a bed of roses.

They are ready for the fight that is bound to come. In fact, they welcome the challenge.

And why not? They just won the biggest fight imaginable — the fight to save Samantha’s life.

Samantha has been battling for the right to live since she was diagnosed with cystic fibrosis at the age of 4. According to the Cystic Fibrosis Foundation, cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. The expected life span for someone with CF is 30 years, according to the Center for Disease Control.

Samantha admitted that her life was a challenge in the beginning. She didn’t understand the severity of CF and she always felt like her parents were over-protective. She often questioned why she was the only one who had to go inside and do breathing treatments when she was in elementary school.

Sleepovers were another nightmare Samantha couldn’t fathom. She always had to take her medications during meal time and, once again, had to take timeouts to do breathing treatments.

As the years progressed, Samantha learned to cope with her CF.

In fact, her condition slightly improved as she dealt with the rigorous chore of being a high-school student. She was active, participating in different sports while also becoming a cheerleader.

After graduating from Manchester High School in Adams County, Samantha went to Southern State Community College where she became a pharmacy technician in 2008. However, she wasn’t able to begin sending out resumes as she began feeling ill again in 2009.

Unlike her previous bouts, this fight was different. Simple breathing treatments were no longer providing relief, so Samantha underwent a lung biopsy, which revealed a rare bacteria that was “decimating” her lungs. Her latest development wasn’t good news and only left Samantha with one option — she needed a double-lung transplant or death would be all but a certainty.

“Faced with the choice of getting the transplant or just dying, not knowing how long it would take or how quick this was going to ravage my lungs, I had to get the transplant to keep fighting,” Samantha said.

Samantha went to her first transplant evaluation in July 2010 at the Cleveland Clinic.

“I remember being a nervous wreck,” Samantha said. “I went into the bathroom before the appointment. I went into the stall and just prayed that they would wait a little bit longer to list me, that they would wait a little bit longer because I knew I wasn’t ready mentally.”

During her appointment, Samantha got her wish as her transplant doctor decided to delay the process of adding her name to the donor list. According to Samantha, the doctor didn’t think her body was ready for a transplant of that magnitude.

In January 2011, Samantha was finally ready.

“I felt really excited and really ready, and I knew then that this was going to change my whole entire life,” Samantha said. “I remember them telling us to pack a bag, so we could just leave. We wouldn’t have to worry about packing anything.”

With her bag packed and her spirits high, Samantha was ready for her transplant.

But the phone never rang.

Eventually, life just went on and six months later, she was seen wearing that T-shirt she had buried in a suitcase in the bottom of her closet.

Now, as a 21 year old, Samantha was trying to balance her love life along with managing her sickness. One of those was about to give and Samantha was too “stubborn” to let her CF get the best of her.

After dating a guy for four years and getting engaged early in 2011, Samantha said her fiancé decided he wasn’t happy. Two weeks before Christmas, he left Samantha, which forced her to move back into her parent’s house.

“I think a big part of it was that I was getting sicker and I don’t think he could handle that,” Samantha said.

The breakup sent Samantha into a tailspin.

“I was really, really depressed because for four years of my life, I only knew this person,” Samantha said. “I thought I was going to spend the rest of my life with this person, how do I go on and pretend that they are not a part of my life anymore? How was I supposed to wake up and start a whole new day? I couldn’t work because I was waiting for a transplant. My whole life was just turned upside down.

“I had lost a ton of weight. I was super tiny, like 88 pounds tiny. It’s crazy to think one person can make you not want to wake up in the morning. Not being in that relationship anymore, I would wake up and wished I hadn’t woken up. I had never been that depressed in my entire life.”

Samantha began seeing a therapist after the breakup. She knew she didn’t want to pursue another relationship but if she did, would anyone be interested in a girl who could potentially be terminally ill?

“I knew I was sick and no one would want to date me because they were not going to want to take on this burden of someone who might possibly die,” Samantha said. “Who could love me in that situation? It was easier for me to figure out what was going to make me happy and to separate myself from the life I had and to start all over again.”

In the summer of 2012, Samantha was hanging out with old friends while discovering the carefree lifestyle she had been longing for since her illness had taken any chance of a normal lifestyle.

Although her lungs were deteriorating, she relied on her friends like never before and they never disappointed her.

“I had friends that would piggy-back me from the parking lot to the concert because I didn’t have the lung capacity to walk that far,” Samantha said.

In August of 2012, Samantha finally found a purpose for her life. She contacted Life Center out of Cincinnati and volunteered with the organization to tell her story.

Life Center, which is an “Organ Donor Network,” according to the website, gave Samantha the platform to help more individuals become registered organ donors.

“I got involved with them and that’s when I feel like I found my purpose,” Samantha said. “In my mind, I knew this is what I was supposed to do with my life because it was so rewarding to volunteer and help out at events, and to speak at schools.”

Also in 2012, as part of her benefit work, Samantha was helping out at a cancer benefit when she ran into Ty Jameson. According to Samantha, Ty was shirtless, barefoot and had his hair past his shoulders, to go along with a massive beard. He was part of the band that was playing at the benefit.

Samantha had known Ty since she was 16 years old when she dated a guitarist in another band Ty had been a part of — one of several bands.

When Samantha left the benefit, she decided to contact Ty via Facebook.

“That’s how (my generation) makes contact, instead of being brave and saying, ‘Hey, can I have your number?’ We message them on Facebook,” Samantha said. “We had been Facebook friends, so I just messaged him and said, ‘Hey, it was great to see you, we should hang out.’”

Samantha and Ty started seeing each other unconventionally. Dinner and a movie never appeared on the menu. Instead they went to parties or concerts, with Samantha often sitting in the crowd watching Ty’s band performing on stage.

The two began building a unique relationship, despite Ty’s tour schedule, which often kept him away from home for weeks on end. Samantha was warned not to fall in love with Ty because of his free-spirit attitude. However, it was a warning she wasn’t about to heed too.

The more Samantha learned about Ty’s carefree attitude, the more her attraction rose. Samantha and Ty knew early on they didn’t want a relationship but they enjoyed being together. However, it still didn’t stop Samantha for falling in love with Ty. She just knew she couldn’t utter those earth-shattering three-little words.

“There was a point in time where I fell in love with him,” Samantha said. “But I didn’t want to be that creepy person that loves someone that didn’t love them back, so I never told him.”

And in July 2013, Ty broke the news to Samantha that shook her world. Ty told Samantha that he was moving to St. John in the Virgin Islands. Ty was offered a gig to play in a band five nights a week.

“That’s living the dream,” Samantha said. “That’s what people want to do with their lives, not have an actual job.”

A part of Samantha was jealous because Ty had the ability to leave on a whim. Samantha, on the other hand, was tied down, not by work or family, but by a transplant that might never happen. Ty never knew how sick Samantha was because she hid that part of her life from him. The medications, the breathing treatments, the hospital stays — Samantha wasn’t about to reveal the true nature of her illness to Ty.

“When you’re not around someone all day, every day, it’s easy to hide how sick you are,” Samantha said.

Ty left in August 2013. Just before he left, Samantha gave him an envelope full of notes she had written about him. She had basically told him she loved him without actually uttering those three-little words.

Not expecting to ever see him again, Samantha attempted to once again move on with her life. At this point in her life, she was using 21-23 percent of her lung capacity. There were times she should have been on oxygen but wasn’t because “I’m super stubborn,” she said.

While she was continuing to deal with her illness, Samantha received a call from Ty one night in September from what she called an “island” phone. That conversation sparked a series of phone calls that took place every day, typically after Ty returned home from his nightly gigs.

Then, in October, Ty told Samantha he felt like something was missing and he finally said the three-little words Samantha had been longing to hear.

“He was the first to say I love you,” Samantha said. “My heart was so happy that he said it, but a part of me was like why do you have to say it when you’re 2,000 miles away?”

Filled with emotions, Samantha continued to hide her illness from Ty.

“I didn’t know how much time I had, but I didn’t want to tell him that because I didn’t want him to feel like he had to come back because of me,” Samantha said. “I wanted him to live out that dream of playing music and living on an island.”

Regardless of Samantha’s reasoning, things changed in January 2014. Samantha caught the flu, which was devastating for her lungs because thy were already damaged, so it was hard for her lungs to fight off the infection. Despite the setback, Samantha continued to be coy with Ty until the end of February and then she was admitted to the hospital.

“I was really upset one night and I was really scared,” Samantha said. “I couldn’t breathe and I finally told him. I told him I wasn’t doing so good and I didn’t know what was going to happen or how much time I had.”

Samantha had been waiting on a transplant for three years and time was running out. Upon hearing the news, Ty told Samantha he was coming home to take care of her.

On March 20, 2014, Samantha looked out the window and saw a glimpse of a strange man standing on her parent’s door step. She opened the door and Ty was standing there holding roses.

“I was just in shock,” Samantha said. “I couldn’t look at him. I said, ‘Why are you here?’ He said,’ I can play music at anytime in my life but this is where I need to be, I need to take care of you.’

“I don’t know if he knew what he was getting himself into. I was a very independent person, but I was too sick to be independent anymore. I became totally dependent.”

Editor’s note — This is part one of a two-part series. The second part will run in the Sunday, May 21, edition of the Community Common.

Reach Chris Slone at 740-353-3101, ext 1930, or on Twitter @crslone.