Organ Donation Gives Life

There is a saying that “Family is where life begins and love never ends,” and Jonathan Pierce, who just turned 29, is a good example of that.

Pierce of Rossiter was born six-weeks prematurely in 1989 to John and Mary Pierce. His family cared for him through early breathing issues, ear tubes and open heart surgery to close a hole in the wall between the upper chambers of the heart, all before his first birthday.

He had bone graft surgeries and dental surgeries when he was still small, and he was diagnosed with an allergy to the ultra violet light, both UVA and UVB.

Though the allergy seems skin-related, Pierce’s entire body was affected. By the time he was a teen, his liver was affected by porphyrins, or a substance in the body, that the liver would normally filter out. It was triggered by the UVA and UVB disorder.

“With this disorder, the porphyrins built up and built up, and destroyed the liver,” Pierce said. “At age 13, I went into liver failure.” This meant he went on the transplant list waiting for someone to be a match. The liver regenerates and can come from either a live or deceased donor.

He waited a long time and went through five years of treatments to stay alive. At age 18, the day came that he was given seven days to live. He made it to day nine when a liver was donated.

His illness came with a lot of complications. “My bile ducts in my GI tract were smaller and sludgier,” he said. “It was difficult to keep me alive during the process of finding me a liver. Medications to keep me alive while my liver was failing also destroyed my kidneys.”

Through organ donation, Pierce received a new liver in 2003.

His disease would also cause his new liver to work harder and perhaps die quicker if something wasn’t done to stop the porphyrin build up. Doctors agreed that the next step would be a bone marrow transplant to combat the issue.

The bone marrow transplant was done once and didn’t take. A stem cell implant was done next and failed. Then, t-cells and stem cells were transplanted, and that worked.

Pierce was lucky to find the perfect donor for the marrow and cells – his sister, Jaimie Hedrick. “My whole family all got tested. My sister is an identical match. It’s a blessing as we are only two years apart and this is unheard of.

Siblings have less than a quarter of a chance to match,” he said. They are so close in DNA make-up that they could almost be identical twins.

She was also the donor for his kidney transplant.

“My sister was in high school when this was happening to me. Never once did she show any waiver when she was by my side,” Pierce said.

“Donating marrow and cells to my brother was a ‘no brainer,’” Hedrick said. “It’s not going to hurt me, and it’s my brother. I had the opportunity to help; why wouldn’t I take it?”

The same is true for the kidney donation. “I was 22 when I donated the kidney,” she said. “He was 19 and had his whole life ahead of him…I never thought about it – of course I am going to do it. I know people think ‘You’re a hero!’ but I really I was given an opportunity to do it. I am sure if others had the opportunity, they would do it. How would you not save your brother?”

For Pierce, the situation couldn’t have worked out better. Because of their close DNA make up, “It was like the kidney was saying ‘Oh, I am back home!’” he said. “My body won’t reject it.” For his kidney, he doesn’t need to take any anti-rejection medications.

Though his story is a short synopsis of what he went though, there is much more. He contracted Epstein bar disease and had other complications throughout the years. Pierce had his spleen and cataracts removed, and his hips replaced.

“There were a lot of hard times,” Pierce said. “The thing that got me through was faith and family … and they still do as I was diagnosed with cancer last year…You can yell and scream at God or whomever you want, but you learn to assess the situation and go from there. It took me years to learn that.”

“Family and faith is one of the strongest things to anchor us to the ground…to wake up the next day to battle and deal with pain, blood work, injections and all that,” he said as he now receives chemotherapy for his cancer on a regular basis. “It takes family, friends and faith to move forward every day.”

“It’s inevitable to feel bad, but if you have those anchors (faith and family) you can rely on them and lean on them and ask for their help to push forward. They help me to live and continue to keep fighting. If it wasn’t for them, I would have given up a long time ago. I wouldn’t be here.”

“It puts things in perspective about what to be upset about and what not to be upset about,” Hedrick said. “Those little things that bother you during the day – they don’t matter.”

Pierce reminds every one of the importance of organ donation. “I believe organ donation is a really great thing. It not only is helping the person who is sick, but it also is helping the families of the person, giving them more time on Earth to be with loved ones, family and kids”

“You don’t have to be dead to donate a kidney, skin cells or liver,” he reminds us. “We should always strive to help people out. I pray that people would always say yes. We are meant to help people when we can.”

“You have the opportunity to allow someone to live longer and bless their life,” Hedrick added, noting that it’s been ten years since donating a kidney to her brother, and she is doing fine.

As April as Organ Donation Awareness Month ends, the needs for organ donation do not. The hospitals of Penn Highlands Healthcare ask that everyone think about the need for organ donation and sign up to be a donor someday.

To learn more about organ donation, Penn Highlands encourages you to go to www.core.org or to sign up to become a donor, go to www.registerme.org.