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Disease Forces Couple to Seek Living Organ Donor

by on May 05, 2014 6:15 AM

Matt Crater was in his prime -- a 25-year-old single guy working in Allentown after earning a degree at Penn State.

He felt invincible.

And then he started feeling a strange pain in his foot. He thought maybe it was broken. It wasn't. So doctors started their work – blood tests, a stress test, ultrasound -- you name it.

At a follow-up appointment, when the nurse bypassed the scale to get the routine weight and led him straight a doctor's office where they sat across from each other at a desk -- that's when Crater knew something was wrong.

"That's when they told me I did not have a lot of kidney function left and it was going to get worse and at some point I was going to be on dialysis for the rest of my life unless I had a transplant," Crater says.

Crater was stunned. At the time, there weren't any major symptoms, so for him, it didn't seem real. It turned out that the pain in his foot was a symptom of gout caused by improperly functioning kidneys that created a build up of uric acid. He had Chronic Kidney Disease.

"You kind of don't believe it at first," Crater says. "But you continue to see the doctor and you watch your blood work and your numbers start to come down and you start to see the trend, 'oh my gosh my kidney function is really failing.'"

The news didn't stop Carter from living. Eventually, he married. Now, he lives in Bellefonte with his wife and 2-year-old and 3-month-old daughters.

In 2013, Crater's kidney function dropped to the transplant level and his doctor referred him to a transplant team. Since then, Crater has started to feel more of the physical effects. After work, he goes home feeling fatigued, sometimes moody. When he was single, he could sleep on the couch for three hours, no big deal. But now he has a family and responsibilities and he wants to be able to help.

Doctors think Crater's best chance is a live donor and suggested he start sharing his story in hopes ultimately it would lead to a compatible donor. Typically a private person, Crater finds it a bit uncomfortable to talk about himself, his circumstances, but he understands it could help him find a donor.

Crater's wife, Susan, is helping by sharing his story on Facebook.

"In 2013, after an appointment with Matt's transplant team it became apparent that waiting for a deceased donor was not really in our best interest," Susan says. "Matt's disease was getting worse and finding a living donor was going to be imperative in a shorter period of time than we originally thought."

Over the past five years, Susan says she has noticed the progression of the disease in her husband. She's watched it change him.

"The outgoing, adventurous man I met and married, has slowly become an exhausted homebody because of his kidneys. It is heartbreaking to sit back and watch this without being able to do anything to help," Susan says.

Susan says she could be a potential match, but with two small daughters, the couple decided it would not be best for both of them to undergo surgery.

"Knowing that he could possibly outlive the first transplant, I'm hoping to be able to be his second donor later in life," Susan says.

Susan created the Kidney for Matt Crater Facebook page in hopes of finding the living kidney donor.

"I want Matt to be able to feel good again. I want him to have the energy to play with our girls when he gets home from work, instead of being worn out and needing to rest," she says. "I want our family back and the Chronic Kidney Disease out of our lives."

Anyone interested in learning more about how they can help Matt Crater can contact the Transplant Center of the Lehigh Valley and mention Crater's name.

When it comes to organ donations, there have been countless success stories.

Linda Solano's older sister was just 14 when she was diagnosed with a rare kidney disease. Solano was eight. Growing up, Solano watched her sister undergo different treatments, including dialysis. When both women were in their 20's, Solano's sister received a transplant from a deceased donor.

But it failed.

Solano -- who is now a registered nurse in the labor and delivery unit at Mount Nittany Medical Center -- knew the time was coming for her to donate her kidney to her sister Rosemarie Ali.

Ali tried to discourage the idea. Though as time went on Ali began to see her sister's kidney as her only likely option for a longer life.

"I was a nursing student at the time, I knew that was what we should be doing and I knew it was a better chance (of survival)," Solano says.

In 1988, they both went in for surgery. Fast forward 25 years and you see they are both doing well.

Ali got married, traveled, worked as a banker until retiring roughly two years ago, and has a son in medical school.

"She traveled all over the world. She's done everything she wanted to do and still does. None of it would have been possible if she was on dialysis. She probably wouldn't be here today," Solano says.

Still, the anti-rejection medicine, which Ali has to take constantly, wreaks havoc on a person's body, diminishing her quality of life overtime.

For Solano, the surgery was a relatively simple process. Afterward she got married, had three children, and she has worked as a nurse for 26 years. Today, Solano is an advocate for organ, stem cell and bone marrow donation registration.

Solano says there are several reasons people do not register to be an organ donor: the person doesn't realize many people can be helped through one donation, the person doesn't want to think about their death and therefore avoids the issue, or the person believes a myth that doctors will not make every effort to save their life if they know they're an organ donor.

"It's just amazing how many people you can save with one donation," she says. "Everyone should consider themselves a potential donor."

Every 10 minutes someone is added to the national organ transplant list, according to the United Network for Organ Sharing, which coordinates organ transplant activities in the United States. Everyday, an average of 79 people receive organ transplants and an average of 18 people die waiting for transplants due to the shortage of donated organs.

In Pennsylvania, there are roughly 8,542 patients on the organ transplant waiting list with 79 percent -- or 6,476 patients -- waiting for a kidney.

So far this year, doctors have performed 157 organ transplants in Pennsylvania of which 82 were kidneys. Last year, doctors performed 1,866 transplants on Pennsylvania patients of which 969 were kidneys.

According to the National Kidney Registry, which coordinates living organ transplants, there are three types of living kidney donations. A direct donation is when the donor knows the recipient and wants to donate directly to that person, according to the registry. The problem is that often loved ones are not compatible donors.

The second type of kidney donation is a coordinated exchange where a wife wants to donate to her husband, but is not compatible, so instead donates to another patient in need of a kidney. Then, a compatible loved one of that recipient would donate a kidney to the woman's husband.

The third type of kidney donation is a Good Samaritan donation where a person donates their kidney to a stranger. To learn more about becoming a Good Samaritan donor, click HERE.

For information on how to become an organ donor, click HERE.

For information on how to become a stem cell donor, click HERE.

For information on how to become a bone marrow donor, click HERE.

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Jennifer Miller is a reporter for StateCollege.com. She has worked in journalism since 2005. She's covered news at the local, state and national level with an emphasis on crime and local government.
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