Family Spotlight

Meet Gregory Ramsey … A COTA Miracle

Until his 10th birthday, Gregory Ramsey had been a full-time boy, avidly participating in soccer and Tae Kwon Do. Looking back, his parents, Darren and Mary, remember that he bruised easily, but they never really worried about it. On a September day in California in 2005, Gregory came to the breakfast table wrapped in a blanket, and his parents decided to seek medical advice. His first round of tests came back with a diagnosis of pancytopenia, a low production of red and white blood cells and platelets. In January 2006, the diagnosis changed to aplastic anemia. Forced to withdraw from all sporting activities, Gregory started treatment. When those treatments failed, Gregory was tested again and in February 2007 the family received the awful diagnosis: fanconi anemia. The only treatment is a bone marrow transplant.

Faced with mounting expenses, the Ramseys were told to contact the Children’s Organ Transplant Association (COTA) to find some relief from the mounting stress of the diagnosis and from the news that they would relocate from California to Minnesota for treatment. “Almost instantly, COTA guided a group of our family and friends through fundraising efforts that proved to be a true lifesaver for our family. We were so far from home. COTA provided a website that allowed us to keep our family informed about Gregory’s health, and allowed our friends to send us their prayers.”

According to Darren and Mary, “COTA means there is someone out there fighting for your family’s financial needs so you can spend your time fighting for your child’s health -- not worrying about money. COTA meant we were not alone in Gregory’s transplant journey … COTA gave us hope.”

Luckily a match was found quickly. Gregory received his transplant, and his second chance at life, at the University of Minnesota Medical Center, Fairview on December 13, 2007. The family remained in Minneapolis until late March 2008.

“With the many prayers God answered for Gregory through his transplant team and through our COTA network of support, our family was able to witness a miracle,” said his parents. “This was the most unbelievable time of our family’s life.”

In December 2008, the Ramseys returned to Minneapolis for a series of one-year follow-up tests. Gregory is feeling much stronger, is participating in many of his favorite activities in his new school, and is studying very hard. At the checkup, Gregory got two thumbs up.

Truly a reason to jump for joy!

Please visit www.COTAforGregoryR.com and leave the Ramsey family your
own message of encouragement, or make a donation to help with ongoing transplant-related expenses.

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Family Resources

Post-Transplant Behavior Spells Success … or Trouble … for Teen

Sid Marshall was trying to stay up all night. It was spring break 2007 and the 15-year-old Red Bluff, California, boy was reveling in bits of normalcy that had eluded him during a lifetime of heart problems. At the moment, he was focused on the rather mundane worry that he would awaken with a glob of shaving cream adorning his face or toothpaste in his hair -- pranks he and his visiting cousins had agreed to play on the first person to nod off.

Most nights he escaped the shaving cream gauntlet unscathed, but the late nights extracted a much more serious toll. Sid slept late nearly every day that week, neglecting until early afternoon his morning handful of 11 pills necessary to keep his body from rejecting the transplanted heart he had received the previous July. “I wanted to be like everybody else,” said Sid.

“I wanted to stay up late, and to take them later. I promised myself it was only for week, and then I’d get back on my regular schedule.” Sid did not know it, but he was entering the most dangerous part of his transplant journey: the period between one and three years post surgery when many teens stray from their medication regimens.

Because Sid’s time-released medication affords only a 30-minute grace period between doses, a delay of even just a few hours has repercussions. By the end of the week, Sid was experiencing a severe rejection episode, and his life was in the balance.

It seems counterintuitive that teens who have overcome the hurdle of an organ transplant would jeopardize their lives over the seemingly simple matter of medication. But recent studies estimate that as many as 30 to 50% of U.S. adolescent organ transplant patients miss some of their anti-rejection medication, and non-adherence is the main reason for organ rejection and re-transplantation in this age group.

Even minor, nearly unnoticeable rejection episodes can damage formerly healthy organs; repeated assaults can cause organ failure.

Physicians at Lucile Packard Children’s Hospital are concocting a variety of ways to predict which patients are most at risk and how best to help them -- from talking tough to parents and teens, to devising ways to pinpoint possible problems even before surgery, to contriving desperate stop-gap measures to get medication into the most reluctant of teens.

The reasons teens cite for not taking their medication run the gamut. Some anti-rejection medications cause side effects like acne and weight gain that are particularly onerous
to image-conscious adolescents. Some kids are reluctant to interrupt activities with peers to conform to rigorous, time-sensitive medication schedules. Others were so traumatized by the experience of having an organ transplant that they avoid anything that reminds them of the procedure. The most common reason might surprise you, however. They
simply forget.

Although an organ can withstand one or two forgotten doses of medication, the psychological implications are much more severe. Because nothing seems to happen, it is common for adolescents to begin to doubt their parents’ and doctors’ insistence that -- for the rest of their lives -- every dose is critical.

Peer-to-peer straight talk is one way to break through the invincibility barrier. In 2001,
15-year-old heart transplant patient Anthony Hollingsworth suffered a severe rejection episode after deciding he did not need to take his anti-rejection medication. When he awoke after spending nearly a month unconscious while his medical team fought for his life, he vowed to tell other teens how important it is to follow their doctors’ orders. His video, in which the outgoing, happy teen dishes about dating, friendships and family to a rapt audience of hospital staff, is required watching for many pre- and post-transplant teens
at Lucile Packard Children’s Hospital. “

A lot of doctors don’t understand when you go back into the real world you’re around your friends, you’re like, ‘OK, well they don’t have to take medication, so why should I have to take medication?’” Anthony says in the video. “You get around your friends, and you don’t want to feel like an outcast.”

Sid has taken Anthony’s advice to heart. His own recent rejection episode frightened him badly. “I was so scared I was going to die,” he says. “It was a huge wake-up call.”

Shepherding a child to independent adulthood is a tremendous challenge when it is necessary to simultaneously monitor their medication intake twice a day. Knowing when to back off and when to knuckle down is like taking aim at a moving target with your child’s life on the line. Parents and physicians have the best luck when they team up on particularly hard-headed cases.

Packard physicians are pursuing new, steroid-free transplant protocols to reduce the burden of the medications on kids. They are also testing whether it might one day be possible to wean at least some transplant recipients off immunosuppressants entirely.

All of that cannot save everyone, though. Although Sid has recovered well, Anthony was not so lucky. After years of struggling with ongoing rejection, the 19-year-old died.

“In the end it was just me getting lazy,” Sid said. “There’s not much the transplant team can do about that when they’re five hours away.” Asked what he would like to share with other transplant teams, he paused.

“I would tell other kids to keep taking their meds no matter how good they feel. I was warned, and it still happened to me. I was just like Anthony.”

Source: Stanford Medical Magazine

For more information about Transplant Family Resources, please or visit www.cota.org and click on “Family Resources”.

Astellas Pharma Patience Assistance Programs

COTA’s team of professionals knows it is very important for our transplant families to be aware of resources that can help with transplant medication costs. There are programs available to ease the financial burden -- like the program highlighted below.

As part of their commitment to patient care, Astellas Pharma US, Inc., offers patient assistance programs to help transplant patients and families save on medication costs every month -- including a rebate card (value card). To find out if you are eligible,
call the value card support line at 1-866-790-7659 or visit www.transplantmedsavings.com.

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COTA Family News

COTA Reimbursement Supplies

Do you have all of the COTA reimbursement supplies you need?

When your supply of payment authorization forms (requesting family reimbursement or provider payment) or business reply envelopes runs low, please contact us. We would be happy to send you more forms or envelopes.

Please call COTA at 800.366.2682 or email , or send a brief note with your next reimbursement submission to let us know what you need. Feel free to contact us if you have questions or concerns about any aspect of the reimbursement process. It’s good to hear from our families!

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Funds Available for Transplant-Related Expenses
Funds raised through the Children’s Organ Transplant Association in honor of patients are available for ongoing transplant-related expenses that include transportation, lodging, and food for follow-up transplant center visits; medications; co-pays and deductibles; and medical care. COTA funds are also available for post-transplant care.

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