Family Spotlight

Meet Zach Baza ... A COTA Miracle

Zach Baza arrived in the world with much fanfare. The baby boy was born to Jesse and Carmelita, who were already raising four beautiful daughters. They were ecstatic at having a son, but within days joy turned to anxiety when they realized Zach had serious medical problems. While less than 24-hours-old, Zach had his first surgery where 12 blockages were discovered in his small intestine. Thirty days later the same surgery was performed to remove more blockages. Several months later Zach was still not able to keep any food down or have it go through his intestines. Zach became critically ill and by the middle of March 2008, Jesse and Carmelita were told the baby was in liver failure; they should begin making funeral arrangements.

Right before signing a do not resuscitate order for Zach, Jesse and Carmelita talked to a surgeon who said there was one last call they could make … to the transplant team at the University of Nebraska Medical Center in Omaha, Nebraska. They made the call and four days later Jesse, Carmelita and Baby Zach were on a plane to Omaha. By the end of that week Zach was listed for transplant, and on his six-month birthday (April 14, 2008), Zach received a small bowel, pancreas and liver transplant.

While Jesse and Carmelita were relieved, at the same time, they were frightened about the mounting costs they were facing. They were encouraged to contact the Children's Organ Transplant Association (COTA) to ask for guidance. They did and with COTA's assistance, the community of San Antonio rallied to help raise funds in honor of Zach.

"We had already been through the transplant surgery when we learned about COTA. We were facing mounting medical bills and our baby was struggling after a very serious surgery. We didn't know where we were going to go to get the money for our monthly COBRA payments when Carmelita's job was eliminated. It was COTA that gave us hope and helped us find a way," said Jesse.

"COTA provided us with a website to keep all of our friends, family members and supporters informed of Zach's condition while we were in Omaha," said Carmelita. "COTA also got our volunteers excited about fundraising. COTA is such a big part of the miracle we have experienced."

Please visit www.cota.org and select “Find a COTA Family” to locate a transplant family in your area needing financial and/or volunteer assistance.

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Transplants Today

Efforts to Increase Minority Organ Donations Show Success

Kidney transplants, for example, have a greater chance of success when the donor and recipient are as genetically similar as possible. But historically, organ donations from minority groups lagged far behind the need. Surveys have identified a number of reasons -- including lack of awareness of the need for donor organs, distrust of the medical establishment, and a belief that their religion disapproves of organ donation (although most religions have no rules against donation).

In the 1990s, the National Minority Organ Tissue Transplant Education Program (MOTTEP) was launched to raise awareness of the need for minority organ donors. And the effort seems to be paying off, according to the new study, led by MOTTEP founder Clive Callender, MD, a transplant surgeon at Howard University in Washington, D.C.

Using data from the United Network for Organ Sharing (UNOS), Dr. Callender and colleagues found that between 1990 and 2008, minority donation percentages in the United States went from 15% to 30%.

The rate of African-American donors more than doubled during those same years -- from 22 to 53 per million. Meanwhile, the rates among Hispanics rose from 23 to 50 per million, and those of Asians climbed from 10 to 35 per million.

The findings are published in the May 2010 issue of the Journal of the American College
of Surgeons.

MOTTEP runs media campaigns and works with various local organizations, including schools and social, civic and religious groups, to raise awareness of the need for organ donors. It also educates minorities on how to lower their risk of developing kidney disease.

The current findings suggest the programs are having an impact, according to Dr. Callender's team.

Along with the UNOS data, the researchers studied survey data from nearly 6,800 12-year-olds to 18-year-olds who have taken part in MOTTEP programs. As a group, the teenagers showed significant shifts in their understanding of kidney failure, organ and tissue donation, and their plans for becoming donor in the future.

Despite the progress, however, donor-organ shortages remain the number one problem in organ transplantation. According to UNOS, more than 107,000 Americans are on the national waiting list for organ transplants, with about 85,000 waiting for donor kidneys.
As of late 2009, minority group members accounted for 61% of the renal transplant
waiting list.

Source – www.medscape.com

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Drug Dramatically Reduces Nausea and Vomiting in Bone Marrow
Transplant Patients

Bone marrow transplant patients say two of the most debilitating side effects of the treatment are nausea and vomiting caused by chemotherapy and radiation. But a
Loyola University Health System study has found the drug aprepitant can dramatically reduce both nausea and vomiting when combined with other anti-nausea drugs.

Seventy-three percent (73%) of patients receiving aprepitant experienced no vomiting during the study period, compared with 23% of patients who received a placebo. (Both groups also received a standard anti-nausea drug.) Forty-nine percent (49%) of aprepitant patients experienced no vomiting and little or no nausea, compared with 15% of the placebo group.

Patrick Stiff, MD, presented findings at the 2010 BMT Tandem Meetings in Orlando, Florida. His study received a Best Abstract Award from the Center for International Blood & Marrow Transplant Research, one of two organizations sponsoring the meetings.

Aprepitant (brand name Emend®) was approved by the Food and Drug Administration
in 2003 to help prevent and control vomiting and nausea from chemotherapy. However, there previously had been only a few small studies on the benefit of aprepitant in bone marrow transplant patients who receive higher doses of chemotherapy than most other cancer patients. "We did not know how effective aprepitant would be for bone marrow transplant patients," Dr. Stiff said. "We now believe this should become a standard part
of patients' care."

Bone marrow transplant patients say nausea/vomiting is the second-worst side effect of the treatment. (The only thing worse is mouth and throat sores, according to patients.) Patients can throw up three to five times a day for a week or longer.

Other anti-nausea/vomiting drugs work by blocking signals from the stomach. But signals from the brain still can make a patient queasy. Aprepitant acts to block nausea/vomiting signals from the brain, and is taken together with drugs that block signals from
the stomach.

In Dr. Stiff's Phase III, blinded, prospective study, 90 bone marrow transplant patients were randomly assigned to receive aprepitant and 89 patients were randomly assigned to receive a placebo.

The aprepitant group did not experience significantly more side effects than the placebo group. Aprepitant also had no meaningful impact on the success of the transplant, relapse rates or overall survival.

Bone marrow transplants are used to treat such diseases as leukemia, lymphoma and Hodgkin's disease. Patients receive high-dose chemotherapy to kill cancer cells. Chemotherapy also kills immune system cells. So patients receive infusions of donated bone marrow cells that develop into healthy new immune cells.

Loyola University Health System has the largest bone marrow transplant program in Illinois. "One of the main themes of our research is to make bone marrow transplants more patient-friendly," Dr. Stiff said. "Transplants are much more comfortable and easier to tolerate than they were a few years ago."

Source – www.sciencedaily.com

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COTA News

We Hope to See You This Fall ...

COTA hopes to see you during the fall months. During October, COTA will be attending the following conferences:

• North American Liver Transplant Social Workers
  September 29 – October 2 in Boston Massachusetts
• Transplant Financial Coordinators Association
  October 6 – 8 in Lake Buena Vista, Florida
• Society for Transplant Social Workers
  October 20 – 22 in Atlanta, Georgia

Conferences are the perfect opportunity to catch up with our friends and to provide answers to questions about our organization and the many ways our services can benefit your transplant patients.

We will be kicking off the celebration of our 25th year of service to transplant families in September. Watch for more information about special programs in upcoming editions of this e-newsletter. We hope to see many of you soon!

We look forward to hearing from you. COTA’s staff is here, just a phone call or email away, and ready to make your families’ road to transplant a little easier.

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COTA Fast Fact

Funds Raised Are Not Taxable and Will Not Jeopardize Assistance Programs
Because the Children's Organ Transplant Association is the recipient and steward of the funds raised in honor of patients, these funds are not considered income for families. Families are not taxed on these funds, nor do these funds jeopardize any assistance programs patients have, or may qualify for in the future.

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