Family Spotlight

Havalah Kolb ...
Three Years Post Transplant and Still Celebrating Her Second Chance at Life

Havalah Kolb was a tiny infant weighing just over five pounds at birth. Doctors watched her closely as she struggled to gain even tiny amounts of weight. When the baby was five weeks old, parents Kristen and Steven were told their precious daughter had biliary atresia, a life-threatening disease that attacks the liver. At four months old, Havalah’s doctors started preparing her parents for a liver transplant. But her condition stabilized, and Havalah was able to live at home for almost two years.

Despite her yellow skin and eyes, and despite being fed by a tube, this toddler was a happy little girl. Family and friends rallied around Havalah’s parents and started working with the Children’s Organ Transplant Association (COTA) to raise funds for
transplant-related expenses. According to mother Kristen, "Just when we were all feeling helpless with this diagnosis, COTA helped us to feel like we were proactively doing something to help, and kept us busy while waiting for 'the call'."

The call came in August 2005 and Havalah received her life-saving liver transplant. Just one day after the transplant she had to be rushed back into surgery to repair a clotted hepatic artery. Then Havalah had several bouts of suspected rejection and another hepatic artery repair surgery. But today, three years after the transplant, Havalah is thriving.

Havalah is doing everything healthy kids can do. She is taking ballet and swimming lessons, and she is attending school. This beautiful and charming little girl is a gift to her parents – and to the communities of Green Bay and Milwaukee that rallied to help her.

According to Havalah’s parents, Steven and Kristen, "COTA has given us hope that we will be able to provide our daughter with a normal, happy childhood. COTA allows us to deal with the normal financial issues that people with healthy kids have."

-Top-

Transplants Today

Statins May Reduce Acute Graft-Versus-Host Disease

Researchers from Ohio State University have reported that statins may reduce the risk of developing acute graft-versus-host disease (GVHD) among patients who undergo allogeneic stem cell transplants. These results were reported at the 2008 Annual Meeting of the American Society of Clinical Oncology held in earlier this summer in Chicago.

An allogeneic stem cell transplant is a procedure that utilizes high doses of chemotherapy and/or radiation therapy to kill more cancer than standard doses of treatment. However, the high doses of therapy also cause severe and extensive side effects. One of the most prominent and risky side effects caused by the high doses of therapy is low levels of blood cells. There are three main types of blood cells: red blood cells, which supply oxygen and nutrients to cells; white blood cells, which provide protection against infection; and platelets, which help the blood to clot. Because low levels of any of these types of cells can cause life-threatening consequences, particularly low levels of white blood cells, donors supply hematopoietic stem cells, which are immature blood cells found in the circulating blood. These donated stem cells are infused into the patients following therapy to replenish the levels of blood cells and reduce potential associated side effects. In addition, the donated stem cells tend to mount an attack on the patient’s cancer cells, providing an effect referred to as the graft-versus-leukemia effect. Unfortunately, the donated stem cells can also mount an attack on a patient’s normal tissue, resulting in a condition referred to as graft-versus-host-disease, which can be either acute or chronic -- and can be life-threatening. Despite 40 years of intensive research, GVHD remains a major stumbling block to the success of allogeneic stem cell transplantation.

Researchers recently conducted a small study that included 10 patients with leukemia who had received statins, or cholesterol-lowering agents, for one month prior to allogeneic stem cell transplantation and then for three months following the transplant.

• Only one patient developed significant acute GVHD
• Half of the patients developed chronic GVHD

The researchers concluded that it appears as if statins may help reduce the risk of developing acute GVHD and that future studies further evaluating statins in this role are warranted. Patients who are to undergo an allogeneic stem cell transplant may wish to speak with their physician regarding their individual risks and benefits of participation in a clinical trial evaluating statins or other methods by which to reduce GVHD.

-Top-

OPTN/ UNOS Board Approves Measures to Broaden Access for Living Donation and Institutes Policy Changes Regarding Pediatric Transplantation

The OPTN/UNOS Board of Directors has recently approved elements of a pilot national system to facilitate kidney paired donation. Kidney paired donation involves two or more living donor transplants where the initially intended donor/recipient pairs are medically incompatible; two or more donor/recipient pairs are then crossed to provide a compatible living donor for each recipient.

"The broader the base of people who can be matched, the more paired transplants can be done to help those in need," said Timothy L. Pruett, MD, President of the OPTN and UNOS and Chair of the OPTN/UNOS Board of Directors. "It's important to have a program that gives people the most opportunities possible for a transplant." The Board's action followed the December 2007 passage of the Charlie W. Norwood Living Organ Donation Act, which clarified the legal basis for paired donation.

The initial pilot system will be voluntary, open to any living donor kidney transplant program meeting OPTN requirements and for any candidate on the OPTN kidney waiting list. The matching system is designed to optimize the number of living donor kidney transplants through two-or three-way kidney exchanges, while allowing flexibility for circumstances such as the donor and/or candidate's willingness to travel for a transplant. Additional proposals for system improvement, such as ongoing "donor chains," will be considered as future results of the pilot are evaluated.

Since 2000, approximately 350 paired donation transplants have been performed in the United States. Potentially thousands more transplants can be done through paired donation. Several multi-center or regional networks currently arrange paired donation. The OPTN pilot program is not intended to replace these efforts, but to offer a program based on its existing data infrastructure and give programs and candidates potential national access in donor matching.

The Board also accepted a series of policy changes intended to help achieve the ultimate goal of eliminating deaths among children awaiting transplantation. The policy changes in general will ensure broader consideration of pediatric candidates, particularly when the organ donor is also a child or adolescent.

"The majority of organs from young pediatric donors already go to children," said Stuart Sweet, MD, PhD, Chair of the OPTN/UNOS Pediatric Transplantation Committee. "However, altering the sequence of offers will allow more efficient matching for children who are in need and may be at hospitals somewhat farther from the donor's location."

Specific policy changes include the following:

• In heart transplantation, existing preferential matches from adolescent donors (older than 11 and younger than 18) for pediatric candidates will be extended to all pediatric donors (less than 18). In addition, hearts from pediatric donors will first be offered to matching pediatric candidates up to 500 miles from the donor location for the most urgent patient category (Status 1A) before local adult Status 1A candidates. Status 1B pediatric candidates up to 500 miles from the donor hospital will then be considered for any offers not accepted for a 1A patient.
• In lung transplantation, a new Status 1 and 2 will be created for candidates age newborn to 11. Previously, these candidates received priority for lung offers based only upon accrued waiting time. Status 1, the most urgent, includes patients who meet criteria indicating they have respiratory failure or severe pulmonary hypertension. Status 1 candidates will receive higher transplant priority than Status 2. In addition, lungs from deceased donors age 11 or younger will be offered to all compatible candidates 11 or younger within 1,000 miles of the donor location before other patients are considered.
• In liver and combined liver-intestine transplantation, organs from donors age 10 or younger will first be considered for all Status 1A (most urgent) local and regional pediatric candidates (younger than 18), then all national Status 1A candidates age 11 and younger, before the organs are considered for other candidates.

The Organ Procurement and Transplantation Network (OPTN) is operated under contract with the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation by the United Network for Organ
Sharing (UNOS).

-Top-

COTA News

COTA Saturday Initiative “One Million Miracles”
Creating a Nationwide Network of Partners

The Children’s Organ Transplant Association (COTA) is proud to announce that COTA Saturday 2008, scheduled for the third Saturday in September, is attracting a nationwide network of partners who are each collecting one million pennies toward a goal of providing One Million Miracles.

Launched in 2006, COTA Saturday is the vision of a New York volunteer and COTA patient family member Barbara Petula. "As a child, I always felt God had special plans for me. I had to have a purpose, and I looked for that fulfillment most of my adult life. Never in a 'million' years did I think it would be to help my own family," said Barbara Petula, COTA Saturday National Chairperson. "When my niece Samantha became ill, and we later learned that she needed a liver transplant, the need to do something to help became my personal challenge. When I first learned of COTA, I knew my journey had just begun."

COTA Saturday is designed to give local groups and individuals nationwide a platform to raise awareness for the need for organ and tissue donors, and to raise funds to assist families with their transplant-related expenses. "COTA owes a huge debt of gratitude to Barbara Petula who, as she was helping her niece, decided that she wanted to do something for all children awaiting transplant. Thus, COTA Saturday was born," said COTA President Rick Lofgren.

According to Barbara Petula, COTA’s One Million Miracles means:

One person can make a difference.

Millions of pennies help save kids’ lives.

Miracles are possible.

Last September, Briton Segler, Service Chair for Trinity University’s Health Care Administration Department (San Antonio, Texas) discovered COTA Saturday after doing a website search. She immediately decided to organize a dodge ball tournament to raise funds and awareness for COTA. On Saturday, September 27th, Briton’s idea really paid off; her tournament raised $500 to help COTA get closer to its goal of making One
Million Miracles.

According to Segler, "I chose to help COTA because it is an organization that shares my passion for health care and for helping young people who face life-threatening medical conditions." Even though Segler is not her organization’s Service Chair this year, she is hopeful the group will do another COTA Saturday event this September.

Individuals are also deciding to help COTA give hope and make miracles. A 40-year employee of American Appraisal Associates (Milwaukee, Wisconsin) recently decided to forego the gold watch or wooden rocking chair the company includes on its gift list to recognize its employees’ years of service. Instead, Ed Raether asked his fellow employees to host a COTA fundraising event to help with his granddaughter’s transplant-related expenses. Raether’s granddaughter was born 10 weeks premature and needs a life-saving kidney transplant; her family began working with COTA several months ago.

The result? American Appraisal Associates hosted a hot dog sale and in one afternoon, Raether’s co-workers commemorated his years of service with more than $6,000 raised for transplant-related expenses. However, in addition to what the employees raised, the company’s executive staff pledged $5 for every $1 raised for their personal support of COTA. In total, this effort raised $36,375 to give hope and make a miracle for Ed
Raether’s granddaughter.

Currently, COTA is identifying national, regional and local groups, as well as individuals, to participate in COTA Saturday’s 2008 One Million Miracles program. Anyone who wants to learn more about One Million Miracles can go to www.millionmiracles.org. Information and templates for organizing a local COTA Saturday event, or for collecting and donating pennies, can be found on the website.

"Our goal is to assure that no child is denied a life-saving transplant due to a lack of funds," said Rick Lofgren, COTA President. "COTA Saturday is a wonderful way to celebrate the hallmarks of this organization -- all money raised through a local COTA fundraising campaign is used for transplant-related expenses and there is no charge for any of our services. To me, One Million Miracles means one day at a time ... one penny at a time ... one child at a time ... one miracle at a time."

-Top-

COTA Fast Fact

The Children’s Organ Transplant Association (COTA) provides:
Funds That Are Not Taxable and Will Not Jeopardize Assistance Programs
Because the Children’s Organ Transplant Association (COTA) is the recipient and trustee of the funds raised on behalf of patients, these funds are not considered income for the family. The family does not pay taxes on the funds, and these funds do not jeopardize any assistance the patient has, or may qualify for in the future. Regardless of insurance coverage, transplant patients work with COTA to ensure that a transplant does not financially devastate their families.

-Top-