Family Spotlight

Meet Major ... A COTA Miracle

On July 7th, the town of Round Rock, Texas, is going to be rockin’ when resident Major Key celebrates his second transplant anniversary … and his second chance at life. Just a couple years ago his parents, Karroll and Stephanie, could not have imagined this milestone would ever be a reality.

At 32 weeks of gestation, doctors discovered that Stephanie had no amniotic fluid surrounding her unborn baby and she was sent to the hospital for an emergency cesarean section. Tiny Major was born with posterior urethral valve, an obstruction that badly damaged both his kidneys in utero. Major had no kidney function. This premature infant needed dialysis to survive his first months of life, but it was dangerous and difficult -- an uphill battle for the baby. Several times along the way, Karroll and Stephanie prepared for Major’s death.

Then Stephanie heard about the Lucile Packard Children’s Hospital at Stanford in Palo Alto, California, and the transplant team there gave this family hope. However, the center was 1,800 miles from home and the family would have to live there for a minimum of three months. In addition, their medical insurance did not cover any living expenses or their household expenses while they were out of work.

It was during these days of desperation that
the transplant team at Lucile Packard told the Key
family about the Children’s Organ Transplant
Association (COTA).

“COTA provided hope for our family by showing us that money should not be an obstacle when faced with a transplant. COTA provided hope for our family in the form of encouragement and support to our team of volunteers who worked tirelessly to raise funds for transplant-related expenses,” said Karroll Key, Major’s father.

After a flurry of fundraising activity from COTA volunteers, the family temporarily re-located to California and their hope quickly turned into a miracle when Major received a kidney from his father.

“At birth, we were given little hope Major would ever leave the hospital. Then a transplant center 1,800 miles away from home gave us hope … and COTA helped turn that hope into a miracle. COTA gave us a sense of peace about the financial aspects involved with Major receiving his father’s kidney,” said Stephanie Key.

Today the Keys are back at home in Round Rock, and Major is doing well -- running, jumping and shooting a basketball on a daily basis. He no longer needs physical therapy and he is making huge developmental strides. Major is getting ready to head off to preschool with his neighborhood friends.

According to Stephanie, “As we celebrate Major’s transplant anniversary, the true gift we will remember is COTA … an organization of caring professionals who give children a chance to live life to the fullest.”

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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Family Resources

Travelling After Transplant

Once home, a transplant patient typically has less energy than before the surgery. It takes time for the body to heal and adjust to new medications. Napping and pacing of activities are recommended to prevent placing a strain on the recovery. During recovery and the return to a more normal routine, consider traveling or going on a vacation -- especially during these days of summer.

Check with your transplant coordinator for guidelines on traveling early after transplant. It may be recommended that your family waits six to 12 months before taking an extended vacation, particularly one to a remote location.

Travel within the first two to three months after transplant is not recommended. Travel outside the continental United States is also not recommended for the first six to 12 months. Thereafter if traveling to an underdeveloped country, consult your transplant team regarding vaccinations and limitations or advice about water or foods in that area.

If you are planning a family vacation, the transplant recipient may be advised to have blood tests taken a few weeks before to be sure there are no abnormal levels. Call your transplant coordinator to review medications, blood test results or any specific care needs. If traveling to a different time zone, discuss how to adjust medication times.

Before you leave, be sure you know where the closest hospital and/or transplant center is located in case of an emergency. Be sure to take enough medication to last your entire trip and, if flying, pack medications in a carry-on bag. Taking extra medication and packing the extra medications in a different bag may also be helpful. Take all the important phone numbers with you in case you need to call the transplant center while you are away. You may want to have bottled water if you are traveling in areas where sanitation is of concern.

Most transplant centers discourage travel to third world countries for patients who are immunosuppressed. The risk of acquiring infections in these areas is high and appropriate health care may not be available. Additionally, some foreign travel may require immunizations that are not safe for transplant patients who are immunosuppressed, such as measles and smallpox. If you plan to travel in this type of area, please discuss this with your transplant team to be fully informed of the risk.

Source: Columbia University Medical Center and
University Hospital of Cincinnati Liver Transplant Program

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

Discover the NEW Transplant Experience

In the years since the Transplant Experience program was launched, great things have been accomplished. Transplant recipients and those awaiting transplantation have received essential education, valuable advice, and useful materials to support them throughout the transplant process.

Now, with the recently upgraded Transplant Experience website, exciting new ways to learn, find support, and interact with the transplant community have become available. New features enable registered users to personalize their online transplant experience by creating their own Your Profile and Your Recipes pages. Through www.TransplantExperience.com, registered users can also communicate with others in the transplant community by activating the new Send to a Friend feature, which allows articles and other useful information to be forwarded to friends and family. To celebrate the date of transplantation, “transplant birthday” greetings can be sent via the new Transplant Birthday email feature. To help you stay current with the latest legislation affecting transplantation and organ donation, a State by State Legislation Update feature has also been created.

If you are not already a member, join Transplant Experience by calling 1-800-466-9191 or by visiting www.TransplantExperience.com. Upon joining, newly enrolled members receive a complimentary Welcome Kit that includes a treatment journal, a medication organizer, and an informational and educational DVD.

Great news for those who tweet: You can now follow Transplant Experience on Twitter. Visit www.twitter.com/TransplantExp for updates and news of interest to the transplant community.

© 2010 Astellas Pharma US, Inc. 010D-032-1791 06/10 Printed in USA

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COTA Family News

COTA Patient Activity Report ... In the Mail

Start watching your mailbox for COTA’s Semi-Annual Patient Activity Report being sent to all of our families. Along with the statement, families will receive a letter detailing new COTA services and programs. The statement summarizes account activity for the period of January 1 through June 30, 2010. Please note that this statement will not include any reimbursements received and paid after June 30th. COTA families find this document, along with copies of reimbursement requests, provide a good ‘snapshot’ of their reimbursement trends. Please review your statement carefully. Contact COTA at 800.366.2682 or email FamilyInfo@cota.org with any questions about the statement or the reimbursement process.

Please pick up the phone or send us an email if you have any questions -- we enjoy hearing from our families!

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Extensive Volunteer Support
Customized guidance and programs are developed to meet the unique needs of each volunteer group. Throughout the entire community fundraising campaign, COTA’s staff
is available to provide information and assistance, as well as practical solutions to fundraising challenges.

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