Family Spotlight

Meet TJ Wilson … A COTA Miracle

Four-year-old TJ Wilson is alive, growing and able to celebrate Valentine’s Day this year because of a donor heart he received nearly three years ago.

TJ’s story is one that strikes terror in a parent’s heart. According to Randy and Lori Wilson, TJ was a happy and healthy toddler until one day in June 2007, while being treated for flu-like symptoms, TJ suffered a cardiac arrest … and the Wilson family’s life changed forever. Doctors quickly went to work on the toddler. Randy and Lori watched while doctors tried unsuccessfully to re-establish a heart beat. TJ was placed on a heart/lung bypass machine and the waiting began. Several weeks later they were told TJ had restrictive cardiomyopathy and his only chance for survival was a heart transplant. The medical team at Children’s Hospital of Pittsburgh moved quickly to equip TJ with a Berlin Heart to buy the time needed to find a donor heart. On July 16, 2007, TJ received his new heart, and his second chance at life.

During these upside-down days, the Wilsons heard about the Children’s Organ Transplant Association (COTA). “COTA gave our family and friends fundraising guidance and structure so they could do something to help us when we were feeling so very helpless,” said Lori. “At a time when we felt hopeless, COTA empowered our family and friends. So many people wanted to help: COTA turned that desire to help into a fundraising effort that generated much-need financial assistance … and a sense of hope.”

TJ was released from the hospital and returned home in mid-August 2007. However the homecoming was short-lived. TJ was readmitted to the hospital in early January 2008 when he was diagnosed with post-transplant lymphoproliferative disorder -- a post-transplant complication caused by the Epstein Barr virus. TJ was very sick again, and his body started to reject his donor heart. After specialized medications and medical intervention, TJ was able to fight off the disease and the rejection. On March 20, 2008, TJ and his Mommy came home for a second time.

“TJ’s entire story is a miracle. On a seemingly routine trip to the ER to address possible dehydration from the flu, our healthy toddler nearly died as we watched. Since that evening, we have witnessed miracle after miracle with TJ. Thanks to COTA and his amazing transplant team, we are home and our boy is thriving,” said Randy.

TJ is now gaining weight, growing taller and takes only two medications each day. TJ has no developmental delays, no learning issues, no speech problems and is able to eat anything he desires.

A true COTA miracle of the heart!

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

-Top-

Family Resources

What To Watch For

While you were in the hospital for your/your child’s transplant, your doctors and nurses were watching for symptoms of a rejection episode, infection and other problems. Now that you are at home, you need to be a partner in your/your child’s care and watch for these signs yourself. If you/your child experiences any of the following symptoms, or if you "just don't feel right," call your transplant center:

• Shortness-of-breath or chest pain
• Temperature higher than 100.5 degrees
• Flu-like symptoms such as chills, aches, joint pain, headache and increased fatigue
• Nausea, vomiting and diarrhea
• Severe stomach cramps
• Increased pain, redness or tenderness over the transplant site
• Abnormal drainage near or on the incision
• Very dark or tea-colored urine
• Decrease in the amount of urine or no urine at all
• Pain or burning when urinating
• Frequent urination
• Yellowing of the eyes or skin
• A six-pound weight gain in less than three days
• Abnormal blood sugars
• Sore throat

Here are Some More Reasons to Call:

• Patient cannot or did not take anti-rejection medications
• Drainage tube comes out
• Persistent stomach pain or indigestion
• Patient catches a cold or another illness
• Urine is cloudy, bloody or smells bad
• Exposure to chicken pox, measles, German measles or mumps, and have never had the disease
• Three pound weight loss in less than one day
• Increased swelling in the hands or feet
• A doctor other than the patient’s transplant doctor changes a medication or prescribes a new medication
• Sores or blisters in mouth
• White spots on tongue or in mouth
• Patient wants to take an over-the-counter medication
• Symptoms of depression, anxiety or rage
• Relapse into alcohol or drug use

Call your transplant center if you/your child experiences any of the symptoms or situations you have been instructed to watch for, do not feel "right" or have any questions related to transplant, care and recovery.

Source: Beth Israel Deaconess Medical Center

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

Astellas Pharma Patient 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.

-Top-

COTA Family News

COTA Patient Activity Report

It is time again for the Semi-Annual COTA Patient Activity Report to make its way to your mail box. Along with the statement you will find a letter detailing new COTA services and programs.

When you receive these statements you will notice that it summarizes the period of July 1 through December 31, 2009. Please note this will not include any reimbursements received and paid out after December 31st. Over the years COTA families have found that this document, along with copies of reimbursement requests, provides a good ‘snapshot’ of their reimbursement trends. Please review the statement carefully.

Please contact COTA at 800.366.2682 or with any questions or concerns about your statement or any other aspect of the reimbursement process. It’s good to hear from our families!

-Top-

COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Stewardship of the Funds and Non-Profit Status
The Children’s Organ Transplant Association is a national, non-profit organization. COTA is responsible for the oversight of the activities of community fundraising campaigns, and serves as steward of funds raised. Funds donated to COTA are deductible to the fullest extent allowable by law.

-Top-