Transplant Information
July 16, 2007 is a day that changed our lives forever. This was the day TJ's life was given back to him. He was blessed and received his new heart.
Our family is so grateful to the donor family and the life saving gift they gave us that day. We ask all our loved ones, family, friends, and visitors - please keep this family in your thoughts and prayers.
~Lori, TJ's mom
TJ's Transplant Story
TJ's rapid illness came out of no where. One day he was a healthy happy boy, the next day he was in critical condition, on life support. He had contracted a virus that turned into Viral Myocarditis, they attribute this condition to Parvo Virus they found in his heart. This virus damaged and scarred his heart so badly he developed Restrictive Cardiomyopathy.
Restrictive Cardiomyopathy is a rare condition with no other course of action but transplant. They can not treat this condition with medicine. A heart that has restrictive Cardiomyopathy can not relax and fill with blood, therefore it has to work harder and harder to pump the required blood through out the body.
The blood will back up when it can't fill the chambers, this backed up blood fills the lungs, liver, and spleen with fluid. It puts the patient into congestive heart failure.
Prior to TJ's transplant he was placed on the Berlin Heart. The Berlin Heart is a Left Ventricular Assistance Device (L-VAD). This one was special because it is specifically designed for pediatric use. It is the only pediatric assistance device in the world and it is not FDA APPROVED.
Special Compassionate Use clearance had to be obtained. This was a long process. Between waiting for the insurance clearance, FDA clearance, and the actual time to get here, TJ waited over 1 week.
The heart arrived in Philidelphia and was driven to Pittsburgh. It was accompanied by a special representative from Berlin Heart.
Dr. Wearden placed the device on TJ July 11, 2007. The surgery took 6 1/2 hours. The Artifical Heart Department from UPMC had to monitor the device and TJ 24 hours a day. His room was very busy.
The family was notified before noon on Monday, July 16, 2007 that there was an offer for a donor heart. The team had already discussed it and wanted to accept it. They informed Randy & Lori that the heart was from an older boy, he was 5, and that the heart would be a little oversized for TJ. The team felt that an oversized heart would suit TJ and TJ's needs better for transplant.
This heart truly answered all prayers. There is no other information exchanged about TJ's donor family. For privacy reason nothing else is disclosed.
Dr. Wearden and the team left Children's at 4 PM to "procure" TJ's new heart. They would inspect it and make a final decision before returning. There was still a slim chance that they may decline the heart.
They didn't, they accepted.
Randy & Lori spent the entire afternoon and evening at TJ's bedside. Pap Pap was with them and there were a lot of games, laughing, and playing taking place while everyone waited.
At 7:00 PM Lori & Randy gave their final kisses and walked with the doctors and nurses while TJ was wheeled into the operating area. They were met at the end of the hall by another Cardiac patient's family. That family gave hugs, prayers, and much need encouragement and reassurance.
Family from Clarion & Erie made long drives down to be together while the surgery took place.
His transplant was performed at 8:00 PM at the Children's Hospital in Pittsburgh.
Dr. Morrell removed the Berlin Heart and placed TJ on bypass until Dr. Weardon arrived with TJ's new heart. The actual transplant went as smooth as can be and was over in 3 hours.
His recovery was immediate and rapid. He did not have to remain on the ventilator and was eating popsicles the next morning.
As of the beginning of September he had regained all his prior activities of running and kicking a ball. He experienced no developmental delays from his experience.
Besides his visible scars he experiences nightmares. The family is confident that as time goes on, those memories will fade and so will his bad dreams.
On January 2, 2008 TJ was readmitted to Children's Hospital in Pittsburgh with a serious complication from transplant. He has developed PTLD. This disorder causes tumors to grow in your lymphs. It can be quite devasting, fortunately CHildren's of Pittsburgh has a great team that brough TJ through some very rough, scary, painful days.
As of March 5, 2008 TJ & his Mom, Lori, are still at the hospital. Most of the PTLD is clear and he is getting treatment for some secondary infections he has acquired. They used a drug called Retuximap to fight the PTLD. That drug has an effect for 4 - 6 months. Over the next year TJ will have to have many scopes and biopsies to check for relapse. But the team and family are very optimistic about TJ's overall prognosis.
TJ was discharged and allowed to go home March 20, 2008, for a second time.
A follow up scope was performed on May 22 and found TJ to still be clear from PTLD. His heart biopsy from the week prior also found him to be rejection free.
TJ is still at home and recovering. He still has a fewchronic issues, but his overall health is good and he is a very age appropriate little boy.
He will be participating in the 2008 Transplant Games in PIttsbugh Pa. He will be competing in the 2 - 5 year old bracket of the 50 meter dash, the Softball throw, and the Long jump. He and his mother will also be walking the 5K. The games take place during TJ's 1 year anniversary and are a way for the family to commemorate TJ's health and strength.