Johnny Gets a New Heart!
On June 12, 2012, the long awaited news that we had been praying and hoping for finally arrived. On June 12, 2012 at about 7:00pm , we received the call from the Mount Sinai Transplant Coordinator that they had a donor heart for Johnny. After countless hours of prepping for surgery, his new heart finally arrived on June 13th, 2012 at about 1:00pm. By 4:15PM, Johnny had his new heart. Unfortunately, things did not run as smoothly as we would have wanted. Johnny was in the hospital for twenty five days after his heart transplant. As with any surgery, there were complications. RIght after his transplant, Johnny needed a temporary pacemaker because his new heart was suffering from what is known as donor sinus node dysfunction. Which means his new heart was not able to beat well enough on its' own. . This over time has resolved itself. He also developed atrial flutter which made his atrium beat irregular and in order to get a normal heart rhythm again, they had to shock his heart. It is called cardio conversion. This also seems to be improving with time. Furthermore, Johnny, at sixteen years of age, needs to take a significant amount of pills each day so that his new heart will not be rejected. He had weekly appointments for the first two months and now he goes for biweekly appointments. Johnny also has heart biopsies that must be done often to check for any signs that his body is rejecting his new heart. It is during this time that Johnny should be focusing on staying healthy so that one day he can play baseball. Instead, he has been given an incomprehensible burden of what all of this is doing to his family. Unfortunately, like all families in this situation the medical expenses continue to accumulated for the Damato family. The primary goal is to keep Johnny's new heart healthy and with that comes a continuation of medical expenses. If you would like to help support the family, you can do so by donating to the family through paypal, or using your debit/credit card. If you would prefer to mail a check, you may do so in Johnny's name and send it to: Rita Damato, 440 Brinkerhoff Ave, Apt B, Fort Lee, NJ 07024.
Johnny's family and Friends are coming together to help him through this difficult time and to raise the awareness for Organ Donation.
Johnny is a sweet, 15 going on 16-year-old boy with an extremely rare congenital heart disease. Johnny was born with Corrected Transposition of the Great Vessels. For the past 15 years, Johnny has led the life of a normal active boy, which included playing baseball. He has always dreamed to one day, play college ball. Nevertheless, we always knew that his dreams could change at any moment. Last summer, our worst fears came true. Johnny began to experience shortness of breath, episodes of passing out, chest pain, palpitations and extreme fatigue. Our visit to his cardiologist was the beginning of any parent’s worse nightmare. We were told that Johnny had moderately to severe right ventricle dysfunction, moderate to severe right ventricular hypertrophy, moderate dilated left sided right ventricle, mild mitral valve regurgitation, moderate tricuspid regurgitation, moderately dilated main pulmonary artery, moderately dilated left and right pulmonary artery and moderately dilated left atrium. In other words, our baby was very sick. Last summer, Johnny underwent two surgical procedures. He had pulmonary banding done in hopes of taking some of the strain off the right side of the heart. Johnny also had a pace maker and defibrillator put in. Unfortunately, over the past eight months, Johnny’s condition has deteriorated. His doctors decided that Johnny’s best hope was a heart transplant. He is currently on an Intravenous medication 24 hours a day that is supposed to make the heart pump better and several other medications. On March 30, 2012, Johnny was listed as a Status 1A with UNOS for a heart transplant. Insurance plans are very costly and do not cover all the costs. There are medications, medical expenses, co-payments, and in-network deductibles, out of network deductibles and countless other expenses incurred in caring for someone you love with a life threatening illness. The battle will continue until Johnny receives his new heart and even thereafter. There will be lifelong medications and required medical treatments that will continue for the rest of his life. Regrettably, Johnny persistently worries about the burden his illness has placed on his family. As a concerned parent, We know that Johnny only needs to concentrate on getting a new heart and one day, playing baseball again. However, we are unfortunately reaching the juncture that so many families in our situation do, and that is what we do with the mounting medical bills. It is for this reason that we are reaching out to family, friends, and the community for their help and support. As we have already mentioned, a medical situation, such as this, comes with countless hidden costs. If you would like to help support the family, you can do so by donating to the family through paypal, using your debit/credit card or paypal account. If you would prefer to mail a check, you may do so in Johnny's name and send to: Rita Damato, 440 Brinkerhoff Ave, Apt B, Fort Lee, NJ 07024. For more information of becoming an Organ Donor; please click on the link: http://organdonor.gov/index.html