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Max Almenas' Fundraiser:

Gran Fondo For Damato

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BENEFITING:

Max Almenas

THE STORY:

Johnny is a 16-year-old boy with an extremely rare congenital heart disease. Johnny was born with Corrected Transposition of the Great Vessels. For the past 16 years, Johnny  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.

In the summer of 2011, 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. 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, Johnny’s condition has deteriorated. His doctors decided that Johnny’s best hope was a heart transplant. He was on an Intravenous medication 24 hours a day that was 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.  Johnny was too sick to attend school for his sophmore year.  He was home tutored.  Image losing more than a year and a half of your life.  But he stood strong and continued to fight.  

 

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. Getting his new heart was the beginning of his new life. It was also a new journey medically.

Johnny was not prepared for all the side affects that the medication caused on his body. The days weeks, and months following transplant have been one of great struggle , pain, and mental and physical challenges.

Johnny is one of the strongest young men I know. This is not only the opinion of his family but of friends, strangers, and his doctors. It is during this time that Johnny should be focusing on getting so that one day he can try to get back to a normal life of a teen ager. Instead, he has been given an incomprehensible burden of what all of this is doing to his family.

He at this point wants to get the message out there to everyone how the whole process of transplantation affects not only the patient but the entire family. He wants people to understand that getting a new heart was the beginning of a whole new journey. A journey that he is grateful for, but a difficult one that causes a different set of medical issues and problems. And it is important that each transplant patient continues to have a great support system to help them through this new part of recovery.

People need to understand the healing process and what the body and mind go through during this time. To spread the word and give people a whole picture of what a transplant patient, what johnny, has been going through these past 7 months.

What he will likely go through for the rest of his life. Today, he goes to school, but misses many days due to doctor's appointments, surgical procedures, testing, and just being sick some days. The school has worked with him and given him the education support he needs so that he does not fall apart.  

 Johnny's primary goal is to spread the word and to raise awareness for the need for organ donors, blood and bone marrow donors. Without the selfless gift of the families who donate their loved ones organs, Johnny and many others would not be with us today.  

One of Johnny's other goals is to help spread the awareness that like with any serious chronic illness come the reality of medical expenses. 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.

This is a battle that continues on all socioeconomic levels. There will be lifelong medications and lifelong required medical treatments that will continue for the rest of his life and the life of all transplant patients. These are not the things a child or a sick adult should have to worry about.

They should only  concentrate on getting stronger  and one day, playing baseball again.  One day he would like to start an non profit organization to help families in medical crisis. He even though of a name for it: Santino's Open Heart Foundation. Santino is johnny's middle name.

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