BENEFITING: Pulmonary Hypertension Association Inc
EVENT DATE: Nov 06, 2016
Tom Garigen wrote -
If you know Tyler Garigen, you know that he looks perfectly healthy. You would never guess that he has a disease with no cure that affects his heart and lungs. If you watch him playing with other kids or his little brother, you might notice that he takes breaks, or breathes heavier than his friends, or that he just stays on one side of the athletic field instead of running back and forth.
A few months after his 4th birthday, he was diagnosed with Pulmonary Arterial Hypertension (PH). Tyler had a respiratory infection that seemed to get bad very quickly so our pediatrician sent us to the emergency room. We thought he had pneumonia and we would be discharged with an antibiotic. That’s when a group of doctors walked into his hospital room and dropped this bomb called PH. We remember thinking, “Ok, so what is the cure and how do we correct this?” But they never gave us that. What they gave us were instructions on how to get oxygen services at home and set up a visiting nurse. We didn’t know much except that he had to keep his oxygen level up. We Googled the disease (really bad idea) and couldn’t believe what we read. The doctors at Strong sent us to a Pediatric Cardiologist who works on a team that focuses on rare diseases.
There was, and still is, no cure for PH. It is a disease that affects blood vessels in the lungs. They are small and constricted, and because of this they carry very little oxygen to the heart. The heart’s job is to pump oxygen-rich blood to all parts of the body, so to make up for this, the heart becomes enlarged and strained from pumping the excess required to help keep him active. Tyler’s heart is always beating as if he were running a marathon.
Slowly through the months we started to realize what PH was and how it would affect him long term. PH often comes secondary to another disease such as Lupus or Scleroderma. For Tyler, it is idiopathic – meaning they have no idea why he has it. As we questioned the long-term effects of the four medicines he was taking we got answers like, “If you want Tyler to live to be 28, these medications are his only chance…” and “If Tyler were born in 2001, he wouldn’t be here today.” Hearing these things and looking at our little boy who by all outward appearances looks totally healthy was extremely difficult. There are so many ways in which we are lucky but as we look into the future, we have to do everything in our power to change his quality of life and life expectancy.
Last year we started Tyler on a new medicine that was not yet approved for children. It had been approved for adults just months before, but we took this route to get aggressive in our battle against the disease. The hope is that we can get his heart into the normal range for a little bit, thus extending his life expectancy. PH gets progressively worse over time and eventually leads to heart failure. We hope to avoid the next stage of treatments as long as possible since they will change his day-to-day life and ability to live life to the fullest. Today, Tyler only needs oxygen when he gets sick but he takes up to 18 pills/day depending on what dosage he is at that week. There are side effects but so far they are manageable.
Looking back now, we realize how lucky we are. Many people who suffer from PH take years to get to a correct diagnosis. We found out early, and that gives us more time to advocate and “PHight” for a cure. We will not take this lying down. We will change his outcomes. Through awareness we hope to decrease diagnosis times for others, which will allow them to get an early start on treatments. We also need to raise money for research and patient support.
There need to be other treatment options. There need to be other resources for dealing with this disease. There has to be a cure. Our plea to you is that you can help us get there.