BENEFITING: Pulmonary Hypertension Association Inc
Jennifer 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. A few months after his 4th birthday, he was diagnosed with Pulmonary Arterial Hypertension (PAH). It came out of nowhere from what we could tell. 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 until a large group of doctors walked into our room. There was, and still is, no cure for PAH. PAH 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 the constricted vessels, 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 PAH was and how it would affect him long term. 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. As we look into the future, we have to do everything in our power to change his quality of life and life expectancy.
In 2015 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. PAH 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 18 pills per day. He manages the side effects very well and takes it all in like a trooper.
Looking back now, we realize how lucky we are. Many people who suffer from PAH take years to get to a correct diagnosis. For our family, it only took one virus. Through awareness we hope to decrease diagnosis times for others, which will allow them to get an early start on treatments and slow the disease progressions. We also need to raise money for research and patient support. We started this walk in 2015 along with a few other adult PH patients in Rochester and will not give up our PHight until a cure is found. Please consider supporting our walk and our PHight. Thank you in advance for your consideration!
Tom and Jenn Garigen