Spotlight on World Pulmonary Hypertension Awareness
May 07, 2018 02:34PM
Pulmonary Hypertension (PH) means high blood pressure in the lungs. According to PHaware.com, it is a “rare, complex and chronic lung disease, which currently has no cure. PH makes it difficult for a patient to receive adequate oxygen, forces the heart to work harder, and can result in heart failure.”
Symptoms, which include shortness of breath, dizziness and fatigue, are often confused with asthma or COPD due to the similarity of symptoms. Currently, there is no cure for PH, although treatment options are available.
Tristan is a 9-year-old PH patient who was diagnosed a few weeks after his seventh birthday. He is also my son. He is fun, smart and full of life. We live in Dalton Gardens and Tristan is currently homeschooled and also a part-time student at the Cornerstone Christian Academy in Post Falls. He loves reading, Minecraft, Pokemon, planes and flying and science. He is also a great advocate for PH awareness as he doesn’t allow PH to define who he is or what his life can be.
Tristan knew that something was wrong with him because he often felt short of breath and tired all the time. One day, he told me he was going to pass out and that he needed me to carry him. My husband and I took him to Sacred Heart that day. I interviewed Tristan to help create awareness about Pulmonary Hypertension, and to show that even with a PH diagnosis, you can live a healthy, ordinary life, as my son demonstrates on a daily basis.
What kind of treatments are you on? I take four oral medications every day. I am lucky that I don’t have to use intravenous or subcutaneous medicines. I also use oxygen at nights or when my oxygen saturation is low.
How does PH affect your life?
I can’t walk or ride my bike for too long because I get short of breath. I had to quit school for two years; this year I started going part-time. But during the flu season, I am staying home. We travel to Seattle often for PH appointments. But I love flying, so that’s great! I have to have blood draws, x-rays, hospital stays, and lots of doctor’s appointments. I get a Bead of Courage for each of these, so that’s cool, too.
Other than that, my life is the same. I love to play Minecraft and Pokemon and do science experiments because I love science. I also love cooking, playing with my friends, and spending time with my pets and chickens.
I have a Facebook page called This Kid Says (@thiskidsays) where I write reviews about restaurants, churches and other places and tell people if these places are good and kid-friendly. I also have a YouTube channel where I post videos about everything in life. I change its name often. Now it is Mallow Marsh. The name is from Pokemon.
Why is awareness important?
There is no cure for PH but one day they will find one. We need research for that and research means money. If more people know about PH, more people will donate money to PHA (Pulmonary Hypertension Association) for research.
How do you advocate for PH?
I sell PH awareness bracelets. One of my friends made PH jewelry and key chains; we also made inspirational rocks. I sell those, too. I sold them at the Health Fair in March. My mom and I color our lips blue on May 5th for the World PH Awareness Day and we ask our friends to do the same on that day. Then we put our photos on Facebook and Instagram with hashtags like #PH, #PHAware, #BlueLipsChallenge, and #periwinkleday.
Do you have any advice for newly diagnosed patients?
Don’t be afraid. It’s just a lung disease. Take your medicines and enjoy life until they find a cure.
Have you met other patients with PH?
Yes. I went to a PH Conference in Texas with my mom and dad in 2016. There were many kids and adults with PH. I also met Chloe Temtchine. She is a singer who has PH, too.
Anything else you would like to add?
Yes. We need a cure for PH. Please donate to PH Association so they can have money for research to find a cure.
Ebru Ozgen Oglesbay and her son Tristan are passionate about educating people about PH and raising funds to find a cure for this rare disease. There are currently 14 treatment options for PH for adults, and only one of these is approved for children. For more information or to donate, visit PHassociation.org and PHaware.global/take-action.