I Choose to Enjoy Life: Gayle Macis

February 06,2019

More than six years ago, I was taking care of my parents, not realizing I had a medical issue. I was enjoying life and every day I spent with them. Over time, I started feeling out of breath and tired all the time. I ignored what I was feeling because my parents were my priority.

One night, I woke up gasping for breath and was forced to go to the emergency room. That day changed my life forever. After many tests and a right heart catheterization, it was discovered that I had pulmonary hypertension. I was given very little information about what this disease was, but knew it wasn’t curable.

Now, my parents both have passed away, and I am alone. Alone with this disease, and afraid. I had to start asking questions and get a referral to a PH specialist to realize there was hope! My PH specialist made me hopeful, hopeful that a cure could be on the horizon, and meanwhile, concentrate on taking my medication, lowering my salt intake, and eating healthy.

Now, I am 55 years old and on two different medications that have changed my life. I feel like me again! I have lost 50 pounds, I eat healthier (I have cheat days), and can exercise. This has made all the difference in living day to day.

This diagnosis has not become a death sentence. Instead I choose to enjoy life, be grateful, and realize I will not die from PH, I will die WITH PH. These are words to live by, and it helped me move past the fear and the doom and gloom I was experiencing. There are a lot of days that I want to stay in bed all day; no energy whatsoever! I know there are a lot of people who can relate to this. I make myself get up and walk, even if it is down the street or down the hall, movement is our friend.

I feel that having friends with PH has also helped me. I researched on the internet and decided to join a couple different groups for support. The patients and/or caretakers in these groups are living or caring for someone with this same rare disease, and I realize how much we all have in common. We all give each other strength, support, and information to help one another. It means so much when you hear praise not only from your doctor but your PH friends as well.

I have learned more from this group than from my own research and doctors. I would highly recommend joining a support group for anyone living with PH. Our family and friends don’t really understand our struggle, and you tend to hear, “Well you look fine,” or “You do not look sick.” Having PH friends who understand this and we can all have a forum to talk to one another about day to day issues helps.

I am Gayle Macis from Huntington Beach, California, and I have PH.

2 thoughts on “I Choose to Enjoy Life: Gayle Macis

  1. Thanks for sharing your story Gayle! You and I are almost the same age! You are very courageous and an awesome PH warrior!

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