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Patient story

Jessie Follett

Lovin’ My Life with PH

"Just because we have PH doesn’t mean we are destined to die. We are destined to LIVE!! If you would have asked me years ago where I would be right now, I would have said, ‘dead.’ Not today. Now I can say with confidence that my future is full…. I am a wife, mother, daughter, bowler, knitter, scrap booker and friend. I am not PH!"

- Jessie Follett

When you are a little eight year old girl you have big dreams. Dreams of being a ballerina, a princess or a teacher. You don’t think about going to bed and never waking up again. You don’t think about leaving your family, friends and your favorite Cabbage Patch Kid doll. I did. I was diagnosed with primary pulmonary hypertension in 1988 as a scared little girl that instantly had to grow up. I cried for my mom to sleep with me in case I didn’t wake up. I took all the attention from my little sister who didn’t know what was wrong with her big sister and best friend. My parents divorced and everyone looked at me with those pity eyes. “That poor girl, she’s so young.”

I began calcium channel blockers to control my pulmonary hypertension (PH) throughout my teenage years. I felt like an outcast all throughout school. I couldn’t participate in gym classes, sports or sometimes even slumber parties. I gained weight and used oxygen when I slept. I only had a couple friends that stood by me and cared. I never thought I fit in anywhere because thoughts of dying and never having a future were never far from my mind. Even though I went through a bad year or so of rebelling from my doctors and parents by smoking and not taking care of myself, I graduated high school with good grades and my PH was stable.

I became pregnant at age 20 and that was not good for my PH but I decided to have my beautiful daughter, against my doctor’s advice. My PH doctor at the University of Michigan told me I would die if I continued with the pregnancy. I knew God had everything under control and I had a perfect pregnancy and delivery. I had a right heart catheterization in place during the caesarian section delivery.

Things were great PH wise until a year after Brianna was born. I couldn’t carry my daughter, walk to the bathroom or do anything without gasping and occasionally passing out. I was told to get my priorities straight because my health was failing. I was put on epoprostenol in 2003 and that changed my life.

The man of my dreams asked me to marry him. He knew of my PH and of the possibility that I might not have a long future, but he promised to make that future the greatest time of our lives. So far to date, he has kept that promise. My daughter is now ten years old and she is the greatest gift God has ever given me. She is sweet and caring and she loves to take care of me even when I tell her that I am the mom and I need to take care of her. She learned to mix my epoprostenol and she helps me with house work. I love her and my husband so much. I am truly blessed.

I am no longer that scared, frightened little girl. I am a strong confident young woman with dreams and goals for my future. I won the United States Bowling Congress (USBC) Women’s City Bowling Tournament in Muskegon, MI in 2009. I took home six trophies the night of our banquet, but above all I took home the greatest feeling anyone with PH can have and that is “accomplishment.”

The following year, 2010, I won first place at the USBC Michigan State Woman’s Tournament for handicap Singles 3rd Division. I even got featured in the Michigan Ten Pin flyer in which I brought light to PH and organ donation. Just because we have PH doesn’t mean we are destined to die. We are destined to LIVE!! If you would have asked me years ago where I would be right now, I would have said, “dead.” Not today. Now I can say with confidence that my future is full. I am a wonderful mother to a beautiful, PH free daughter. I am a great wife to the most loving, amazing and generous man I have ever met. I am the daughter to the greatest caregiver, friend and giving mother anyone could have. I am a wife, mother, daughter, bowler, knitter, scrap booker and friend. I am not PH! I know my future is not guaranteed, but neither is yours. I have good days, I have bad days and I have days that I think, “this is the end,” but I never give up being me. Believing in my future and striving for more life is what keeps me going.

P.S. A little Viagra helps, right!!??

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.