OUR JOURNEYS

Patient story

Mary Ann Dahmen

"I try to remember that I have the ability to give love and be loved, and to help others."

My name is Mary Ann. I was diagnosed with pulmonary hypertension in 2006. I was on oxygen since 2002. I was born with Klippel-Feil syndrome and because of that one lung didn't develop right. When I was just 6 days old I had my first surgery, for Hiatal Hernia. I had two more surgeries to tighten my shut-off in my stomach, before I was 13 months old. When I was 6, I had my first surgery for scoliosis and had to have surgery every 6 to 8 months, to replace the rods in my back with longer ones. I got my back fused when I was 13 in 1992. I had my lungs collapse during dental surgery in 1998 so that weakened my lungs more. Finally in 2002 I had to go on O2. Soon after, I started getting sweaty and had more episodes of extreme shortness of breath. Finally in 2006 they did an echo and saw I had secondary PH. They put me on Tracleer which I take today.

My breathing is getting worse, but not my PH. I had a pulmonary embolism in 2009, so now I can only walk a few feet. I'm in a wheelchair. I don't get out much, since I can't drive. I'm also legally blind, and I also wear hearing aids. Driving in a car is hard for me, because my breathing is worse sitting down. I credit the PHA's website for keeping me informed, along with their mailings. There is not a lot of medical knowledge about PH in these rural areas. I try to do my part by telling everyone I see about PH and about PHA's organization.

I still see the good life. I love to cook and bake when I can. I also love to make crafts. I love to start growing my garden seeds indoors, and I have a lot of flowers indoors. I have a dog named Tubbie and lots of cats for pets. I have a deep faith and believe life has a purpose. I have bad days and a few days I feel okay. I think everyone needs to enjoy today because you can't see tomorrow. Life is short. Find some joy in your day. People who can't find joy in their day really need to look around. Whether it’s in a loved one, a pet or a flower, as long as you're alive and safe you can find something positive and worth living for. I get frustrated some days when I'm so short of breath I can't dress myself, then the next day sometimes I can. I try to remember that I have the ability to give love and be loved, and to help others. I volunteer with the local Red Cross blood drive.

My message to you is no matter what your ability, find something you love and do it, even if it's small, every day. As long as you are alive, there's hope. Together we will find a cure.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.