OUR JOURNEYS

Patient story

Traci Patnoude

About a year and a half ago, I noticed that I was having trouble walking up our stairs. My baby was one and I could barely carry him up the stairs to his crib. When I did make it to the crib, I had to quickly put him in it and then sit on the floor to catch my breath. I also noticed that my legs felt like they were on fire, too (I'm not sure why). I was 35 at the time, a mother of three boys under the age of seven and fairly active. I had always done some form of activity: biking, hiking, kayaking and so to be this "out of shape" seemed a bit extreme.

I finally got the nerve up to go to the doctor, though the day of the appointment I almost canceled thinking I would be told that I was just out of shape...thankfully my husband asked me to keep the appointment. I had a great doctor who put an oxygen monitor on my finger and made me do laps in the halls until he concurred that something was wrong. I then had six months of testing and different doctor…I was even told by a cardiologist that I didn't have PH. Even though my PCP had diagnosed me already, he said I had a higher chance of getting struck by lightning! How frustrating! You have this incurable thing, oh, no you don’t, must be asthma, or maybe you’re hyperventilating…I was told many things back and forth until a heart catheter confirmed PH. I'm fortunate to live in Michigan and be close enough to go to the doctors at University of Michigan. So, in August of 2008 I was officially diagnosed. I'm also fortunate that my body responds to the oral medication. I take Norvasc, Cummadin, and Revatio.

At first I was elated that the medicine was working. At the time of the heart catheter, I could only go up three steps before I had to stop and catch my breath so once the medicine began to work I was thrilled. Now I'm dealing more with the reality of living with PH forever…I'm finding it difficult not being able to maintain the active lifestyle that I was used to. I find myself sleepy often and simple tasks can feel so overwhelming. I find that not being able to really talk to people about it is disheartening. I try to educate my friends but it's such a strange thing for them to grasp…we PHers look fine and the old theory of exercise more to make your heart stronger doesn't really apply here. I've been trying to exercise some but I find myself confused as to how much I can do…how far do I push myself, am I doing more damage than good? My chest pretty much aches everyday and does a job of reminding me of my PH and often it just scares me. I'll be meeting with my doctor next month with tons of questions. Now that I've lived with this for a year I have a good idea of what to ask. Thanks PHA for providing this journal!

 

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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.