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Patient story

Jody Coffey

Hello. My name is Jody Coffey. I live in Rialto, CA. and I have an incurable illness called primary pulmonary hypertension, or PPH.

I was diagnosed five years ago and would like to share my story of this illness with you. It started in August, 2002, when my husband and I were planning a motorcycle trip to Sturgis, South Dakota. The day before we were to leave on our trip I was lifting something heavy and got really dizzy. I had never felt like that before and it scared me, but I shook it off and the next day we started out on our trip.

We stopped in Las Vegas, NV and got a room. My husband left the motorcycle on and I went across the street to a Wal-Mart to buy a bottle of water. When I got to the Wal-Mart parking lot I began to feel dizzy. I remember reaching for a cart that was in front of me and then the next thing I remember is someone removing the cart from on top of me and asking if I was alright. I was helped into the Wal-Mart and asked if I wanted them to call an ambulance. I said no and asked to use a phone to call my husband. My husband and I thought maybe I passed out from the heat so we continued on our trip the next day.

We stopped in Cedar City, UT and got a room at a hotel. The next morning I was going to get my husband and myself something from the complementary breakfast in the office of the hotel. I remember seeing the office door and the next thing I remember is hearing someone asking if I was alright and telling me I had passed out. My husband took me to the hospital emergency room and I was given a bunch of tests and was told they couldn't find anything wrong. However, they said I should not continue on our trip to Sturgis.

We came back home and after a year of doctor visits and emergency room visits I finally went to Loma Linda Medical Center Emergency where I was diagnosed with my illness.

I spent six days in the hospital. I was devastated by the diagnosis and I was scared. I was referred to Dr. Gary Maris, a cardiac doctor, who then referred me to Dr. Gil, a pulmonary specialist. I was put on several medications, Tracleer, Warfarin, Lasix, Lisinopril, potassium and Norco for pain.

My children were devastated by my diagnoses and still are. I have had times when I felt great and other times when it felt like I was going to die, but my three children still want me around so I'm not giving up.

I would like to help increase awareness of this illness so more people can recognize that their chest pain, shortness of breath, poor circulation, and fatigue may be warning signs of pulmonary hypertension.

 

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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.