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Patient story

Carol Smith-Biggs

"My only advice is get a good doctor and never give up. Life is worth living even when you are told you are terminal and won’t be around long. Live every day as if it’s your last. "

My name is Carol. I have pulmonary arterial hypertension (PAH). I guess the first signs were early but were dismissed as asthma. I am 43 and was diagnosed 7 years ago. I went in for a routine check and my doctor said my heart rate had been high for a while and checked my oxygen level. She immediately called cardio and lung specialists who wanted to see me right away. I live 2 hours away from them. I was admitted into the hospital and many tests later was diagnosed with PAH. I spent 2 weeks in the hospital until I was stable and went home on oxygen and Tracleer. When I got the news that there was no cure I thought my life was over.

The lung specialist said I have 3 years at the most. Well, I proved him wrong. At the 2 year mark I found myself unable to breathe even with the oxygen. I went into my family doctor and they checked my oxygen level. It was 66. They called an ambulance and I found out I had multiple blood clots in both lungs. I was on high pressure oxygen for 2 weeks. The meds finally started working and was weaned back down to 3 liters of oxygen and was able to go home 3 weeks later. Since then I have had good days and bad days. But I thank my doctors for being so vigilant to still being here today. The Tracleer has helped with a lot of my symptoms but I am finding I am having more bad days than good ones. I have great family support but I live in a small town and haven’t found any way of connecting with others. I will keep looking though. I will never give up fighting. Yes I am scared but I know God will not take me until it is my time.

Thank you for reading my story. I will keep writing and adding to it as long as I can. My only advice is get a good doctor and never give up. Life is worth living even when you are told you are terminal and won’t be around long. Live every day as if it’s your last. God bless. Carol

 

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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.