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Patient story

Yolunda Barquet

My name is Yolunda Barquet and I am a mother of one son who will soon be eighteen years old. I found out that I have PH in May of 2005. It has been a real struggle for me ever since I’ve had it. I also have pulmonary hemosiderosis, which is very uncommon, since the age of three.

I’m not sure how I got PH, but I do know that it has really changed my life. My energy has left me and there are a lot of things that I’m unable to do for myself. I have been in and out of the hospital so much. I was on Flolan, but that just didn’t work for me. I’ve been on Tracleer, Revatio, Zocor and I just had to be put on Ventavis.

I can remember what happened when all of this took place. I was at my home on Mother’s Day in 2005 and my sisters, my mom and my nieces were all there. I was sitting at the table playing a game and I just passed out. My mom said that she called 911 and when they got me to the hospital I ended up in an ICU.

At that time my pulmonary doctor was shocked at what was happening, so he called one of my specialists at Stanford Medical Center in California. They came to the decision that I needed to be put on medications because I had PH. If it wasn’t for the quick response of my doctor I wouldn’t be here to tell this story.

Ever since I was diagnosed my life has been traumatic and I don’t know how to deal with it. I sit in my room every day and just cry because I feel that I have let my son down as a mother because I’m not able to be there for him like I should. He tells me, “Mom, you haven’t let me down. You have been a very strong fighter,” and that’s all he can ask for. Must most of all I prayed when I found out that I had PH and I told my family that I just asked to be able to see my son go to his Prom, to see him graduate and start his life so that I could see what I did as a single parent. My son is my life and he is the reason that I want to live my life on medication.

 

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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.