OUR JOURNEYS

Sylvia FoxPatient story

Sylvia Fox

March 2011

My name is Sylvia, a.k.a. Sureal. I was diagnosed with pulmonary hypertension sometime in May 2010. I spent months wondering why I didn't feel well. I was a typical PH patient: my illness was misdiagnosed more than once. But my persistence and intelligence got me into the hands of a physician familiar with PH, Dr. Pratan Vathesatogkif, MD.

He was a young doctor who, after reading my medical history, diagnosed me in one visit with PH and Lupus. I was grateful to finally know what was wrong with me and that both illnesses can be treated. I guess he suspected it by my symptoms: breathlessness, chest pains, dizziness, fainting, dizziness upon standing, swollen ankles and legs, and the old depressing dry cough. My function classification was class III.

I was knocking at Heaven's doors. God answered. He sent me an angel. I told my doctor one day that I know why he wears white. He asked why. I said, “Because your an angel and God is working through your hands to save me.” 

It’s been almost a year now; my whole life has changed since being diagnosed with PH. I feel better; there is hope in sight. Don't plan your funeral; plan your future. Always hope because it’s there; never give up faith. Nothing is ever hopeless when you are committed. You are your best advocate.

PH is rare. One to two per million people have been diagnosed with primary PH. While I was in the hospital at UCSD Thorton Hospital in La Joella, Calif., I met a friend. We found out we had the same doctor treating us for PAH. We became friends and decided to join forces and fight this progressive and fatal disease together.

Today there is a lot of exciting research that is rapidly advancing our understanding of the causes and mechanisms of PH. This research offers a bright hope for the future. If you’re living with PH now, you should know that today you have more choices and more opportunities than ever. Be proactive about making the right choices. Even work closely with your family, friends, and healthcare providers to make sure you have the emotional support you need, as well as the most appropriate treatment. One important resource you should know about is the Pulmonary Hypertension Association (PHA). This organization offers information and support for PHers and their families. PHA also works to build awareness of PH among healthcare professionals.

I am very lucky to live only 25 miles from one of the finest hospitals where I have a great doctor and team helping me, and I also have my new found friend. We also have our support group where it sure feels good to talk to somebody who really understands what you are going through. I am so happy that I am pulling through this ordeal. Every day I learn something about myself.

Today there is a future for anyone who has PAH. Never give up hope; look towards the good. Plan future events so that you'll know that you'll be there. Don't look back; always look forward. I do stay zealous about my future. I look forward.

Family support is also very important. My illness brought our family closer. They now understand PH and that’s great because at first no one understood. They had never even heard of PAH. I hope the message gets out there. It would save a lot of lives sooner. My family doctor and I became concerned because I was catching the flu, colds and bronchitis. I was sent to a pulmonary doctor in November 2009 who diagnosed me with sleep apnea. I finally was diagnosed with Lupus and PAH. Now I have the right doctors and medicine. I feel pretty good. I feel good about myself and my future. I am engaged to be married to a wonderful man. It’s great to write my journey.

My journey has begun toward a bright future and a bright day. Thank you, PHA, for letting me share my journey with others who can benefit from this and may God bless us all.

Sincerely,

Sylvia Fox, a.k.a. Little S.O.B.

 

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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.