OUR JOURNEYS

Patient story

ColleenColleen

November 17, 2008

My name is Colleen and I am a 29 year old wife, and mother of a wonderful two year old boy. I am a daughter, a sister, and a granddaughter. I am surrounded by incredibly supportive family and friends. I don’t look or even act sick, but I have Primary Pulmonary Hypertension.

Prior to my pregnancy, I was extremely active. Fast forward to a few months after the birth of my son. I began to exercise to try to loose the baby weight. Throughout the year of 2007 I became increasingly short of breath on exertion, which I chalked up to needing to get in shape. That winter I came down with pleurisy (an infection in the lining of the lungs). I had three bouts of the illness in a little over a month, with the final one landing me in the ER. There, the workup showed an enlarged heart and a slightly abnormal EKG. I was told it was probably nothing, but to go see a cardiologist “just in case”.

That “just in case” turned into a nightmare very quickly. On January 2, 2008 I received my diagnosis. I made the mistake of coming home and looking it up on the internet. Thanks to vast amounts of misinformation, I thought I was going to die, and soon. Words like “progressive and fatal” are common when reading information about PH, and there really are no words to describe what it is like hearing them applied to you. News like that would rock anyone’s world. As the mother of a young child all I could think of was my son, and how he might not have a mommy to grow up with. I decided, in true stubborn Irish fashion, that this was unacceptable.

The crazy thing about all of this is that on most days I feel fine. I won’t be climbing mountains or taking a jog anytime soon. I’m not a big fan of stairs. But, I keep up with a two year old and all my normal activities just fine. In the back of my head I always know I am sick. I know that the nature of this disease is I will probably worsen as time goes on, but often it is hard to believe.

Life expectancy used to be 3 – 5 years from diagnosis. Thankfully, the treatment for PH has come an incredibly long way in recent years. Now I, the girl who barely used to take aspirin, am on three different drugs. I sleep with an oxygen tube in my nose. All of these medications have improved my quality of life, and will probably prolong it to some degree. However, they won’t save me, they won’t cure me. I need a miracle for that. I don’t care if the miracle comes from God or the breakthroughs of medicine (are they one and the same?), but that is my only chance of survival.

Through all of this, I feel blessed by other miracles. It is a miracle that a nasty “bug” led to my early diagnosis. It is a miracle that my cardiologist was on the ball enough to find the proper diagnosis and place me in the hands of a great specialist. This diagnosis can take years to get, and I got it in a few weeks. It is a miracle that I am even alive. There is about a 50/50 chance of surviving a pregnancy when you have PH, and I made it. Now, I am waiting for the miracle of my cure. I have faith that I will get it.

 

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