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Patient story

Christopher Anderson

"Dr. Yagan sat down beside me on the bed, put his arm around me and said to me, 'Chris, I can't cure you of this disease but if you will work with me and allow me to treat you, I will absolutely improve the quality of your life."

I was diagnosed with PAH on May 15, 2007. I remember the day as if it was yesterday. I went from being a very physically active individual to being "someone with a very rare pulmonary disease." The prognosis was grim and I was given a life expectancy of three years. I broke down and cried and would have certainly found a dark hole of pity and despair to crawl into had it not been for the amazing care of my pulmonologist, Dr. Mark Yagan. Upon breaking the news to me (and in front of more than half a dozen medical students), while I was sobbing, Dr. Yagan sat down beside me on the bed, put his arm around me and said to me, "Chris I can't cure you of this disease but if you will work with me and allow me to treat you, I will absolutely improve the quality of your life."

It has now been more than four years since my diagnosis (a year + longer than I was told that I would live - although I don't really put any credence in "life expectancy" guidelines) and my quality of life is absolutely amazing. Before I was diagnosed with PAH in 2007, I was an active hiker & bicyclist - I rode everywhere! After my diagnosis it was difficult to walk more than a couple of blocks, an oxygen tank became my constant companion (I nicknamed it "Airon") and riding my bike again was out of the question so I sold it. I understood right away that there were going to be concessions that I had to make in order to live with PAH (oxygen and my friend "Airon" became important components, I would never be able to work full-time at my job again and expensive, life-time medication is a reality) but I refused to give up or give in to PAH and let the disease just "take me". I live alone in Kansas City without family so my relationship with Dr. Yagan was integral to my survival. He has become much more than my physician and my caregiver.

In November, 2009 I began 20 mcg Ventavis (inhalation 6x per day) - and within two weeks I noticed an AMAZING difference in my ability breathe and walk greater distances. I was able to retire "Airon" and go without using oxygen in my daily living and on short (6 block) distance walks to work. By May 2010 I had increased my walking distance to 3+ miles and was still not using my oxygen at all (except during respiratory illness, distress, etc). I was still doing inhalation treatments 6x day of Ventavis (20 mcg). In June & August of 2010 I ran in two 5k races (granted, it was not a continuous pace and I did break my oxygen tank, "Airon" out of retirement and wore it during both races). With the support of Dr. Yagan and after consultation (and a few cardiac tests) with my cardiologist I finally got the approval to get back on and begin riding my bicycle again! I am smart about it, I wear my oxygen and I had to promise not to go on any 10 mile bike rides (well, at least not yet). They say that exercise and PAH are a bad mix - I like to push the envelope and look at this as "one more hurdle I've overcome". This may not be for everyone but I believe that having an obstacle to overcome or a goal to achieve helps to keep me alive!

 

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NORD

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.