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Patient story

Jennie Thomas

My name is Jennie and I am 54 years old. I have been married to the same man for 37 years. I have two daughters and seven grandchildren. In 1996 I started taking a diet pill and continued until it was pulled from the market in 1997. Shortly after that I was taken to the hospital with an oxygen saturation of 70%, and was told I had congestive heart failure.

Year after year I would be in the hospital for what they said was pneumonia. I had a cough all the time, was dizzy, my chest hurt, could not get enough air and could not walk up stairs. In 2007 I was so weak I could not even stand up over a couple of minutes. I have severe back problems and thought maybe that was the reason. In February of 2008 I was out of town with my husband and woke him up thinking I was having a heart attack. I went to the ER and my oxygen saturation was 62%. I stayed in ICU for seven days. The doctor I had came in the ER and I told him I could not walk across the floor ten feet because I could not get air. His remark was, “what do you expect—look how big you are.” After doing test he came back in and told me I had pulmonary hypertension.

I am now on 5-6 liters of oxygen 24 hours a day and taking Tracleer. I have found a wonderful doctor who understands PH.

I have a 13 year old grandson who lives with us, and in November of 2006 he watched his grandfather (my husband) have a massive heart attack and a code blue called two times in one night. I remember the look on his face that night and I do not want to see that pain again on any of my grandchildrens’ faces. So everyday I try to help them deal with the fact that they are losing their grandma. I try not to cry in front of my husband , daughters and grandchildren. I live in a small town and no one has heard of pulmonary hypertension, so when I tell them they say things like, “oh my wife has hypertension.” So I keep everything inside and act like everything is normal. But it’s not normal. There is no walking with my husband, no planting flowers with my grandchildren, no yelling for my grandson when he makes a touchdown, no laughing till I cry, no more shop till you drop days with my daughters.

The thing that keeps me going is my family. I have learned to take one day at a time, do what really makes you happy, take time with the one you love, and never ever put up with a bad doctor because there are wonderful caring doctors.

 

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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.