OUR JOURNEYS

Patient story

Scott Hughes

It all started back in July 2005 when I noticed that my legs and ankles were swollen. I thought it was just from being on my feet all day, but then I could not kneel. My legs and belly were so full of fluid and I felt bloated so I went to the hospital emergency room. When the nurse put on the oxygen monitor and it was 87, she thought the machine was broke!! Well it was not, so I was admitted right then.

My first stay was 10 days and all the usual tests came back negative. They shot me up with Lasix® which took of 36 pounds of fluid, but still no answers. They sent me home with a prescription for Lasix® and high blood pressure medication. Six months later I was there again because this time I passed out at the lumber yard trying to pick up a bag of cement. I went back to the same hospital 12 days this time with still no results. They told me to lose weight and sent me home. Third time is the charm? Well, not with me. Six months later it was the same story. Seven day stay this time, but this time I was told that I had right side heart damage and was told to seek help elsewhere!!

Well, I was dumbfounded at this point and by now not able to make it to my mail box without fainting. Life could not be any worse, or could it? Well, I was out with family and friends on the night before Thanksgiving in 2006. When I was being dropped off by my girlfriend, my eyes rolled back in my head and I passed out. This time I was brought to a different hospital (thank God). It just so happened that my pulmonologist just happened to be in the emergency room that night. It took some pleading by him to admit me. By this time I thought no one could help.

Dr. Akmal Sarwar of Lahey Clinic in Burlington Massachusetts saved my life that night. He put me on Flolan®. This time it was 19 days at Lahey Clinic. I came out with a Hickman line in my chest and was so terrified of what kind of life I was going to lead having to mix meds everyday, shower and lead some sort of normal life. The nurses from Accredo Health Group, Inc. that showed me how to mix my meds were the best.

Anyway 1 year almost to the day, I was taken off of Flolan® and put on Ventavis® and Revatio®, which I'm told does not happen often. The Flolan® did its job I was no longer in right side heart failure. A year later Tracleer® was added and that’s what I've been on to this day. I have been put on disability, I have also gone back to school for computers, which is something I never would have done if I did not get sick, so there’s always positive things that come out of tough times. As my grandmother used to say "you look at other people’s problems and you hug your own." She was right. Well, god bless you all ........... 

Scottie

 

 

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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.