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Patient story

Dina Hickman

"It's still hard when friends want to do things and I can't because I can't walk long distances, but they understand and it means a lot to have understanding people around. We all need a support system. This doesn't have to be a life sentence if we don't let it!"

It was back in 2006. I was just about to celebrate my 20th birthday and that’s when everything seemed to go downhill.

I was always the overweight girl, so when I started losing weight I was quite happy about it, not worrying too much as to why. I knew my appetite wasn't what it used to be- I hardly ate anymore. Then I noticed I couldn't walk very far without stopping, which scared me, but I just thought it was because I was never big on exercising.

That summer I ended up in the hospital with staph infections on my toe and my tailbone (they almost had to amputate two toes) and by that time I was down to 92 pounds from 160 within months. Now, I was NEVER one to go to the doctor, but that would have been to smart thing to do!

I was forced to go to the hospital once my doctor saw my toes...and that’s where the diagnosing began. First, they thought I was anorexic and demanded that I see a psychologist even when I told them I wasn't. Then, I was put through so much testing and tubes of blood work until they came to a conclusion. I was diagnosed with Lupus (which then gave me the hypertension in my lungs) and rheumatoid arthritis (RA). I didn't know what any of that meant at the time. I just knew I was sick and wasting away in my room all day.

THANKFULLY I found myself some amazing doctors that have helped me get through these diseases. I was put into a study for the pulmonary hypertension in December 2008 and I’ve been doing fairly well. I mean, EVERYONE has their bad days, right?!

My biggest obstacles these days are getting through the lung and chest pain caused by pleuritis (which is from the lupus) and my fingers have become deformed over the years due to the RA for which I will hopefully be getting more surgery soon. It's still hard when friends want to do things and I can’t because I can’t walk long distances, but they understand and it means a lot to have understanding people around. We all need a support system. This doesn't have to be a life sentence if we don’t let it!

Thank you for reading my story. I hope it helps anyone out there who was and is as scared as I was, but you can get through it!

 

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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.