Advocates on Steps of Congress 2013
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Diagnosed With Scleroderma a Year Ago

"I ran out of breath, I was not able to take a deep breath at all and got scared because a year before I was fairly active and would ride my bike to and from work (about 6 miles each way) a couple of times per week."

ivette Sinquimani.jpgI was diagnosed with Scleroderma a year ago (May 2013) after I was trying to train for a walk with a group of co-workers and almost fainted walking up a hill. I ran out of breath, I was not able to take a deep breath at all and got scared because a year before I was fairly active and would ride my bike to and from work (about 6 miles each way) a couple of times per week.

I had a persistent and nagging cough for a year and my regular doctor thought it was just allergies. I had been diagnosed with Raynauds about 18 months earlier, but was told it was nothing serious. I went back to my doctor the day after that walk because I still had a little trouble breathing. They checked my heart and it was fine, then he said you probably have a case of walking pneumonia, so I'm sending you to get chest x-rays and I'll call you in the next couple of days. He called me that same day, sent me to a pulmonary specialists and she was the one that asked a lot of questions and said "you are checking a lot of boxes for something called scleroderma". Next was a CT, followed by a lung biopsy and 4 day stay in the hospital. They confirmed that I have interstitial pulmonary disease. I have an autoimmune disease where my own body is attacking my lungs and the base of both lungs had scar tissue. I was put on high doses of steroids, antibiotics... It was very intense and meds made me gaining over 30 lbs. but the cough attacks were much less frequent and I just had my annual CT and the scarring tissue has only grown a small amount. I get very light headed if I try to exercise, even fast walking, so that is frustrating and when they weaned me off the steroids the cough attacks started again, and other meds were affecting my liver, so I'm back on a lower dose of daily prednisone (steroids) and it's kind of controlled for now. I don't have pain like most patients I read about, probably because I'm at a very early stage. So I am grateful and just taking it easy and trying to be aware of all the good in my life.

 

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