I worked three or four blocks away from the World Trade Center during and after the 9/11 attacks. Several years later, I was having a lot of problems with shortness of breath as I walked home from work. I couldn’t walk without coughing. I went to my family doctor and he sent me to a pulmonologist. About a month later test results confirmed the sarcoidosis.
When I went to the pulmonologist they took an X-ray and said that a lot of the sacs inside of my lungs, which are supposed to work like a sponge, have debris and dust all over them; they’re not working to full capacity.
In many ways CVC is the spokesperson for us,
they go out there and fight for us.
Later on, it started hurting my lungs a great deal, and it even started hurting my heart. The doctor explained that it’s due to a lack of oxygen. A right heart catheterization confirmed the pulmonary hypertension (PH). The doctor told me that this has probably been developing for some time. The PH is all due to the sarcoidosis.
Simple tasks, like climbing a flight of stairs, are daily challenges now. I’m still working, but last year alone I took around 30 sick days. The cold weather in New York hurts my lungs. It’s like squeezing an orange. Sometimes I have no other choice but to stay home from work because when I step outside it feels like the cold air freezes my lungs. I have a lot of problems breathing, even though I have medication.
I feel that a lot of people don’t understand these illnesses. They see you going about and they think, what’s that person walking around with that machine for? But they don’t know how we actually feel inside. People don’t realize how my lungs burn so much in the cold weather, and just to stop outside and hold onto a railing makes it worse.
In many ways CVC is the spokesperson for us, they go out there and fight for us. Sometimes when you have a certain problem or condition, you’re afraid to talk about it because you feel like you’re at the point where you feel like nobody’s there to help you. With CVC, I know I’m not the only one with this fight.
My illnesses have taught me that life is short and every day is a challenge, but you have to find a balance, have hope, and have positive friends and family. That will help you greatly.
To cope with my symptoms I often use rest, laughter and medication. My hope is that down the road, with new technology, and more scientific data and new medicines, all of us with this illness will someday be able to have a longer life.
What our patients have to say
I have severe pulmonary hypertension (PH) due to mixed connective tissue disease. In 2013, my son had just finished his undergraduate degree and my daughter...
I am 55 years old and for 22 years I have had orthostatic hypotension (OH) in addition to numerous other rare conditions. I have been...
When I was 11 years old, living with my family in Florida, I was sitting in the car and suddenly my vision was fading. Then...
I worked three or four blocks away from the World Trade Center during and after the 9/11 attacks. Several years later, I was having a...