5 years ago by chance they found out my husbands pulmonary artery was enlarged. They done test after test and could not find a cause. So they referred him to Duke. We went there and had a heart cath put in and it came back normal. The cardiologist thought that maybe My husband had cushions syndrome and referred him to a endocrinologist. That test came back negative and he was released from that doctor as well. Still no answers.
A couple years later he went to work and started feeling "funny" His coworkers found him laying on the pavement in the parking lot. He had tried to stand up and collapsed and was shaking. I called 911 and they came and took him to the hospital. They found nothing!
They sent him home with a monitor for a month and twice a nurse called concerned about what the monitor was saying, but the doctor told us the results were fine.
By this point we are getting irritated! Another 6 months goes by and he goes to the ER for his arm and once again they admit him for his heart. 3 days still no answers.
6 months ago he started having chest pains. The doctor stated all the moniters and equipment are telling them he is in heart failure and they want to observe him overnight.... we stay and the next day they let him discharge him once again. We asked the doctor what is going on and all he states is nothing to worry about right now.... when do we worry about it? How do I get answers with out bankrupting us? What do I need to be looking for? should my husband even be working? What do I need to say to his Doctors?
It sounds as if your husband's doctors are having difficulty putting his whole complex picture together. I can't say that based on your review I can either, but you need to have someone knowlegeable and interested review the prior test performed ( including the test performed at Duke) to see exactly if there is pulmonary hypertension, RV dysfunction, and whether he is in fact in heart failure.
If you can't find such help locally, or even in a regional center, I can refer you to a congenital specialist at our institution. He is very experienced with less know forms or heart and vascular disease, including congenital heart disease, and would certainly be willing to help. His name is Richard Krasuski, M.D. and his office phone number is (216) 445-7430.
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