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Patient story

Lois Ramos

I was recently told I have PH after having had several asthma attacks that would not clear up even after being on steroids for two months. I knew something was not right. I had asthma as a child, but had not had attacks that caused chest pain and shortness of breath. Even as a child when my asthma was very active I would wheeze, but not become short of breath.

I moved to Florida five years ago from New England so when I first started getting asthma again I was told by the doctors that it was back again due to weight and change of life. When I started feeling very tied and weak I changed my doctor and went for a check up. She said the fluid in my belly and feet was due to my weight and since my weight has been uncontrolled by several diet attempts, maybe I should have gastric bypass surgery. She then sent me to her husband, who is a cardiologist, for clearance. After getting an echo done the tech told me I had a enlarged heart and a slight leak. I said is that what causing by chest pain and fatigue? She said it could be, but the Dr. would discuss it with me. When I saw him two weeks later he cleared me for bypass surgery. I was also sent to a pulmonary doctor for testing for sleep disorders. I was told I was borderline for sleep apnea and I had mild HYPOXEMIA. He said the surgery should help this.

After being cleared I found myself in the ER for asthma several times. In the beginning of September I got a real bad attack and asked my doctor for a referral to see the pulmonary doctor again. She gave me the referral and this time I saw the nurse practitioner. She gave me an exercise breathing test and said I need to get my breathing under control. She put me on steroids again, breathing treatments three times a day, Advair 500/50 two times daily, nexium for my Gerd plavik 75ml because I have prior history of blood clots and had bleeding problems with coumadin. I also take sincular for asthma and simvastatin 20mg for cholesterol. She told me I needed a right heart cath and sent me back to the cardiologist. He repeated the echo first, the same tech said you just had one six months ago I said I know but I’m, very short of breath and the pulmonary doctor thinks I have PH. She said you do, that’s why you have a slight leak in your valve and your heart is enlarged. I asked if this one was the same as before and she said it showed a slight increase in pressure. A week later they did the heart cath and said I have mild pulmonary hypertension. My pulmonary doctor said I needed to go on revatio 20mg. she also put me on Lasix and also gave me potasium pills to take. That was one month ago.

Today my shortness of breath is much better then it was, at first I could not talk and breath right and I could not tolerate walking in my own house. I still have dizziness and chest pain, but I thank God that I’m breathing better. They also sent me to a rheumatologist yesterday who ordered a lot of blood work and x-rays due to my history of one pulmonary embolism and five dvt in my twenties. He seems to think my swelling and joint pain may also be connected to rheumatoid arthritis and lupus. So now I’m waiting after all testing is done I hope to find a doctor who specializes in PH. I feel like I’m on a lot of asthma medicine I don’t need. I don’t like taking a lot of meds and feeling out of control.

I am 54 years old and up until September I worked full time, but since then I have been too ill. Thank God my job had a disability plan and that helps to pay for doctor visits and co-pays for insurance. I live with my husband of 36 years he is also my best friend. I have two sons, ages 34 and 30, and am blessed with four grandchildren, so I have a great support team. I hope my story helps someone. I have read several stories and it broke my heart to learn this disease also strikes young children. But it was a help to read their stories and others. I hope when I’m feeling a little better to get more involved. Thank you and God Bless Everyone.

 

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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.