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Patient story

Linda Parshley

"The doctor assured me to be patient because I’d see some results soon. I went back and insisted that I was not getting better. I was unable to go anywhere alone! My husband would have to drop me at the door to a store and even then I could not make it around inside the building."

- Linda Parshley

I have always been a relatively active person considering my so called disability. I had been suffering from shortness of breath since I was a toddler. My mother realized something was not right with me and continued seeking help ‘til finally

she was told that I had tuberculosis (TB) that was possibly picked up from an elderly neighbor. The x-rays always showed that my right lung size was not fully developed and was about a third of the proper size. Well, I never was big on sports anyway, or cared about running up hills.

Aside from that I led a regular life. I learned how to swim at about eight and I started singing in local theater groups. I developed my own breathing technique. Throughout school I still went for my yearly x-ray and still lived an active life with friends & family. After high school, while working in fast food places, I had what we thought was an asthma attack. After getting it under control, I was put into Deborah Heart & Lung Hospital in New Jersey for a week of evaluation. Nothing was found to be different than what they thought they knew already. My right lung was partially working due to damage from scar tissue from the TB.

I had my first daughter at 22. It was a natural childbirth and I used my own breathing techniques. I was a real hands-on mom. Then, after getting married, I had my second daughter at 27. It was also a natural child birth. I was always challenged with shortness of breath, but was still an active young wife and mother. I camped every weekend in Pennsylvania. I walked, swam, sung in church choirs, and went fishing in Montauk, New York with friends. I was a very busy and active person. I suffered from terrible seasonal allergies from age 13 to about 34, which sometimes affected my breathing. A prescription allergy pill usually did the trick.

"It’s been four years since I was diagnosed with pulmonary hypertension. The doctors can’t believe I made it ‘til this age and through two natural childbirths."

- Linda Parshley

It was at that time that the doctor said I had asthma. I used a rescue inhaler before activities or during high allergy times. In my late 30's I started getting bronchitis during the winter months. I had never been sick other than an occasional cold so it was difficult for my breathing. Within a few years I got to know the signs and was able to prevent it from getting bad. During those years I had started having some more difficulty with my breathing, but still had never been hospitalized.

About eight years ago now, when I was 46, I caught a full blown viral bacterial respiratory infection. Under the doctors care I was out of work for almost two weeks. He had advised longer I stay out longer, but I would have lost my job. I lost my voice from coughing so hard. It literally took months to recover. The following winter I ended up with pneumonia. This was so much more painful and debilitating than bronchitis. My breathing was so strained. I literally had difficulty walking from my car to my job. My voice was affected and I eventually lost my job because I was unable to talk to customers.

I started on a long road to wellness. I was taking several nebulizer treatments a day and several oral and inhalant meds. I finally went to an allergy/asthma specialist and began taking allergy shots. The doctor assured me to be patient because I’d see some results soon. I went back and insisted that I was not getting better. I was unable to go anywhere alone! My husband would have to drop me at the door to a store and even then I could not make it around inside the building. Even at home getting to and from each room was a struggle. I tried to go about my everyday schedule--cooking, cleaning, laundry because I was used to keeping an immaculate house.

"I just want to speak to others about what the day-to-day stuff is for each individual. I have a real testimonial to share if anyone is interested. I realize I am a bit long winded. My family will tell ya that’s just me!"

- Linda Parshley

Finally, I realized my oxygen levels were very low and I was put into Holy Family Hospital for five days. They sent me home with oxygen and the doctor included asthma shots. I felt somewhat better than I had for two years, but was still having more bad days than good. Throughout the following summer I decided to go to Lahey Clinic. I needed to check all my options to a better quality of life. After being seen several times and undergoing many tests, we spoke about the possibility of removing my damaged lung and receiving a transplant. I qualified with Brigham and Women’s Hospital except for a final couple of tests. I went to see Dr. Akmal Sarwar at Lahey Clinic. He had an echocardiogram done and a heart cauterization.

It’s been four years since I was diagnosed with pulmonary hypertension. As if that was not shocking enough it seems that I have no right pulmonary valve. None. It wasn’t damaged, it was just not ever there. It is a birth defect that was never spotted. The doctors can’t believe I made it ‘til this age and through two natural childbirths. I was put into Lahay Clinic and was put on Flolan with a Hickman line out of my chest. Within a few days, the difference in my breathing was been miraculous.

It has been four years now and not without its ups and downs. Throughout this whole journey I have always believed God’s hand was in my life. I have a wonderful family, wonderful friends and I'm alive. I just want to speak to others about what the day-to-day stuff is for each individual. I have a real testimonial to share if anyone is interested. I realize I am a bit long winded. My family will tell ya that’s just me!

 

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