OUR JOURNEYS

Patient story

Lora Moranti

My name is Lora and I was diagnosed with PPH in July, 2007. My twin sister was diagnosed 15 years ago and had a double lung transplant 13 1/2 years ago. My mother died at UCLA in 1964 from a pulmonary embolism caused by the injection of contrast to see what was wrong with her lungs. Her diagnosis was made at the time of her autopsy. So you can say "it's all in the family.”

I met my husband 9 1/2 years ago and have been married for 7 1/2 years now. I had told him I would not be able to give him any children as I was trying to prevent getting PPH. He was fine with that as he already had a daughter and we could always adopt if we wanted.

Life was going great until January/February of 2007 when I started noticing small things at the gym. I had to rest more between sets on the weight machines and I was starting to have trouble on the treadmill. I was tired all the time and decided to have my thyroid checked again, as I have been on thyroid medication for hypothyroidism for a few years now. Results came back and my medication had to be increased twice. Still wasn't helping. In April of 2007 I found I couldn't run the length of six houses one night helping my husband get his motorcycle home when the battery died. I sat on the curb at the corner because every time I stood up I almost passed out. It took me almost fifteen minutes to feel OK enough to get home. A week or so later I was walking up the escalator stairs at Target as the escalator was not working. I got to the top and almost passed out. I grabbed a cart and walked slowly to the cards section to pretend I was looking for the perfect card hoping no one would notice I was having a problem.

I called my primary care physician and he had me come in the next day. He knows about my family history so we started testing to rule out PPH. He didn't know much at all about PPH and he said that my symptoms were much worse than my test results and sent me to a cardiologist. My husband went with me to that appointment as it was the same cardiologist my father-in-law was seeing. He looked at all my test results and said they were indicative of PPH and would schedule me for a coronary angiogram. I started to cry. He said we caught it early because of my family history of the disease.

When the angiogram was finished, I asked the surgeon performing the procedure if I had PPH. He said yes and that it was a severe case. So all the precautions I had been taking did not prevent me from getting the disease. A couple of days later my husband came home from work to find me crying. I told him I was sorry I destroyed our family and I was sorry about all the money we were now going to have to pay for my prescriptions. He is such a wonderful man. He said not to worry. We will deal with it and life will go on. He is very supportive as is all the rest of my family and friends.

I am now under the care of Dr. Shelley Shapiro at UCLA. She is a wonderful caring doctor. She and her staff are my saving grace. We have my PPH under control with medication (100mg Viagra 3x daily, furosemide, lanoxin, and potassium). I am also taking part in a research study involving Ambrisentan (endothelin receptor antagonist). I call it a miracle drug. I am now walking up 3 1/2 flights of stairs once a day at work. Normal every day activity has become second nature again. I have moved from Class 3 symptoms to Class 2 and am able to walk around like I used to.

To anyone else who is newly diagnosed—keep up the faith and stay optimistic! It helps. So do family and friends and of course the man upstairs!

 

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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.