Our Journeys

Patient story

Nicole Jardim

Hi, my name is Nicole, from South Africa, and I was diagnosed with Primary Pulmonary Hypertension (PPH) in the year 2006. I always felt shortness of breath, dizziness and sometimes even passed out when I did any light physical activities. Then, one evening I was lying in bed and noticed that with every heart beat, my shirt thumped off my chest. I sat there for about an hour just staring at my chest. I had the strangest feeling that something was wrong, so we went to a local general practitioner the very next day.

I went in for my check up, and they immediately said that it was just a chest cold and gave me antibiotics and sent me home. Two weeks later, I was referred to another general practitioner and my first guardian angel, Dr. Leisher. A full examination was done and it was discovered that I had a common heart murmur. Now as common as that is, I got the fright of my life that day because I had never heard of it. He then told me that my heart rate was slightly higher than normal and recommended me to see a cardiologist, the second guardian angel, Dr. P. Sareli.

Two weeks later I went for a check-up with my cardiologist and there he told me that the right side of my heart was larger than my left. I went for numerous x-rays, ECG exams, blood tests and immediately got admitted into hospital. I went for more tests for second and third opinions until finally they diagnosed it as PPH. I was told that if I didn’t go onto treatment as soon as possible, I would have two months to live.

I was then referred to a Dr. Jeffrey Sager, who specializes in PH for medication/treatment in Philadelphia, Pennsylvania because there is no medication available here in South Africa for PH patients. As it was an expensive journey, we did numerous fun raising events to get me to Philadelphia for treatment. We managed to raise the funds and I finally got to the place where I needed to be. In my case, I was lucky because the oral treatment that I tried only works with certain people, and I was one of them. I now am taking Tracleer 120mg, Adalat(Bosentan) 60XL and Waffrin on a daily basis and glad to say that I survived!

I continue to read up on PH and try to help people like me, in all the ways that I can. I feel so lucky to have been lead to the right people at that stage of my life. It was an emotionally draining and difficult journey, but I got through it. I couldn't have done it without the support of my family, friends, to the numerous doctors I met along the way and Sharon Chetty, who I had a chance to chat with over the phone. She inspired me to write about my journey.

I count my blessings each and every single day and live my life to the fullest. I hope one day this message will reach our fellow South Africans who suffer from PPH. Hopefully more people in South Africa will be aware of PPH and treatment become available to South African patients. God Bless and a BIG thank you to the Pulmonary Hypertension Association for this incredible website. I learn something new every day. Thank you!

Nicole

 

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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.