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Raaitjie's Story

"I had a constant heavy burning feeling on my chest and more problems with angina and dizziness. I got out of breath and had heart cramps when I bent down or lay down. This had become a lifestyle."

Raaitjie LockI am a 56 year old female and for the last 28 years I’ve been treated for clotting and transient ischemic attacks (TIA) due to what the scans showed as a patent foramen ovale (PFO) and a heart murmur. I’ve been on a high dose Warfarin for 11 years now. I slowly felt like I was getting older the last few months. I had a constant heavy burning feeling on my chest and more problems with angina and dizziness. I got out of breath and had heart cramps when I bent down or lay down. This had become a lifestyle.

It was not easy breathing when walking uphill or climbing a lot of stairs. I felt blessed because I could still walk on a slow pace for quite a while on straight paths.

Finally, went to see a doctor about the feeling of pressure and a pain that moved down my arm. He sent me to hospital for a lung scan and electrocardiogram. He saw something that could be signs of a heart attack and the lung scan showed pneumonia. I was admitted to the hospital and some tests were done that showed that there was not enough oxygen in the blood. I should try and breathe deeper/slower.

Went for further tests to rule out clots in the lungs and an echocardiogram indicated a pressure of 59 mmHg and showed a little PFO again. I was diagnosed with pulmonary hypertension (PH) on 29 July 2012.

After the results came back our doctor told me that it was time to fix the hole. He explained that the PH could be fatal if not treated and they are sure that the PFO contributes to the pressure. He sent me for a bubble test at the cardiologist. No hole was found! Went to the hospital again to where they put a device through my throat for a closer look at the heart. The pressure was still there but, yet again, no hole was found. Three previous scans in three different countries (South Africa, New Zeeland and Australia) showed there was an opening.

They did find the origin of the clotting though: popliteal vein compression syndrome. When the left leg is kept straight it cuts the blood flow completely and blood pools. So the cardiologist decided to wait a few months to see if the pressure would come down. I received no information about the condition from the cardiologist. I was scared and unsure what to do.

I went back to the visiting doctors in our hometown to ask if there was something I could do to bring the pressure down. He answered that it is too difficult to explain to me. He got up and told me, “I am sorry that is all I can do for you.” He left even more scared and unsure of the future or any treatment involved.

Meanwhile, I met Denneys Niemandt through the internet through his awareness campaigns and joined PH Australia. I talked to Joan Godber and was advised to go to Prince Charles for more tests and possible treatment. I had a referral letter posted to them and I’m in the process of waiting now while surrounded by a lot of PHriends with PHenomonal hope for a future.

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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.