OUR JOURNEYS

Patient story

Denneys Niemandt--Chairman of PH South Africa (PHSA)

"I asked my wife twice why the lights were switching on and off in the showroom — I didn’t realize I was having a blackout."

I am Denneys Niemandt, a 52 year old male from the beautiful city of Cape Town in South Africa. My pulmonary hypertension (PH) story started on a beautiful sunny Saturday in September 2006 when my wife Sonja and I went looking for a new family car. At the car dealer I felt out of breath, my chest felt tight and I had a pain in my right arm. I asked my wife twice why they are switching the lights off in the showroom, not realizing I was having a blackout. My wife then took me to the emergency room at N1 City Hospital. They did tests and my electrocardiogram (ECG) showed abnormalities. They told my wife that I had a heart attack and they need to call the cardiologist on duty. Fortunately for me the cardiologist on duty was a Dr. J.P. Smedema, originally from the Netherlands where he dealt with PH patients before. PH is much unknown in South Africa and most of the times misdiagnosed.

Denneys Niemandt with his wife SonjaDr. Smedema did some intensive tests and after a few days told me that I had pulmonary hypertension, and that the right heart chamber in my heart was enlarged. At that stage telling me I had pulmonary hypertension meant as much to me as telling me I had a virus or minor illness. When he explained that it is actually a very serious and terminal disease, it felt as if my world fell apart. At that stage my daughter was 15 and my son was 13, and I thought, ‘Oh my gosh, I will never see them becoming young beautiful teenagers!!’ Due to his previous experience in foreign countries, Dr. Smedema knew how to test for PH.

I told him I was in and out of hospital over the last 20 years with pleuritis, pneumonia, cardiac arrhythmias etc. At one stage a specialist even told me it was all in my mind. One specific specialist told me to exercise more, and to stop “thinking myself sick.” At the age of 14 years I was diagnosed with hereditary spherocytosis and a splenectomy was performed. five years later I had a cholecystectomy. Dr. Smedema wrote an article “Pulmonary Arterial Hypertension After Splenectomy for Hereditary Spherocytosis” in the Cardiovascular Journal of Africa. It was a breakthrough conclusion that the PH was caused 32 years after my splenectomy. One of the reasons was that microscopic emboli were formed in my lungs and that was actually the beginning stages of my PH.

"I was in and out of hospital over 20 years with pleuritis, pneumonia, cardiac arrhythmias, etc. At one stage a specialist even told me it was all in my mind. One specific specialist told me to exercise more, and to stop “thinking myself sick."

That is how my life started at the age of 47 with the PH sword hanging over my head. Me and my wife googled PH and, as you all know, it is only doom and gloom if you read up on the internet about PH. Luckily, Sonja works at the Medical Faculty at Stellenbosch University and she supported me by helping me do proper research about PH and figure out what changes to make in my life. I also made contact with PH organizations in the United States and United Kingdom so I could relate with patients who had the same “dreaded disease.”

Denneys Niemandt and groupIt is not always easy and the biggest challenge for me is that I used to be very active and now I get tired all the time. My youngest, Denneys was 13 years old and very demanding to help him with his sport. We used to play golf and ball games, but soon I had to explain to him that I could not do it anymore even if I wanted to. It frustrated me a lot. The other down part is that I got depressed, because of the limitations of my physical wellbeing and it was difficult to control my emotions. I also think the sudden idea of so many medication and the side effects had a role to play in that.

I got more involved with other patients and also Christine Dickler in America and decided there must be something positive to be gained from my disease. I am the current Chairman of PH South Africa (PHSA) and I am proud to say PHSA became a nonprofit organization in 2010. My biggest dream for PH in South Africa is to become as well-known as it is overseas and to educate and raise awareness for PH amongst the general public, medical aids, government and pharmaceutical companies. I also want to begin support groups in SA that can bring comfort and relevant information to all PH patients. My current medication is Revatio, Ecotrin, Warfarin, Folic acid, Azor and at night I sleep with oxygen. My message to other PH patients is to never ever give up. Accept your condition and don’t fight it. Be thankful for family--they sometimes suffer more than you!!

Thanks – and remember – PHenominal Hope!!!!!!!

 

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NORD

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.