- Posted April 28, 2014 by
Cape Town, South Africa
This iReport is part of an assignment:
Living with a rare disease?
Breathless for Pulmonary Hypertension
Dr Smedema did some intensive tests and after a few days told me that I had Pulmonary Hypertension, and that my right heart chamber 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. But 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 though, oh my gosh, I will never see them becoming young beautiful teenagers!! Due to his previous experience in foreign countries, Dr Smedema knew what and 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. and at one stage a Specialist even told me it was all in my mind. The specific specialist told me to excercise more, and to stop “thinking myself sick”. At the age of 14 years I was diagnosed with Hereditary Spherocytosis and a splenectomy was performed. 5 years later I had a cholecystectomy. Dr Smedema wrote an article ‘Pulmonary arterial hypertension after splenectomy for hereditary spherocytosis’ in the Cardiovascular Journal of South 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.
That is how my life started at the age of 47 with the PH sword hanging over my head. Me and my wife Google’d 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 of the University of Stellenbosch and she supported me by helping me doing a proper research about PH, and therefore I could make changes in my life to live with PH.I also made contact with PH Orginisations in theUnited States and United Kingdom, where I could relate with patients who had the same “dreaded disease”
It is not always easy for me 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.
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 and I am proud to say PHSA became a Nonprofit organization in 2010. My biggest dream for PH in SA is to become as well-known as 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 and be thankful for Family-they sometimes suffer more than you!!
Thanks – and remember – Phenominal Hope!!!!!!!