My name is Kim Foulston and I am 44 years old. Throughout the years I have not been a stranger to pain, regular doctor visits, heaps of medication, blood tests, hospitalizations, drips, biopsies, swollen ankles from water retention, absenteeism from school and later the workplace, and disappointment when unable, at the last minute, to attend functions. I am accustomed to extreme fatigue, no energy, and always getting infections.
You see, in 1989, when I was only 15 years old, I was diagnosed with the auto-immune disease, systemic lupus erythematosus. Instead of the immune system fighting infection, it turns on itself, in my case attacking my skin, joints, tissue and kidneys. Cortisone was used to suppress the immune system and when suppressed, I was prone to infection. A vicious circle!
In the years that followed I learned to accept what came my way. I overcame swallowing handfuls of pills without gagging and also my fear of needles. I watched my friends as they married and had babies. It was a bitter pill for me to swallow, knowing and accepting that I would never have children of my own. I was fortunate enough to have a very caring and understanding family who stood by me and supported me financially and emotionally.
I had a remarkable relationship with my rheumatologist. I would often tell him I felt I needed oxygen and also shared that I would become breathless whenever I walked up a slope. He told me it was probably due to the fact that I was unfit and he suggested that I exercise more. At this time I was under the care of a pulmonologist as well. I would struggle through my lung function tests. She was treating me for asthma. After many, many months of continually struggling with shortness of breath, early in 2011, I took myself to my general practitioner, who examined me thoroughly and called my mom to say that I needed to see a cardiologist without delay.
He set up an appointment for me at the Union Hospital, not too far from my home. As it was a long weekend and he was going away, the cardiologist admitted me into the Coronary Care Unit (CCU), and I was under the care of a specialist physician. It was then that I was diagnosed with pulmonary arterial hypertension, which is secondary to my SLE.
After the weekend, I was referred back to my pulmonologist who was at a hospital some distance away. I was admitted and seen by a cardiologist at that hospital. Numerous tests were done, confirming the diagnosis. I was put onto revatio 20mg three times a day. I was sent for a sleep study and declared to have sleep apnea as well. I began using a CPAP machine.
I felt the benefit of the revatio almost immediately although obtaining it from the medical aid has never been an easy feat. During one of my visits to my rheumatologist, he asked me how long I would be on the revatio, thus indicating that he wasn’t all that familiar with PAH. At that point, I suggested a “second” opinion with a cardiologist to which he agreed and referred me to a very handsome cardiologist who could have made any lady’s heart skip a beat!
Once more PAH was confirmed and it was he who steered me in the direction of Milpark Hospital, telling me about Dr. P.G. Williams and Professor M.R. Essop, who had a keen interest in PAH.
So began my journey under these two specialists. It’s been more than seven years now since my diagnosis and almost six years under their care. About two years ago his patients were put onto dual therapy when medical aid finally agreed to sponsor bosentas (generic of tracleer.) It was brought into the country from India and fell under a section 21 drug. Every six months we had to get authorization to continue its use and pay a fee to the Medical Control Council.
I cannot thank my father enough for having me as a dependent on his medical aid and for the hours and hours he has had to spend on the phone to Discovery sorting out all the issues, and my mom for walking the long road with me and being my best friend. Dr. Williams increased my revatio to 40mg, three times a day, and Professor Essop has performed two angiograms, which revealed that the disease is irreversible. The last one showed the pressure in my lungs to be 90.
The PH patients are all being changed over to cialus (in place of revatio) and volibris (in place of bosentas, as volibris has now been registered in South Africa.) Some patients are being treated with iloprost, which has to be administered through a port.
I have made, and sadly lost, many good friends with pulmonary arterial hypertension. Some have undergone double lung transplants, others have passed away suddenly. It makes you think how fragile our lives are and how we need to live each moment to the fullest. I have decided that I do not want to go the route of iloprost nor transplant, but want to live out my days with the best quality of life as possible.
It saddens me that I can no longer fly overseas, but I am thankful for the trips I made prior to diagnosis. I now travel from the comfort of my couch, on my oxygen, visiting places all over the world through the television screen. I sleep between12 and 14 hours each night, waking up toward lunchtime the following day. I rest when tired, and try not to exert too much energy, as even climbing the stairs in my house is a challenge.
I constantly remind myself that there are others worse off than myself. I don’t like to part on bad terms with family or friends as life is uncertain. I am friendly and like to bring sunshine, smiles, and laughter into peoples’ lives when I initiate conversations in the shopping center.
I am so thankful for the support I receive, for the dedication of my doctors, for the new drugs that are slowly, but surely, being used in South Africa, and mostly for my God who loves me and has carried me through all the tough times.