My story began in June 2009. I had turned 26 and for the 2 or 3 preceding years, was experiencing constant tiredness. I had put it down to being unfit. I had also had 8 instances of chest infections the previous year, and was diagnosed as asthmatic. The constant feeling of tiredness had prevented me from putting any concerted effort into completing my Honours degree in Accounting, which I attempted multiple times from 2007 to 2009. I had just moved back home to Richards Bay after completing my articles and had started a job at a local auditing firm. The short 200m walk from the parking lot to the office required a 10 minute recovery period afterwards. The tiredness persisted and one day at home, after having carried a box from one room to the next, I experienced a blackout. It took half an hour for me to recover from the "episode", as we now refer to them. My treating GP at the time, as a precaution, recommended I see a cardiologist. There was only one cardiologist in Richards Bay at the time, Dr R Mulchandani. I was extremely fortunate that the doctor had performed an echocardiogram, which indicated backflow of oxygenated blood into the right chamber of the heart. His initial suspicion was a cardiac shunt but he sent me to Durban for right heart catheterisation. The results came back with a diagnosis of pulmonary hypertension.
I started to read up on the condition. Doom and gloom was the order of the day. I had slipped into a state of depression, trying to come to terms with the seriousness of the condition and having to work through thoughts of my life being over. I wondered if I was ever going to get married, who was going to accept me knowing that I had a terminal condition, was I ever going to complete my Honours degree, etc. After diagnosis, I cancelled my Honours modules.
I was initially prescribed with Adalat (a calcium channel blocker) in Durban, however, this therapy did not agree with me. I experienced more tiredness and water retention. Dr Mulchandani then suggested something which nearly had me fall over... Viagra. "How could a 26 year old be on Viagra?", I was thinking. I began to take the little blue pills and they helped immensely in my day to day tasks. I was also prescribed with Aldactone, Lasix and Warfarin. My medical aid at the time, Discovery, refused to pay for my medication. I was forced to take them up with the Medical Schemes Council, while funding medication out of my own pocket. This was close to R5 000 a month. The Medical Schemes Council ordered Discovery to reimburse me fully as well as continue paying for my medication.
In February 2010, I met with Dr Robbie Kleinloog at Ethekwini Heart Hospital and was put on the list for a lung and heart transplant. While conducting research on the condition, I came across an article about a PH clinic at the Inkosi Albert Luthuli Central Hospital. I met with my current treating pulmonologist, Dr Anish Ambaram, who facilitated my inclusion into the clinic. I met a lot of inspiring patients as I visited the clinic monthly. The PH clinic was started by Sharon Chetty, who was also the founder of PHSA. Sharon was instrumental in interacting with the KZN Department of Health to enable PH patients to have access to necessary treatment. It was unfortunate that she passed away and was unable to witness patients being able to access Revatio, an expensive PH medication, and other necessary drugs and care. This is made available free of charge at the clinic. I never got to meet Sharon, however, I did come into contact with Denneys Niemandt, who wanted to revive PHSA. I became a member of the PHSA committee to assist the organisation and help patients across the country. PHSA provides a source of hope and encouragement to me as well.
My depression continued and I began to search for God once again. It was in these moments that my faith became stronger and God picked me up from my despair. The period of darkness was over and I was not going to let this disease get the better of me. I knew that there was a purpose for this disease and was prepared to let God work in my life to see this through.
I met Veronica in September 2010, just after the depression had passed. I had found a friend and someone to confide in and share my story with. We spent a lot of time talking each others' ears off. We started dating a few months later. In August 2011, I accepted a job offer in Durban and moved. I also proposed to Veronica in November and we were married in April 2012.
In addition to PH, I have also experienced other conditions. I was diagnosed with gout in November 2011, after experiencing fluid buildup in my right kneecap. Tests revealed that my right kidney was significantly smaller than my left. I was then put on Allopurinol to control uric acid buildup. During August/September 2012, I began to break out in psoriasis on all my joints and my face and scalp. The psoriasis was quite severe and cortisone injections and tar treatment proved ineffective. I continued to suffer with psoriasis until September 2013. I conducted some research on the benefits of turmeric and noticed a slight improvement in the appearance of the psoriatic lesions when I began ingesting turmeric water. Encouraged, I started on curcumin capsules and within a month, the psoriasis had cleared up.
Towards the end of 2012, Veronica and I made a lot of lifestyle and diet changes to assist in making the condition more manageable. We started to eat more frequently, up to 6 times a day and we began exercising using resistance training bands, as much physical training as I could manage. At the initial stage, exercise was very difficult but as I trained, it became easier. I had to monitor myself in terms of breathlessness and heart rate to determine my tolerance level and the limits of my body at that time. There were some days when I did not feel up to training as I not had enough sleep or my water balance was not ideal. I rested but I quickly got back into the routine. Our diet consisted of lean cuts of meat, primarily ostrich, venison and chicken breast, and we incorporated super foods such as berries, nuts, peanut butter, green veggies, low fat dairy, and whole grains. I began to lose weight and within 5 months, was 15 kg's lighter. On my doctor's suggestion, I bought a scale to monitor my weight. Having a baseline weight, I was able to determine each morning how much of water I was holding from the previous day. I continue to use this method to monitor my water retention daily.
In May 2013, Veronica and I visited Greece. This was my first overseas trip, something which I didn't think was possible because of the condition. The airline was informed of my condition and oxygen was on standby, if needed. It is my hope to continue in my overseas travels having now been bitten by the travel bug.
I completed my Honours degree in Internal Auditing in February 2014. There was much elation as this process had taken 10 years. My current study is towards the Certified Internal Auditor qualification and hopefully one day, Masters in Internal Auditing.
My venture into alternative therapy with curcumin led me to homeopathic medicine. I am currently consulting with a homeopath as complementary to my current treatment. My current areas of treatment are treating inflammation in the body, as I am certain that progressive inflammation build up over years has resulted in PH, and supporting the heart to pump better and reduce pressures in the heart. Natural medicine that has been available for centuries may assist in curing the condition. It is my current goal to explore these alternatives in a search for a cure.
It is now over 4 ½ years after my initial diagnosis and I'm still going strong. I'm happily married, having just celebrated my second wedding anniversary, something I didn't consider a possibility when I was diagnosed. I have made a lot of changes with regards to my eating habits, exercise, as well as educating myself about the condition and ways to manage it. I believe that a cure is on the horizon and it is only a matter of time before it is accessible to all PH sufferers.
As part of PHSA, my hope is to reach out to other PH sufferers and educate them from the lessons I've learnt personally. God continues to be my portion and my strength and the reason I am still alive today. Having a supportive partner and caregiver makes all the difference. I live every day with the hope of tomorrow and an opportunity to impact the life of some individual.