Jenna Lowe was a guiding light in the landscape of Pulmonary Hypertension in South Africa, young, bright, beautiful and courageous she became an activist for the condition shortly after she was diagnosed in 2011.
Jenna was an extraordinary child. She had a gentle strength, remarkable beauty and compassion, exceptional intellect and an enviable command of the English language. She was an avid reader from a very young age and a published author by the age of 10. Not only ways she bright and beautiful, but her quick wit, engaging inquisitive nature and love of a challenging debate or discussion made her a pleasure to be around. Jenna had big plans and big dreams and the potential to reach them … then, at the age of 17, she was diagnosed with Primary Pulmonary Arterial Hypertension (PPAH).
At 16 our vivacious and energetic child started to become consistently tired with shortness of breath. Many doctors’ visits saw Jen being misdiagnosed with Asthma. It was a relief to find an answer and, asthma medication in hand, Jen was able to go ahead with the 3 month educational exchange that she had been selected for in Sydney Australia. Jenna came home dramatically worse. Her breathing was more laboured ever, she tired really quickly and could no longer walk more than 10 meters without collapsing with breathlessness. We started a desperate search for the correct diagnosis. Many months, doctors’ appointments, blood tests, X-rays and other tests led to a nuclear VQ scan showing what looked like many blood clots on Jenna’s lungs. A catheterised angiogram confirmed elevated pressures in the lungs and a final diagnosis of an extremely rare version of Primary PH was diagnosed. This little-known, degenerative and life-threatening condition changed Jenna’s life – all of our lives – forever.
The impact on all of us was massive … Jenna deteriorated rapidly. By mid 2012 she was using a mobility scooter to move around, as she could no longer walk and distance without becoming completely short of breath and putting strain on her heart. By the December Jenna was on supplemental oxygen 24 hours a day. Regardless, she participated in (and won) the National Public Speaking Championship for Persuasive Speech during her Grade 11 year, and was made Deputy Head Girl of her school in her Grade 12 year. Every week she needed to sleep for longer and longer and she became increasingly short of breath.
Jenna was on Warfarin, Revatio and Bosentan - we were constantly filling in forms or reams of section 21 paperwork in order to bring in the drugs and medical supplies she needed into South Africa. We managed her INR levels with rigour (there was concern that there may be an element of Chronic Thromboembolic Disease in her condition), planned her diet extremely carefully, increased her levels of oxygen and researched the latest advances in treatment daily. We knew that medically there were three pathways to treatment and we were determined to get her everything she needed to increase her quality of life and her longevity. I was determined but the medication was expensive, and although our medical aid was trying to be progressive the imported medications were not covered. So we began holding large fundraisers to cover the costs. As a family we embarked on a national awareness campaign for Pulmonary Hypertension in South Africa. Our Jenna had become an activist … she was determined that other patients get earlier diagnosis and, therefore, better care.
At the end of 2013 Jenna’s condition had worsened. She was constantly bone tired but, with true gusto and grace, wrote her matric exams regardless. Every day we would transport her with her mobility scooter and a large home oxygen concentrator to write those exams – in true Jenna style she graduated with seven distinctions and 11 academic prizes and was in fact one of the top 30 students in the Western Cape. Despite her determination and academic strength her physical condition continued to worsen and we needed to do something drastic.
In Dec 2013, with the help of Discovery Health, Prof Wilcox at UCT Academic Hospital, and our family fundraising efforts, we flew Professor David Badesch, Director of the Pulmonary Hypertension Programme from University of Colorado Hospital in the US, and his nurse practitioner to South Africa. I had been liaising with him for many months on Jenna’s treatments and now the plan was to start our girl on Intravenous Epoprostenol, also known as Flolan. Flolan is a constant IV infusion. It is an extremely expensive and intensive management drug that is delivered in minute amounts, through a special pump, intravenously into the right heart chamber. We knew that starting this hectic programme would mean we would be responsible for it daily and there would be no support available as she would be the only patient in SA on the drug. Overseen by Prof Badesch from the USA we started Jenna on Flolan in December 2013 – a permanent port was inserted into her heart, with would be the central line for her 24hour a day infusion. The specialist pumps were ordered, the cartridges and lines imported from Australia and the medication negotiated through Glaxo Smith Kline in the UK with special Section 21 approval. Jenna was the only patient in Africa to be on this drug. Given that it only had a 3 ½ minute half-life, these were scary, high adrenalin times. Stuart and I built a sterile hospital room at home in which to mix the drug daily. Mixing would take approximately an hour a day – an exacting 35 step sterile process that only we knew how to do. There was absolutely no room for human error, as errors could prove fatal. I set up detailed spreadsheets so that every aspect from the ordering of equipment and drug to daily mixing and keeping medication cold could be monitored … running out of any one component was not an option. Jen’s IV Epoprostenol had begun. This was the bridge to a transplant; the only way to buy our girl more time. Once a patient is on Flolan you don’t come off it, not for a minute.
Regardless of all these efforts Jenna still worsened and it was May 2014 that it became clear she needed to be urgently listed for a double lung transplant. The journey was far from over. It was then, with dread and horror, that we realized that South Africa has one of the lowest organ donation rates in the world! Only 0.3% of the South African population were organ donors, and yet statistics confirmed that at least 4,300 South Africans are desperately awaiting a transplant on any given day. Jenna was no victim. She became passionate about the plight of those awaiting a transplant. At this point she was pretty much bed ridden and yet a hugely powerful individual. We knew that the only way to increase the hope of Jen getting the transplant she so desperately needed was to raise awareness of this dire situation. With the help of some incredibly talented people, the ODF, Spur Foundation and the team at Mullen Lowe Jenna launched her astounding successful '#Get me to 21' media campaign. In its simplest form it was an invitation to the entire nation to attend Jenna’s 21st birthday party. All you had to do to be there was sign up to be an organ donor. The real invitation was to help save lives …The campaign went viral within 24 hours and South African organ donation rates increased by an astronomical 287% within the first few months of her campaign.