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.

Tragically, after 6 long and very difficult months spent in ICU trying to recover from the transplant, Jenna passed away on the 8th June 2015. She was 20 years old and just four months shy of her much anticipated 21st birthday. Nothing could have prepared us for the magnitude of her loss. We ache with her loss every minute of every day.

Jenna’s wish was to increase the amount of organ donors in SA so that others could have a chance at life. She was determined to help other PH patients get earlier diagnosis and have access to treatment. She also intended to advocate starting a lung transplant unit for state patients… believe it or not there is currently nowhere in SA that state patients can have a lung transplant. Lung transplants are quite literally one of the most difficult and complex surgeries available, an incredible way to keep a country at the leading edge of surgical procedures. It seemed ridiculous to our Jenna that in SA, the home of the heart transplant, there was no facility for patients with terminal lung conditions and such embarrassingly low organ donor rates.

Jenna affected the lives of so many and her legacy lives on in the form of the Jenna Lowe Trust which acts as a voice for PH patients and advocacy for organ donation. This forum will know only too well that there is a massive gap in support for PH patients and they are often left to deal with an overwhelming sense of isolation and confusion when first diagnosed. The Trust endeavors to fracture this by supporting one of the first PH clinics in South Africa hosted at Groote Schuur. The Trust facilitates monthly support groups which enables patients to share coping strategies and receive emotional support from others who are facing the same predicament. Patient information leaflets have been created and distributed to patients around the Western Cape. The Trust endeavors to act as an advocacy body for PH patients and by educating the public and healthcare professionals, patients can be diagnosed earlier and receive timely treatment and psycho-social support. The Trust also offers support to PH patients in the form of medical devices such as Zimmer frames, medical ID bracelets and home oxygen so they can live as comfortably as possible with this debilitating condition.

The Trust hopes to continue to increase public awareness around the shortage of organ donors in South Africa, address misconceptions and drive registration.

One of the most exciting endeavors is that Groote Schuur Hospital has invested in sending a senior pulmonologist to Australia to complete a Fellowship in Lung transplant medicine with an aim to potentially launch a program at Groote Schuur Hospital. This could make a dramatic difference to the lives of PH patients and other patients living with debilitating lung conditions.

Jenna … we miss you every minute of every day in everything that we do. Thank you for gifting us with your incredible life and presence. You are so loved.

Gabi and Stuart Lowe (Jenna's parents)

For more info about the work that the Jenna Lowe Trust is doing you can follow this link: http://jennalowe.org/jenna/jennas-story/

At this stage, I thought I was paranoid and decided to ignore my symptoms, but by October 2001, I started getting worse. Climbing stairs caused my pulse to race and I felt dizzy and the coughing got much worse, but because the doctors were telling me that they could not find anything wrong, I still ignored the symptoms until my son got the flu and I had to take him to our GP.

The GP heard me coughing continuously and asked me what was wrong and after I explained my entire story, she decided to check my pulse, which was racing. She said that was not normal and asked me to see a cardiologist, which I did the very next day. He requested that I have an angiogram done and then followed it with a VQ lung scan and this was when I was told that I had PPH. At first I was depressed and angry that it was not diagnosed earlier; but as I got more info on PPH, I realized it was not easy to diagnose and especially in South Africa, most people are unaware of this condition.

I was diagnosed in November 2001 and soon after met another patient who had been diagnosed three years prior to me. After meeting him, I felt much braver as he seemed to be doing very well, but a year later he passed away and this was a shock to me. That got me very depressed. I wasn't sure how much time I might have and so I decided to do some research on my own. Through the help of my sister, who is a pharmacist, I got in touch with people via your association and I was encouraged when I received responses from whomever I sent e-mails. This was the beginning of the recovery process.

I decided to do something rather than feel sorry for myself and so after reading about the support groups, I decided to start one here. Through a local community newspaper, I sent an article regarding PPH and what it is was all about and gave my details for people to contact me. To my surprise I had two people call that had been diagnosed with PPH. We then set up a meeting and talked about our medications and this is when we realized that Viagra was proven to help in reducing the pressure in our lungs. Unfortunately, the medical aids and the pharmaceutical company would not sponsor us or cover this drug. We are at the moment trying them again and with a little pressure and our doctor's co-operation, I am sure we will receive positive results. I am currently on Lasix 40 mg and Warfarin 5 mg [½] daily.

I am so proud of being a part of the PH Association and being able to help someone else, that sometimes I forget that I have this disease. I focus on the other members and their well-being and thanks to PHA and their abundant information with brochures, action kits and CDs, I am well equipped to take on the media and make the public aware of this disease. These letters of the patients here will also be sent to the newspapers to print and hopefully people will become more aware of this disease.

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.

God bless.