In this life, and particularly, in this industry, we have the privilege of meeting people who intrinsically move you. These angels on earth, however fleeting your time with them is, impact you in a way you never thought possible. Jenna was one of those people. I never had the opportunity to meet her face to face, but the few hours I sat with her mother Gabi and the story she shared – the inspiration, the bravery, the selflessness, the sheer determination to create a better world, unconditional love, the tenacity of a human spirit – is something I personally will never forget.
We shared this story of strength and power and advocacy with you our readers in our Longevity Edition 111 2015. And today, we share it again. And while we quietly mourn the death of a young woman taken too soon; we celebrate the life she led, and the lives she has saved. Through her and the powerful Get Me to 21 campaign, thousands of organ donors have signed up, and continue to sign up.
Jenna will be remembered. She will live on, in our hopes and our hearts. Her legacy has just begun…
Jenna’s story
At 20, Jenna Lowe was doing what most girls her age do: planning her 21st. She had been planning this party for some time; she had even sent out the invitations. In fact, some of you may even have been invited.
What made Jenna’s 21st so special is that when she started planning this party last year, she and her family opened up the invitations – to all of those who would sign up to be organ donors.
Jenna Lowe’s Childhood Success:
Jenna was always an extraordinary child, born with grace and a determination that she could change the world. She excelled at school; she was a happy, healthy child. When she was eight years old, a grade 2 student, she started drafting a story. It was partof the author-author games she played with her younger sister Kristi, a bunch of scruffy handwritten pages. Her mother Gabi and father Stuart, reading the pages, saw something there and encouraged the youngster to finish what she had started – which she did in six weeks.
Three years later, aged 11, The Magic Bissie Tree was published – originally, just 200 copies for family and friends, but word spread, and soon an order of 2 000 was made. Jenna decided to give a percentage of the proceeds to charity – even at this young age she wanted to find her way of making a difference in our world.
Jenna and Gabi got to hear of the Chaeli campaign: Hope in Motion. Founded in 2004 by five girls between the ages of six and 12, the Chaeli campaign started as a way to raise R20 000 for Chaeli Mycroft’s motorised wheelchair. Jenna donated 25% of every book sold to this campaign.
The children’s story is about a little forest girl who stepped on a magic thorn and fell very ill. Together with a witchdoctor, she sets out to find the Magic Bissie Tree, which holds the key to healing her. Little did eight-year-old Jenna know, at the time, that less than 10 years later, she would be on the search for her own “Magic Bissie Tree”.
The PH Diagnosis
Jenna was in grade 10 when she first started to feel the strange breathlessness and fatigue. “It made no sense,” says Gabi. “She was fit, did dancing, squad swimming and pilates.” In March 2011, Gabi took Jenna to a physician. A full examination followed, including an ECG, extensive blood tests, chest x-ray, lung function, echo-cardiogram, and so on. Nothing came back as concerning, and Jenna was sent off on a five-day-long school hike through the Greyton Mountains.
On her return, she was even worse and, in desperation, Gabi took her to the Asthma Clinic. Daily lung function tests followed for a month, and she was diagnosed as asthmatic. Family life continued as normal, but Jenna’s medication dosage kept being changed, as there seemed to be little to no improvement.
Jenna left South Africa in September to do a three-month exchange in Sydney, Australia. But the long trip proved too much. Gabi, going across to visit her daughter, was concerned at how frail, pale and breathless she was. She immediately called the Asthma Clinic and Jenna’s medication was upped again.
When she returned in December, Gabi and Stuart were frantic. Jenna couldn’t walk more than a few metres without being completely out of breath.
The same tests, more tests, still no answers. Shortly before she was due to start grade 11, her doctor did a nuclear VQ scan on her, and within hours, she was hospitalised. And then came the diagnosis.
“Our beautiful daughter had a rare, degenerative, life-threatening disease, called pulmonary arterial hypertension (PH),” says Gabi.
The Treatment
There are so few cases of PH in South Africa that the doctors needed to research treatment and the family sought international assistance on the matter. PH is the narrowing of the arteries in the lungs, restricting blood flow to the lungs. This strains the heart, causes extreme shortness of breath and fatigue, and can result in congestive heart failure if not treated. Within days of starting grade 11, Jenna went from a carefree student to fighting for her life.
The condition has an annual incidence of one to two cases per million people in the USA and Europe, and is considered to be between two and four times more common in women than men. The onset of symptoms can occur at any age, but the average diagnosis seems to be around the age of 45. More often than not, diagnosis comes only at an advanced stage of the disease, and it is often mistaken for asthma.
At the time Jenna was diagnosed, she was already at an advanced stage and, within a short period, was on constant oxygen supply.
As there are so few treatments for this condition available in SA, Gabi started her own researching and reading. This was her daughter, after all, and she and Stuart wanted to know that they had done everything humanly possible for her.
“Not too long ago there were no treatments for PH. The prognosis was one to three years. With Jenna, it was different. There are many more drugs on the market to help prolong life expectancy. We already knew we were racing against the clock, as your chances are better the earlier you are diagnosed.”
However, the more research into treatment options Gabi did, the more she realised how little was available locally. “The majority of the treatments for PH are not available locally, as they are not registered here.” Gabi had found overseas expertise and, consulting with the doctors, she found out about a treatment that would greatly help Jenna.
“We imported one of her drugs with permission from the Medical Control Council,” she says, a process that took weeks of negotiation and follow-ups. The most successful treatment for PH is a multi-dimensional approach and includes anticoagulation drugs, oxygen therapy (Jenna had two oxygen machines, a portable one she took everywhere with her, and a bigger, stronger home model), phosphodiesterase inhibitors, endothelin receptor antagonists (the dual endothelin and receptor antagonist was imported specifically for Jenna), prostacyclin and its analogues, limited exercise and good nutrition.
Jenna’s Spirit of Determination:
Jenna used a mobile scooter to get herself (and her oxygen) around. Not only did she graduate from high school with flying colours, she also started university – overcoming all obstacles to continue on her journey to adulthood. Along with her mother, father and sister, she started an awareness campaign to help others like herself understand their condition and get the help they needed. They started fundraising campaigns and initiatives, and created the Jenna Lowe Trust (although a rare condition, there are more and more people being diagnosed with PH in South Africa due to better awareness).
As the family became accustomed to their new altered form of reality, the next setback hit them. Jenna’s condition was worsening, even on the imported medications. She was going to need a bilateral lung transplant. Once again Jenna, not looking at the desperation of her own situation, realised the dire need in South Africa for organ donors, and decided to step forward and put a face to the crisis.
“The sad truth is that, in this country, there are so many people like me who have either not been diagnosed or have no access to the right medicine and treatment, 80% of which is not available in the country. Plus, there are not nearly enough organ donors,” said Jenna at the time. With 4 300 people at any one time on the waiting list for urgent organdonations, and less than 0,2% of South Africans registered with the Organ Donor Foundation (ODF), Jenna and her family realised that her chances of getting the right lungs that matched her size, blood and tissue type were slim to none.
#GetMeTo21
The Cape Town agency Lowe and Partners SA came up with the campaign idea and Jenna was the perfect candidate to front it. And so the Get Me to 21 campaign was born. In the video, a visibly breathless (but always smiling) Jenna invites you to her 21st, and all you need to do to attend this special party is to sign up to be an organ donor. “The only way to get me to my own party is if I receive a pair of lungs in time,” she explains. “I want other people in the same position to have it better and to be able to live. Did you know that organ donation is free, that you can register online and it only takes a minute?” asks Jenna.
The #GetMeTo21 campaign launched in October last year and, within four weeks, more than 7 500 donors had signed up. As Jenna’s condition continued to worsen, she ramped up her fundraising and awareness efforts, supported tirelessly by her dedicated parents and sister. Jenna’s exhaustion was so great that she couldn’t even lift her computer onto her lap to type her blog, to update everyone on her journey.
Ironically, despite the fact that Cape Town is home to the world’s first heart transplant and is considered a world centre of excellence, bilateral lung transplants cannot be done there. Jenna’s condition meant that she needed to stay in her home town of Cape Town, as it was here that she could breathe easier, but she would have to go to Johannesburg for the operation.
Protocols were put in place; thick encyclopaedia-type binders of information on what to expect, the complications and life after transplant were read and reread; bags were ready and packed; a private plane (organised by the Ackerman family, a dedicated philanthropist for organ donation) was on standby. The only thing standing in Jenna’s way were the lungs themselves.
The Bilateral Lung Transplant
Then, in December, just as it seemed that Jenna would not be able to hold on much longer, the long-awaited phone call came. Gabi recalls the moment she was called, the elation she felt and the mild panic. For the first time in more than a year, Gabi wasn’t by Jenna’s side. After caring for her daughter constantly, and never being more than five minutes away, she and Jenna’s younger sister, Kristi, were taking a well-deserved few days’ break in Plettenberg Bay. And while Stuart and Lizzy (Jenna’s nurse and family friend) got Jenna prepped and ready for the emergency flight to Lanseria Airport, where a medivac helicopter was ready and waiting to take her to Milpark Hospital, Gabi and Kristi were waiting at George airport – their flight delayed.
When it comes to organ transplants, time is of the essence; every minute, every second counts. Yet a slight delay in the retrieval of the lungs meant that Gabi and Kristi made it to Jenna’s side within minutes of her being wheeled into surgery. The emotions, describes Gabi, were like a rollercoaster. They had waited so long for this miracle of life, but the next step of Jenna’s war against her own body was just starting.
A bilateral lung transplant is the most difficult of all transplants, taking a dedicated team of specialists, doctors and healthcare workers. The eight-hour operation itself was just the start, and it was during the procedure that her doctors discovered another issue: Jenna’s lungs were even more compromised than they had realised.
She pulled through the surgery, but her body needed time to recover; she needed to go onto dialysis and, yet again, her delicate life lay in the balance. For many weeks Jenna lay sedated, a multitude of machines keeping her alive, her new home a completely sterile high-care ward that ensured no germs of any sort could get into her compromised system.
Gabi and Stuart spent hours each day, pressed up against the glass, watching as their daughter clung stoically to life. Her last smile and words before being wheeled into surgery played over and over in Gabi’s head. “See you on the other side,” Gabi had said. And Jenna, ever-mischievous, had responded: “I’m not going to the other side; I plan on being right back here.”
On particularly bad days – whether sedated or not – Gabi would stand next to her daughter in ICU for hours, talking her through her life from pregnancy, right the way up to where they were. She described their favourite places – all those memories of Jenna’s short 20 years came tumbling out. She couldn’t hold Jenna; she couldn’t touch her. All she could do was stand and talk, and share a lifetime of love, dreams and hope. It worked. Jenna stabilised, and it seemed as if she were on the road to recovery. At the time of this original article, Jenna was breathing all on her own – a miraculous feat, considering she had been on oxygen for close on three years. Her new lungs seemed to be working; her body was starting to heal. She had managed to walk six steps, the first unaided walking in over a year. She had been out in the sunshine, breathing in huge, gulping breaths of crisp autumn air. And she had laughed with her mom, a belly laugh that didn’t leave her breathless and exhausted.
As Gabi sat beside her bed, Jenna had reached over and pulled her computer onto her lap. This simple feat, one that she hadn’t been able to do in over a year, was done with no thought.
And even while in hospital, there was no slowing Jenna or Gabi down. The pair were determined to continue to drive awareness for organ donation. Every day she and her family thanked her “angel-donor” and her donor’s family, whoever they are, wherever they may be. As she shared on her blog: “I can’t put the feeling into words. How do you thank someone for your life?”
Jenna Lowe’s Wish
Jenna’s own personal battle, though hard-fought, has ended, but her legacy remains and it is for us all to take this up in memory of her and continue the work she has started.Getting donors is now only half the battle – the second, equally important drive is to ensure that more transplant coordinators are trained up in South Africa, and that more centers of transplant excellence are opened.
You too can make a difference, simply by signing up to become an organ donor. Visit getmeto21.com, use the hashtag #getmeto21 and #save7.
Comments
One response to “#GetMeTo21 Jenna Lowe – Gone, but never forgotten”
May her soul Rest in Peace. And may God support and bless her family. Long live the spirit of Jenna long live!!!