UNTIL THE END
Ihave met many inspiring people in my life, but very rarely has anyone touched me as deeply as Jenna Lowe did. In November, I was privileged to spend an afternoon with her. She agreed to talk to me as part of a series of interviews for a book about young people who were born in 1994. Three years earlier, she had been diagnosed with pulmonary hypertension and urgently needed a double lung transplant.
Despite the fact that she was seriously ill, she began a campaign to convince others to become organ donors. Through her GetMeTo21 campaign, she had at that stage already convinced more than 8 000 people to become donors. During our conversation, Jenna was very weak. She was confined to her bed and needed oxygen. Doctors estimated that she needed the transplant within five months. But she was determined to tell her story and get her message out.
What follows is a shortened version of Jenna’s story in her own words.
“I was born in Cape Town and, since I was three years old, we have lived in this house. As a child I was a real girly girl – obsessed with pink. From grades 1 to 12, I was at Herschel Girls’ School in Claremont, Cape Town. I loved it there! But I was a little bit of a nerd. I was obsessed with reading and getting As for everything.
“However, in Grade 9, at the age of 16, I started feeling breathless when exercising. At first, I thought I was just really unfit, so I upped my exercise regime. But then it got worse and we got to the point where we realised something was wrong. My family started to call me Darth Vader, because I started to breathe just a little too loudly. All the tests and X-rays showed no abnormalities.
“The turning point came when I went on a 10-day hike with my school in the mountains around McGregor. The doctors told me later that I was pretty close to a heart attack all the time, because I was pushing myself really hard. And it did irreparable damage.
“After the hike, and still in search of answers, we went to a different doctor. He diagnosed asthma. This would later prove to have further worsened my condition.
“After the asthma diagnosis, and now in Grade 10, I went to Australia as part of an exchange programme. Although it was an incredible experience, it was also very difficult. We walked everywhere, and at the end of the time there, I was really not doing well.
“So in January 2012, we went back to the original doctor. He ordered a ventilation/perfusion lung scan. It would change everything. The scan ruled out asthma and showed numerous blood clots all over my lungs. When the doctor said that I had to go to hospital, I said: ‘No, I have to go to school first. I will go on Saturday.’
“The doctor just looked at me and said: ‘I am giving you 20 minutes to get some underwear at home and then you have to be in hospital. I am meeting you there.’
“It would be the start of months of tests and different hospital stays. In April 2012, a diagnosis was finally made. I had pulmonary hypertension, or PH. At first, I was relieved to finally have a diagnosis. But then I realised that my diagnosis did not come with a cure, and I was really irritated. It’s not easy to hear doctors say: ‘You have this disease; it comes out of nowhere, and we also can’t cure it.’
“That was really frustrating. I remember thinking that I have always been so careful. I always ate healthily. I never drank and I always put on sunscreen – even on my friends. I was obsessed with longevity ... and then this?
“Over the past three years, my condition deteriorated, so now my only hope is a double lung transplant.
“But I don’t have any real regrets. Well, very few. In retrospect, I wish that I had complained a bit earlier when I started to feel unwell. And maybe I regret a little that I was always so future oriented. Unlike other kids, I did not live in the moment.
“But I don’t want to be a victim. Every time I am sad or feel sorry for myself, I ask myself: ‘Why are you playing the victim?’ Of course, there are difficult days. But there is a difference between being realistic about what is going on and being selfindulgent. There are people who are having a far worse time than me.
“I do think about death – more practically and logistically. I think about the reality that it might happen and that helps me to determine the choices I make for now. For example, if I am going to die soon, what do I want to do with my time now? I also think about how it is going to work … especially for my parents. I catch myself thinking about how sad they will be and how I will make it easier for them. Then, of course, I have to remind myself that I am not going to be there. That is weird ... so I don’t try to think about it too much.
“After I got on the transplant list, I felt I could have dreams again. They might not sound big to other people, but they are big for me. I dream about being able to leave my house and feel the sun and air on my face again. I dream about taking a shower and being able to wash my hair. And yes! If I can get to my 21st birthday, that would be really cool.”
Fifteen days after our interview, Jenna received the double lung transplant. In February, she wrote on her blog: “I am in the transplant ward, typing to the sounds of a Johannesburg thunderstorm … Recovery is long and slow, and it’s been really hard … But I did pull through and now I can smell the rain outside my window and see daylight again.”
After bravely fighting numerous complications, Jenna lost her fight for life on Monday night. She would have been 21 on October 28.
The complete interview with Jenna is available in 21 at 21: The Coming of Age of a Nation by Verwoerd
and Sonwabiso Ngcowa. Also visit getmeto21.com
TENACIOUS Jenna Lowe, diagnosed with pulmonary hypertension, convinced more than 8 000 people to become organ donors. She underwent a double lung transplant last year but passed away after battling numerous complications