UN­TIL THE END

CityPress - - Voices - Ver­wo­erd – Me­lanie

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

PHOTO: SCREEN­GRAB FROM YOUTUBE

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

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