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CHAPTER 9

Breathlessness

In February 2011, four weeks after Natalie’s initial surgery and diagnosis, Stuart and I were both back at work while also running Natalie’s Circle of Love. Jenna and Kristi had started their school year.

It was around this time that Jenna first started to show signs of breathlessness.

At first it was subtle, barely noticeable. It was easy to assume this was anxiety related as we were all still in a state of shock over Natalie. When I questioned Jen about her breathing, she acknowledged that while Natalie was very much on her mind – “I am so worried about Natalie, Mom” – she didn’t feel it was anxiety related.

“This feels like a physical thing, Mom,” she confided, “a separate thing.”

Jen may have been a sensitive soul, but she was also pretty sensible, and the truth was that she was more likely to be stoic than dramatic. I kept an eye on it.

Jen’s breathlessness didn’t subside. We became more and more aware of how loudly she was breathing. Initially it seemed exercise induced. Walking down the passage fast or moving pots around the kitchen, slowly and insidiously the breathlessness became more regular. I started to notice it when she leaned over me to read something, or if the girls were working quietly at the dining room table, I could hear her from the kitchen counter. We started calling her Darth Vader to make her more aware of it, thinking that maybe this had become an anxiety-related habit. That memory makes me want to cry now.

Then she started coughing. Immediately I took her to our GP, Kathy. There was a bad cough doing the rounds at the time and Jen was medicated appropriately. A few weeks later we were back at the GP again. The cough had not subsided, and her breathing was still loud. This time Kathy did blood tests as well as a full examination plus a lung function test. She gave us more cough meds and an inhaler pump just in case. We carried on as normal.

Jen was not a complainer. Sometimes I wonder, had she been more vocal about how she was feeling, would she have been diagnosed earlier? I was worried and paid close attention, watching her carefully. It became second nature to listen for the nuances in her breathing. Following Kathy’s advice, we adjusted her diet to contain less wheat and dairy. These kinds of symptoms could indicate an allergy or food intolerance.

That first school term was hectic for both my girls as we tried to maintain their normal lives while dealing with getting Nattie and Shirl to Boston. But one of the things that was stressing Jen out most was a Grade 10 school event that was looming at the end of the first term – a five-day compulsory hike called “Step Out”. It takes place every Grade 10 year and is seen by the school and the girls as a sort of rite of passage. The hike was set to take place in the scenic mountains of Greyton, a small rural town three hours outside Cape Town, in just three weeks’ time.

“I’m really concerned, Mom,” Jenna told me. “The way I am feeling right now I’m worried I won’t be able to cope.” Although Jen looked like a gym bunny, she was in fact the furthest thing from sporty. “Mom,” she implored me, “I really need to get fit again, will you help me?” She had recently stopped swim-training due to her persistent cough, but now that it seemed to be getting better, we agreed we’d start walking together to get her hike ready.

On our very first walk together I got the fright of my life. Maybe, just maybe, something was seriously wrong. Could it be? Within a few blocks Jen was already breathless and when we turned the corner to walk up the first hill my alarm bells went off. She was really struggling. She had no breath. We turned back for home. “This is not anxiety or lack of fitness,” I said to Stuart that night as we got ready for bed. “I am nearly 50 and I coped better than Jen. Something’s not right, I can feel it in my gut.”

The next day I took Jen back to see Kathy. Thorough, caring and as attentive as always, she asked Jen a long list of questions, after which she did another lung function test, blood tests and a complete “check and service”. Again she found nothing. She was perplexed and concerned. Kathy knew Jen well and didn’t take this breathlessness lightly. She sent us, letter in hand, to a well-known local physician, Dr VC.

There were only two weeks left before the hike and we were becoming increasingly concerned. Would she cope? Should she do it? What was going on? Dr VC spent a long time with Jenna and he, too, asked many questions, fleshing out a full medical history, examining the problem from every angle and feeling out whether Jenna was the anxious type. From her choice of language, how she approached the answers, her demeanour and attitude, it soon became clear to him that she wasn’t; if anything, she was actually underplaying how she was feeling and a little embarrassed by her symptoms.

Dr VC did further tests: full bloods, lung function, a physical examination, chest X-ray, ECG and echo-cardiogram. He was thorough. Jen and I were both hurt when the echo-cardiogram technician implied that Jen was “air-hungry” and she should breathe into a brown paper bag. That wasn’t helpful.

Still we found nothing. There was no apparent or clear explanation. Jen was starting to feel as if she was going mad. We discussed Step Out. “Mom,” she said, “I must go, I can’t not do it. It will be okay, I will just push through. I’m not going to be ridiculed for not doing it. And Dr VC didn’t find anything.” Nevertheless, the physician was concerned. “There is one more test we could do,” he said, “but it’s very expensive and highly unlikely. It’s not a test I would normally do on a 16-year-old girl presenting this way.”

The test, the one we didn’t do, is called a VQ scan. This was the test that would put Jen into hospital six months later. It really is no one’s fault, but I wish we had done it that day. We would have discovered her condition earlier.

Dr VC gave Jenna a pump to ease the breathlessness, and a letter for the school to say she should stop and pull out of the hike if she needed to. I should never have let her go on that hike, but Jenna was determined. I think she feared that teachers and friends would judge her and think she was faking it. Peer pressure is a powerful and dangerous thing. She explained that lots of kids faked injury to get out of the hike. I will always deeply regret the decision we made to allow her to go. I should have trusted my gut, but I overrode it.

Of course, as soon as you are part of a team, halfway to the top of a mountain, there is no turning back. When Jenna got home, she looked absolutely wiped out and exhausted … and ill. She told us how day after day her lungs had literally felt on fire. She was left gasping for air, faint, weak and terrified. Letter or no letter, her group leader and group teacher did nothing about it; in fact, they subtly implied she was seeking attention. Not wanting to let anyone down, she pushed through. There was no cellphone coverage, only a walkie-talkie for emergencies, and the constant unspoken belief that this privileged bunch of girls had to toughen up. I had relied on Jenna and the school’s good sense to make the right choices on our behalf during the hike. They didn’t. I hadn’t taken into account the fact that Jenna was someone who never gave up. It was one of her distinguishing features. But why on earth not a single adult thought to stop her hiking is still beyond me.

With hindsight I am still angry with myself. But at the time we didn’t know about her illness. Nobody knew. We simply didn’t know. This is significant. It is significant because exactly this kind of thing happens to so many pulmonary hypertension patients. They can go for months and often years either being misdiagnosed or undiagnosed, which leads to further damage. It is a difficult disease to diagnose, a rare and “invisible” illness.

Knowing and experiencing this so dramatically, as Jen did on that hike, later became one of the driving forces behind her campaign for early diagnosis.