We Can Adjust The Sails

It was November 2006, and I was twenty-five. For the past few years, I’d been getting increasingly breathless whenever I exercised. Repeated doctor visits kept assuring me I was just unfit. I went to the gym, hiked, played badminton- I was even the Physical Education leader at my school. But, I trusted my GP. So that night I was at the swimming pool. Upping my exercise regime, trying to get fitter.

I started doing lengths, up and down the pool. Breast stroke. Slow and steady, slow and steady. The first few laps were alright, but then I started feeling breathless. Really breathless. Like at the end of a sprinting race- when you’re gasping and gulping. I remember looking at the clock, and being shocked -and ashamed- that I was struggling after less than five minutes. I remember berating myself- I wasn’t trying hard enough, I needed to push myself. I remember my determination to keep going. Hopeful that was the key to getting fitter. Desperate.

So despite the puffing and panting, and my lungs screaming at me to stop; I pushed myself to keep moving. Another stroke, another metre forward. Another stroke, another metre forward. A half stroke as I gulped and gasped. Suddenly, I realised that my inhalations and exhalations were no longer helping. I was still puffing and panting, but now it felt like no oxygen was going in. Like I was holding my breath… when I wasn’t. By now, that berating voice inside had turned into a panicked scream: breathe, breathe, breathe. But I was. I had been all along. I couldn’t understand what was happening- I grabbed the wall. For the next few minutes, slumped at the side of the pool, my lungs fought to get oxygen inside. Frantically, desperately, fiercely. My eyes were wide, my hands clenched, every molecule inside pleading for the oxygen to come, for respite to return. It was horrendous. One of the most traumatic moments of my life thus far. Afterwards, I drove home in tears. Traumatized. But also confident and certain that there was something wrong with me. The doctors were mistaken. From then onwards, I’d joke “one day this’ll kill me, and then you’ll realise I only had one lung”. Not one lung, Pulmonary Hypertension.

I didn’t get a PH diagnosis for another six years. But after that awful incident in the pool, I never pushed my lungs to their absolute limit again. Instead, I’d “control my breathing”; only walking or hiking at a speed that my body could competently oxygenate it. If it started to feel like I was holding my breath, when I wasn’t… I’d immediately slow or stop. However, occasionally I’d accidentally push myself far too much- like when I was unexpectedly called up in a school assembly, and pressured to compete in a skipping contest. A minute of my lungs screaming whilst children cheering me, their teacher, to beat the skipping visitor. But, most of the time I exercised within my means. I could still do everything, just more slowly. I got even slower at the years passed.

By the time I was thirty-three and diagnosed with PH, my body struggled to oxygenate itself with even the littlest activity. My lungs and heart were so poorly, that they’d be pushed to their limit every time I stood up quickly or walked across the room or looked at the stairs! Multiple times every day, my body would face a terrifying battle to get more O2. Anxiety and panic made it worse; so I’d bang rhythms with my teeth or count; anything to stop me thinking about what was happening. I hated it, but learnt to live with it. Thankfully, over time, the scary incidents lessened and lessened and then stopped, as the PH meds supported my body to absorb more O2. But sadly, they returned a few years later when I developed abnormalities in my respiratory venous system (PVOD) meaning my lungs could only absorb a quarter of the O2 they needed. Yep, just a quarter. Thank goodness for wonderful bottled oxygen. For these past six years, by breathing in four litres of lovely oxygen per minute, whenever I do activity, my oxygen levels remain ‘normal’ and my body is happy. 🙂

That was, until a few months ago. Suddenly, after six years of stability, my body once again, struggled to oxygenate itself. Sadly, four litres of O2 was no longer enough to help maintain normal blood oxygen levels when walking round the house, or traipsing up the stairs, or playing with the dog. When breathing in my usual O2 dose, instead of oxygen levels of 97% (95-100% is ‘normal’), they began dramatically skydiving to 80% or 70%. Dangerously low amounts. The ‘feeling of breath holding when breathing’ returned, as did the teeth drums to distract myself. At least they did for a while. Scared, I ignored it for weeks; before finally admitting to myself that I was struggling, that I needed more oxygen. I upped my dosage to 6 litres, and thankfully it worked. My body can cope again, is happy again. I can walk and climb stairs and beat Keppie at tug again. As long as I’m piped up to a little more of the lovely O2, I can continue living my best life.

Two months down the line, and I’m seemingly stable on this new dosage. As usual, there are no clear reasons or explanations. Hospital tests suggest nothing has changed inside. And strangely and conversely, I continue to be functionally more able than ever before. I am more independent, can achieve more daily, do previously out-of-reach activities. At times I feel half-way normal. But maybe that isn’t so strange. Maybe that’s the reason, the cause, the answer. Maybe my extra activity is why I need extra oxygen. Let’s hope so. Time will tell.

Life carries on. With a little extra oxygen. 🙂