A Mini Miracle

Back in March 2013, I was feeling rundown. Walking made me breathless, and life felt exhausting. I’d reported similar symptoms to my GP in the years prior; but was always told I was anxious or unfit or anxious or unfit. Desperate to improve, I started walking a loop on the outskirts of our village, that passed our local cemetery. We nicknamed it ‘Church Lane’. Every evening, weary after a day of teaching five year olds, I’d trudge this loop. Trying to get fitter. Trying. To. Get. Well. Within weeks I’d collapsed, and was diagnosed with Pulmonary Hypertension. Turns out it wasn’t worry or fitness, but rather elevated pulmonary pressures and heart failure. The Church Lane loop was the last hike I did.

Over the last eight years of illness, I’ve still regularly ventured along it. Albeit in a wheelchair or mobility scooter. When we adopted Lottie the beagle, a year after my diagnosis, the route became even more important. Unable to access the countryside on my small scooter, ‘Church Lane’ was one of only two dog walks from my house that I could join in. So we did it a lot. Most days. Greeting the other village dogs, and watching the scenery change over the seasons and years. But how I longed to walk it with Lottie. No longer driving with one hand. No longer tangling her lead in my wheels. No longer accidentally clipping her heels. Instead strolling together. Sniffing and watching and exploring. I yearned for that normality. I didn’t want to always be her disabled Mum.

So when I was accepted for transplant, and allowed to dream of a life where I could run and skip and jump… I wrote a bucket list for after. Activities and adventures for my new lungs. And number one… was to walk Lottie around Church Lane. 🙂 Later, when I stabilized and improved and was controversially paused on the active transplant waiting list; I actually felt a little strange inside. Although extra time with my own lungs was wonderful; it also meant the dreams and goals were put on hold. Church Lane was indefinitely postponed. And sadly, with my old-lady-dog nearing her end, I realised Lottie would likely not be there to walk it with me. :-/

But… amazingly, wonderfully, thankfully, last week a mini miracle happened. Lottie and I walked Church Lane together. All 2100 metres or 1.3 miles. 🙂

Ever since collapsing with Pulmonary Hypertension, walking has been my nemesis (read the blog). Despite trying and trying and trying and trying, I’ve never since been able to walk further than a few hundred metres. On top of my PH, my lungs are structurally damaged due to PVOD, so struggle to extract oxygen and remove carbon dioxide. They only work at 30%. Consequently, after ten, twenty, thirty seconds of strolling, my lungs cannot cope, forcing me to stop. It feels like my mouth is covered, my lungs are tiny, or I can’t take in air. Horrid. Even standing still for a few minutes, causes breathlessness. Furthermore, the awful after-effects of pushing my body this way, leave me ill. :-/ Last year, to raise funds for the PHA, I forced myself to walk further than was safe. 770m daily for a week. Consequently my body went into crisis. Palpitations and breathlessness and extreme fatigue and nausea. I spent the whole week on the sofa. Unable to move, except for my daily challenge. I have never walked that far since.

Therefore I thought 770m was my upper limit. My this-is-too-much point. My maximum endurance. I couldn’t walk further than that. And I thought exercising on consecutive days was harmful to my lungs. Thus, when I signed up for another -month long- virtual walking event (Race at Your Pace), it was with excitement but also trepidation. Especially as I was still recovering from a chest infection. I wanted to challenge myself… but safely. I wanted to push my body… but without harming it. I wanted to walk more… but not to the detriment of my normal routine. So nervously, I signed up for five miles. 350m, every few days, throughout November.

And unbelievably, something has changed. This year, walking felt easier. My lungs didn’t struggle with every step. And if I sauntered slowly, they could keep up for a short while. 🙂 So as the month progressed, I pushed myself more and more. My 350m distance was usurped to 500m, 700m, 800m, 1km, 1 mile, and finally Church Lane. My ten minutes on my feet increased to sometimes fifty. My ‘a few times a week’ changed to almost every day, and occasionally twice a day. I even got quicker! 🙂 And my body coped. Some afternoon naps and achy legs and early nights and a twingy glute, but no warning signs or scary symptoms. And no month on the sofa. I mostly carried on with life as normal. 🙂 But best of all, most astonishingly and unexpectedly… I managed 17 miles in November! Wahoo! Proud, proud, proud. 🙂

And wow, it feels amazing. Absolutely incredible. A mini miracle. 🙂 After eight years of hoping and praying, after eight years of trying and pushing, after eight years of wheels… it feels awesome to use my own two feet. Liberating and freeing. I can suddenly walk to the village shop, or follow the inaccessible (stiles!) footpaths, or kick Autumn leaves. I can suddenly see over hedges, or squeeze down the narrow passages, or be in silence, without the noisy scooter engine. With two free hands, I can take both dogs out together… alone! I absolutely adore it. My daily stroll is my favourite favourite favourite time of day. For those precious minutes, I feel like a new me. Independent, strong, confident. Invincible 🙂

Don’t get me wrong, I still cannot stroll everywhere like normal folk. Each of these walks is my exercise, my exertion, my once-a-day-only challenge. And Church Lane is my marathon; hopefully repeated again… though not for a while. 😉 But I’m ecstatic. I still need my scooter for daily life, but it’s absolutely wonderful to occasionally walk a little further on my own feet. 🙂

I’m kinda perplexed why. 🙂 Maybe my steroids are working their magic further? Maybe the hours and hours spent gardening and playing with a very active pup has helped? Maybe someone is watching over me? Maybe we’ll never know. My response to PVOD has always been unexpected and unexplained. It’s fun being a puzzle. 😀

As Lottie and I slowly strolled Church Lane together, my heart was bursting with joy, and my eyes were full of tears. I’ve ticked off the first adventure on my bucket list… and I haven’t yet had a transplant! 🙂


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