When I was first diagnosed with Pulmonary Hypertension, back in 2013, I was really ill. After a month of lying in a hospital bed, overwhelmed with weakness, incapacitated with fatigue, and breathless with movement; I was like a living corpse. Phil would spend every day on the ward, by my side, emotionally supporting and physically supporting me. He did everything. Washing me, dressing me, brushing my hair. Lifting up my arms, propping me up when I moved, shaving my legs. Charging my phone, pushing me around, passing me anything I needed. I struggled to move my limbs, and suffered horrid exhaustion afterwards if I did. Consequently, I couldn’t walk -one solitary and wobbly step from bed to chair, or wheelchair to toilet- was about my limit. But worst of all, sometimes I was too frail and poorly, to move a single muscle, or even utter a single word. So I would just lie there. Still. Silent. Terrified. Locked in my own head. It was by far the scariest and hardest time of my life.
At the time I was going through test after test after test to work out what was wrong with me. Although I desperately wanted a diagnosis and help, I hated doing them. I was so ill, I only had a couple of energy coins to use each day, which were being used up (plus more) being wheeled around the hospital, doing their investigations. I was constantly in the red. Phil never left my side; accompanying me everywhere and working out ways to make it less energy zapping. Making them give me chairs, ensuring they only did things once, and wheeling me to the exact spot I needed to go. I remember being pushed to one test, where I was going to inhale radioactive gas, and my wheelchair wouldn’t fit into the testing room. Phil clearly told them that no, I couldn’t walk the two metres to the test, they would have to work out a way to wheel me in there.
So when they said one of the final assessments was the ‘Six Minute Walk Test’, I was terrified. As simple as its title, it involves walking up and down a 20m corridor, for six minutes; whilst distance and oxygen saturations are recorded. I remember Phil warning the doctor that six minutes was too much; and I’d likely not even manage a couple of metres. I remember him boosting me, psyching me up, encouraging petrified little me, that I could do it. And I remember how long those six minutes felt. Each step was a monumental effort: concentrating on, and using all my strength and breath to lift each leg, and repeat repeat repeat. It was exhausting, it was energy destroying, it was breath stealing. But despite feeling so incredibly ill whilst doing it, I gave it my absolute all. After six minutes I’d walked 23 metres. 23 hard long metres! Statistically this was a monumental fail. Scoring below 330m indicates a low survival rate. A poor prognosis. But to me and Phil this was amazing. Fantastic. A wondrous achievement. I’d walked further than any of us could have imagined or hoped for. Although I spent the rest of the day, unable to move a lone muscle, or say one word… I was full of pride and happiness.
Over the past eight years, I’ve continued to do the six minute walk test at every hospital visit. Initially, as the medicines took affect, and my body strengthened, the distance walked improved each time. First 75 metres, then 150m, then 240m, then 320, then 360, then 400. Then, during my PVOD decline in 2016, it plummeted back down to 180m, until my miracle immune-suppressants, started saving me. For the past four years, I’ve been consistently scoring in the 400s each time. My personal best, my PB, was 460m. 🙂
And last week, I did the test once again. Unable to do it in hospital, as I can’t walk without a mask, Phil measured a 20 metre section of private road in our village. I felt super strong, and so, cheered on by the sun, and my dogs… I managed a new personal best… 527 metres. 527 metres! Wahooooo! Unbelievable! 😀 The next day, as I chatted to my consultant at my Oxford hospital appointment, his eyes widened as I told him what I’d achieved. We looked at my latest echo-cardiogram, which showed a completely normal heart, and we reminisced about what my heart looked like a few years back when it was in failure. I’m lucky. So incredibly lucky. With my diagnosis of PVOD, I shouldn’t be surviving, let alone improving. I’m the healthiest I’ve ever been, since getting ill. I have more energy coins, more strength and I can do more activity. 🙂 But why is still a mystery. Recent French research suggest some PVOD patients grow extra capillaries that help keep the blood pressure down in the lungs. They suspect that is what my body has done. Although this would explain why my heart has recovered, it doesn’t explain why my oxygen saturations are higher, or why my lungs are functioning better. My consultant has started a few other PVOD patients on immune suppressants, with some success. So my gamble to take them, back in 2016, is hopefully helping others.
As I sit here writing this blog, remembering that first six minute walk test, remembering how incredibly poorly I was, remembering how scared I felt for my future; I feel a little tearful. I’d love to go back in time, and tell 2013 me that I would be alright, everything would work out well. Over the past eight years, amazingly, wonderfully, thankfully, I’ve gone from 23 metres to 527 metres. A fabulous new PB. I’m forever thankful to the wonderful NHS for saving my life, and making me strong enough to walk again 🙂
We Can Adjust The Sails 