We Can Adjust The Sails

Nine years ago -this week- I collapsed whilst getting ready for work. Overnight my life changed. Completely and totally. Previously a busy and active primary school teacher, now I struggled to breathe and move and live. And no one knew why. For six difficult and exhausting months, I battled to subsist with my unfamiliar disabilities and frailties and my -very changed- new normal. For six distressing and sorrowful months, I mourned my old life, whilst battling to stay positive for my new one. For six frightening and frustrating months, I underwent test after test, and bounced from doctor to doctor, in search of an explanation. Eventually, I was diagnosed with Pulmonary Hypertension. With a prevalence of 1 in a million; it was rare. With 50% of patients dying within 3-5 years, it was life-limiting.

Six years ago -this week- I was in the Brompton hospital. A troop of doctors and nurses pulled the curtain around my bed, and changed my life once again. They could finally explain why I was still so disabled despite being on specialist PH treatment. They could finally explain why I was rapidly and unexpectedly deteriorating, despite upping my meds. They could finally explain why I was fighting for breath. I was diagnosed with Pulmonary Venous Occlusive Disease. With a prevalence of 1 in 10-100 million; it was a rare rare rare form of an already rare condition. And with 90% of patients dying within a year; it was terminal.

But, amazingly, wonderfully, thankfully, 3288 days after first collapsing, 2192 days after my terminal diagnosis, I am still here. Despite the awful odds against me, I am still alive. Still happy and active and loving life. Thanks to some miracle medicines, an aura of positivity, and a lot of luck, I have surpassed those terrifying prognoses, lived past my expiration date, stayed hidden from the Grim reaper. And furthermore, my marvellous lungs have not just found a way to live alongside their difficulties, but miraculously, have improved. Unexpectedly. Unexplainably. 🙂 The Sarah that needed help to shower and dress and brush her hair. The Sarah that needed to be cooked for, accompanied everywhere, carried up the stairs. The Sarah that was too breathless to talk, too overstimulated to be around people, too fatigued by everything. Absolutely everything. Well, today, that same Sarah hung the washing on the line, sowed some seeds, put away the shopping. Scootered around the fields, drove the car, cooked dinner for all. Played with Kep, chatted on the phone, wrote this blog. All in one day. My current life is a million miles from those early years. And with my own lungs too. 🙂 I am so thankful. So so incredibly thankful. Life is so much sweeter, when you weren’t expecting to be here to see it.

Happy diagnosis anniversary wonderful lungs. 🙂

(Edit: And three days after writing this- if there weren’t enough medical anniversaries in one week, I’ve just been diagnosed with Covid. Keep phighting lungs!)