For the past near decade, my health, and my life, have been in the hands of the Royal Brompton Hospital. Or more specifically, the wonderful doctors and specialist nurses, that make up their Pulmonary Hypertension team. Over the years, these knowledgeable and caring folk have been by my side, keeping me alive, and guiding me … More Meeting A New PH Team
I first noticed it in February; in the awful week of illness, following my lumbar puncture. Whilst battling sickness and headaches and strange sensations whenever I stood up, I also realised that my oxygen saturations were a little low. My body wasn’t getting enough O2. Since becoming an oxygen user in 2016, the amount of … More Strange Saturations
It all started three weeks ago. Phil and I were ‘playing’ in the bedroom -yes, this story is about sex 😉 – when Phil, quite literally, blew my mind. All of a sudden, my head felt like it was exploding. Boom. A wincing and jarring pain radiated from the back of my head, like spilt … More The Lumbar Puncture
I’m not a fan of Cardio-Pulmonary exercise tests (CPET). They’re exhausting. Professional athletes regularly enjoy them as part of their training regimes. Keen amateurs pay big bucks to have a go. And Phil would love love love to strap on the probes and push himself really hard. 😉 But not me- I’m not a fan. … More Some Long Overdue Tests
On the morning of the appointment, I still hadn’t made up my mind whether I was going to attend or not. I’d spent the evening yoyo-ing from one decision to the next. I should go, I shouldn’t, I should go, I shouldn’t. I debated it in my head whilst watching TV, I debated it in … More To Go Or Not To Go
When I lived in the world of the well, I rarely saw a doctor. I needed sat nav to find my local GP’s surgery, and I had no clue how many hospitals were dotted around Oxford. I didn’t know what a phlebotomist did, what echocardiograms were, and biology was just a school memory. I’d feel … More A Break From The Treadmill
I’m always a little nervous on the drive to hospital check-ups. My head starts psychologically prepping itself for bad news, and the ‘What if’s…’ start circling my thoughts. Even when I’m feeling in my best health, and am confident that my heart and lungs are doing well… there’s always a few butterflies as we drive … More Hospital Appointments And The Coronavirus
Before developing Pulmonary Hypertension, I’d only set foot inside a hospital a few times. Hospitals were not in my universe at all, not even in the far periphery. But after waking up seriously ill one morning, they swiftly become a central part of my world. And five years later, they still are. The reality of … More A Quick Check-Up
I’m no longer on the transplant list. It seems odd. For nineteen months, the wait for new lungs has been at the centre of my life. Not one day has passed when I haven’t been affected by being on the list, thought about it, or dreamed of the endless possibilities afterwards. So it seems strange, … More Taken Off The Transplant List
It was supposed to be an uneventful stay at the Brompton. A routine biannual checkup. I was expecting four days of tests and procedures and assessments. Four days of poking and puffing and prodding. Four days of Netflix films and tea machines and yummy three course meals. I wasn’t expecting a ride on an emotional … More Coping With Surprising Results
We Can Adjust The Sails 