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
Last week my hospital consultant told me she was wondering if I was now too stable to be on the transplant list. She tentatively suggested I be taken off it for the time being. Suspended for a while. Put on pause until I start to deteriorate again. I was shocked. Gobsmacked. Maybe I should have … More Am I Going To Be Suspended From The Transplant List?
In the world of illness, it takes a long time to get answers. Ideally, if someone becomes poorly, they should be able to see their doctor the next day… tests should be done then and there… and doctors should meet together urgently to discuss the patient’s case. But in reality, these processes take much longer to … More Searching For An Answer
At the start of March, I had four weeks of unexplained illness. For a month, I lay fatigued on the sofa, my oxygen saturations dropping every time I moved. My PH consultant had seen me during this time, so was keen for me to be admitted to the Brompton for more detailed tests, to gauge … More A Quick Hospital Stay
I’ve had a great start to 2017. Throughout January and February, my health has been stable, so I’ve taken advantage of my plateaued condition by filling the calendar. For me, it’s important to make memories, see people, live life whilst I still can. A catch up, a night away, a day trip, a dinner party. Something … More A Month of Illness
I’d got it in to my head that I was deteriorating. I was conscious that this time last year my health had shot rapidly downwards, so when I started to feel ‘different’, I assumed that history was about to repeat itself. For two months, from the end of October to the start of December, I … More Nervous, Nervous, Nervous
