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
I arrived at Harefield in a bright mood. The sun was shining, I’d spotted ten Red Kites en-route, and had met a friend for lunch beforehand. Moreover with my recent positive test results suggesting stability, I was confident I wouldn’t need to be reactivated on the transplant list just yet. But four hours later, I … More Bursting My Bubble
I wasn’t expecting it to be an interesting hospital appointment. Just a routine check-up at Harefield. A myriad of tests, chips for lunch, hours of filling time in the waiting room, before a “Hello, keep plodding along” from the team. Same as normal, nothing controversial; so I travelled down alone. When I last chatted to … More An Unexpected Loop on The Transplant Rollercoaster
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
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?
Before I was put on the lung transplant list, I didn’t really know anything about it. I had no reason to. I had a couple of Facebook friends who’d been through the process, but that was the extent of my knowledge. At the time of signing up, I hadn’t really thought in much detail about … More Is It Better To Know More?
I’m lucky. Since going on the transplant list, very little in my life has had to change. Whilst waiting on the list, some patients have to move house to live in the city of the transplant hospital… Or have to desperately fundraise the 100k needed to pay for the operation… Or have to stay hooked … More Staying Close to Harefield
I’ve been waiting for a year now. Thirteen months in fact. Thirteen -unbelievably quick, speeding by- months. Its been over a year since I took that terrifying call to hear if I’d been accepted on to the transplant list. It’s been over a year since I signed the forms agreeing to accept new lungs if … More One Year On The Transplant List
When I was first diagnosed with ‘Pulmonary Venous Occlusive Disease’, I asked my consultant how much time I had left. He screwed his mouth up, scrunched his forehead, and pulled a ‘bad news’ face. In that one reaction, I knew it would be distressing. And I also knew I wasn’t ready to hear that. So … More The Prognosis
I remember the first time I felt like my throat was closing up. One Friday night, back in 2005, Phil and I were sipping red wine and listening to some Damien Rice songs. Suddenly I felt strange. My throat had closed up. Literally in a second, my throat had sealed shut, and my next normal … More Throat Spasms -Will I Be Kicked Off The List?
We Can Adjust The Sails 