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
Before I got my diagnosis of PVOD, I’d been immersed in the world of Pulmonary Hypertension for three years. Deeply immersed. I read blogs by fellow PHers, followed the latest research, and was a member of two global Facebook groups for patients. Each day I’d read and comment and learn from posts with questions about … More Strength In Numbers
My Pulmonary Hypertension consultant is on maternity leave. I’ve not seen her for nearly a year. She took over my care when I was diagnosed with PVOD (Pulmonary Venous Occlusive Disease), and so we’ve been through a lot in a few short years. She arranged for me to be rushed onto the transplant list when … More When The Consultant Is Away…
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
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?
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
We Can Adjust The Sails 