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’ve been stable for the past two years. 🙂 I’ve been incredibly lucky, and am incredibly thankful. I’ve crammed in excitement, filled up my photo album and created many many happy memories. Despite the uncertainty when first diagnosed, amazingly I’ve carried on living and loving life with Pulmonary Hypertension and Pulmonary Venous Occlusive Disease. However … More Waiting And Guessing And Hoping
It’s alarming how quickly health can change. Despite living with Pulmonary Hypertension for five years now, it still shocks me that my body can dive down so suddenly and unexpectedly. Wellness the days before, a packed calendar ahead, feeling good… until abruptly I don’t. It’s happened again! My body is having a downer. I hate … More A Less Scary A&E
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 a combination of both of my parents. I inherited my Dad’s short height and dark colouring, and my Mum’s ‘Mackness’ nose and straight hair. My musical ability comes from my Dad, and my athletic build from my Mum. And I inherited from them both -together- the gene to develop Pulmonary Venous Occlusive Disease. 😛 … More My Faulty Gene
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?
I didn’t realise anything was wrong until I tried to lie down to sleep. Every time I approached horizontal, something squelched in my chest. I could feel the gunk and goo moving around as I tried desperately to cough it away. My breathing sounded odd, like something was blocking the windpipe. That night, I tossed … More The Chest Infection
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
We Can Adjust The Sails 