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
I last had a hospital appointment in June, three lovely long months ago. Since then I’ve been deliberately postponing them. I’ve received monthly letters from my Pulmonary Hypertension team inviting me along for a check up. I turned down June, I turned down July, I turned down August, I eventually agreed to go along in … More Time For A Check Up
I used to assume that anyone who needed a new organ would be placed on the organ transplant waiting list. However, since entering the world of ill heath, I’ve sadly learnt that there is no guarantee that anyone will be accepted. Through transplant groups on facebook, I’ve observed daily, distraught people from around the globe, … More Final Transplant Assessment
Driving down the M40 on the way to the Brompton hospital, I was adamant that I’d be returning without the steroids. Having suffered their side effects for the last two months, I had my fingers crossed that I’d be able to stop taking them now the trial period was over. However it didn’t quite work … More Have the Steroids helped?
I fear my chances of competing in the Olympics this year have just been squashed. I am now so pumped full of steroids, that I’m not going to pass any drug doping blood tests. And my slowly rounding “moon face” will probably also give it away! When Phil and I lived in Ethiopia, we were … More Pumped full of steroids!
Pulmonary Hypertension is a very rare condition, which unfortunately means that despite great advances in the last 20 years, there is still a lot that is unknown about the disease. Having spent a couple of days at the Royal Brompton Hospital this week, and having completed lots of tests for them, I am still not … More Tests at the Brompton
We Can Adjust The Sails 