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
A fellow PH blogger (Gem) once noted that when she started writing a blog, things suddenly started getting “interesting”. I’m beginning to see what she means. I made the decision to start a blog in December, and things have not gone that smoothly since! I was expecting to be writing this next blog from the … More A Muddle
After a difficult few months, I was booked in for a procedure to get a definitive answer about whether my PH was progressing, or if this was just a normal blip. I’d not normally be so keen to have a Right Heart Catheter (RHC)-fiddling with wires inside your heart whilst you’re awake, is not the … More A Right Heart Catheter
After being so ill when first diagnosed with Pulmonary Hypertension, my biggest fear in the world is being that poorly again. Unfortunately PH is a progressive disease, so at some point it is inevitable that my PH will worsen. The hope, therefore, is to spot this change before it damages my heart too much and … More Is my PH getting worse, or is this a normal blip ?
Leaving the Brompton after a month in hospital was quite scary. I had become quite reliant upon the nurses and the security of daily doctor’s rounds, and so was therefore terrified and concerned about whether I would be safe at home. To be honest, I would have happily stayed there longer! However walking through my … More My PH Journey So Far – The Last 2 Years
I was a healthy child, a healthy teenager and a healthy early adult. I rarely had to visit the doctor and was never allowed a day off from school for being ill! Up until recently, I’d only had two hospital visits in my entire life- the most dramatic being a painful sprained ankle whilst jumping … More My PH Journey So Far – Getting the Diagnosis