Last week I got a letter from Harefield Hospital. Since getting ill, I have collated a whole file of medical letters. Appointments, reminders for appointments, notes explaining what happened in the appointments, follow ups from points raised in the appointment. Having three hospitals wanting to see me regularly, I’ve now filled a large lever arch … More A Letter
June has been a mad month. I’ve been frantically trying to juggle the balls of life. With the slightest hint of summer rays and improved health, I’ve been filling my diary with activities and making memories. However the lovely NHS has also been filling my diary with weekly hospital visits and doctors appointments. For the … More An Auto-Immune Problem
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?
Steroids have a bad reputation. They have gained fame for being a dichotomy in the world of medicines- a wonder drug responsible for performing great medical miracles, yet a fiendish drug responsible for sending the rest of the body haywire! Having learnt about the many negative side-effects, nowadays doctors try and reduce the amount of … More The Problem With Steroids
It’s a very strange feeling starting the transplant assessment journey. I feel like my life is in the hands of someone else. The final answer could be a yes and the potential to save my life, or the final answer could be a no and that’s it, the end. I’d deliberately not really thought about … More The Start of Transplant Assessment
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!
This week marked the third anniversary of my initial dramatic collapse, which turned out to be Pulmonary Arterial Hypertension (PAH). In a strange coincidence, this week will now also be the date when I found out the name of a second lung condition I am also suffering from. At least it makes anniversaries easy to … More A Second Diagnosis
What a difference a week makes. This time last week, I was feeling breathless, sick and weak, everything was taking me so much time to do and my activity level was slowly dwindling back to zero. My transplant referral had knocked me down emotionally, and together they were threatening to steal my hope and positivity. … More Getting Oxygen
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 