Since I was little I’ve always had active holidays. As children we would always go away to places dotted around the UK and so our vacations were filled with day trips to theme parks, castles and adventures. If we went to the beach, we wouldn’t be creatures of the sun, instead we would be out … More A ‘Relaxing’ Easter Holiday Away
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
My Mum turned 60 last week. We’ve been awaiting this event for months now, as my Mum has been brimming with excitement about it since Christmas. Having never had one before, she was planning a huge party with nearly 200 people in attendance (200 people- she has far more friends than me!) For the last … More My Mum’s Party
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
Yesterday they mentioned the T word to me for the very first time. The T word- too scary to be called by it’s full name yet. The T word- a small word but signalling the scariest, biggest operation possible. The T word- only ten letters long, but the start of the most frightening battle for … More The T Word
When I was little I went to swimming lessons every week for many years. I loved swimming lengths up and down, but my favourite part was when we got to do exciting things like diving for the brick at the bottom of the pool, or playing water polo, or even treading water whilst watching the … More Treading Water
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 ?
We Can Adjust The Sails 