Sunday, 19 July 2015


Hello world.........or maybe just friends and family who know me and so therefore feel obliged to read it!

Introduction, I am Gemma, although my friends call me anything from Gem, Gem Gem, Gemba through to Eric! That's for another story! I'm 31, work in recruitment, did a music degree at Nottingham University, although I must admit I've barely touched the flute and piano since I graduated in 2006, love cooking, am a coeliac and live as everyone likes to call it in the Cheshire set. I'm not a WAG or from a rich family, just somehow managed to afford a nice 2 up 2 down period terrace.

You will have to bear with me, as this is my first ever attempt to do anything like this. I'm the least bit technical and one of my weaknesses is impatientness so this blog.....well I've already considered throwing the iPad through the window!! 

Ok so why have I decided to do it, you maybe asking. Well apparently according to the BBC it's one of the quickest ways to make money and as I live in the Cheshire set I need all the money I can!!

Seriously though my main aim if possible is to promote awareness about a rare lung and heart condition I have called Pulmonary Hypertension. For the technical version check out this website:

In my words, my blood vessels in my lungs don't open correctly therefore not allowing enough oxygenated blood to travel around the body, causing the right side of the heart to become enlarged and cause heart failure. It's a progressive disease with no cure and over time, unless a cure is found, my body will start to reject the 20 tablets of medication I take a day. Currently the only known cure is heart and lung transplant, something I never thought I would ever need. I have been told my life will be cut significantly short by this, by how much is anyone's guess. 

So that's the depressing bit!! 

So how was I diagnosed? I'm not one for short stories, my take is why say 3 words when 1000 is so much better?! Sorry for the bad humour too, I unfortunately get that from my dad the wannabe comic. So I will try and do something which is a bit alien for me and keep it concise and to the point. 

So I'll take you back to 2013. Me and my boyfriend Andy had decided we wanted to emigrate to Australia. I had been lucky enough to get work sponsorship and having travelled there in 2006/2007 it was always a place I wanted to go back too. So the summer of 2013 was busy, selling all our stuff, packing the bits up, shipping out stuff to Oz and saying our goodbyes to friends and family. We had our tickets booked for 9th October to leave. Unfortunately the 9th October came and went with no visa. The agency who were handling our visas were very confused, no reason as to what the delay was, they just kept saying just one of those things apparently. 

So in limbo we were. Staying at my parents house as Andy's house had been rented out. Not an ideal situation but in a way good timing as my sister was due to give birth at the beginning of November so at least one good thing for the delay was I could go and help her out with a new born.

November 19th we got the news our visa had been accepted. We were off to start a new life down under. Booked our flights we were off 30th December, aim to land in Melbourne on New Years Day to start our new life in 2014. Finally we could celebrate, so excited we were.

4am Saturday 23rd November, I venture off with Alex, my brother in law to the famous Billingsgate fish market. As my friends know me I'm not normally the best in the morning but I was looking forward to seeing this famous part of London. So that morning no different to any other we headed out in the cold and dark with a water and banana and drove the 40mins to the market. 

We arrive at the market, walking to the entrance, Alex a little ahead of me when all of a sudden it hit me. I remember the heat. This hotness spread over my body and my eye sight became really blurred. I remember what felt like me screaming, but I think was more of a whisper to Alex saying I don't feel right. Next thing everything went black. 

I woke on the wet, fishy floor of the market, really confused as to what had happened. Obviously delirious as I started doing angel shapes on the ground as though it was snowing and I was so confused as to why Alex was not joining in this game with me. It then dawned on me, why am I lying on a fish market floor when it's raining in my gorgeous new Reiss coat that my mum had bought me for Christmas????

I hear Alex say call an ambulance and me trying to get up saying don't be silly, I've just fainted I'll be fine, lets go in the market. I try to get up surrounded by people and my head is banging from where I hit my head on the way down. I try to brush it off but no one is having any of it. Next thing I'm in the ambulance. The lovely paramedic wires me up to what I learn is an ECG machine saying as long as the results come back we will let you go back to the market. Before I know it we are on our way to the Royal London hospital. 

Rushed into A&E I learnt that being on the pill meant I had a higher risk of developing blood clots. Something which I didn't know, and from speaking with a number of my friends they also didn't know. So for anyone reading this if you are on the pill make sure you read up about exactly what you are taking. I digress as the pill isn't the reason I have PH but felt it worthy to mention.

Over the weekend, I met with a number of consultants who all seem as baffled as each other. At one point I was told I would be having a pacemaker fitted, then they discussed open heart surgery. All quite a scary time when ok I felt a bit breathless but relatively felt fine, I felt like a fraud. I felt that the doctors were talking about someone else and I kept checking that they had the right notes as it just didn't feel real life. 

On the Monday I was transferred to St Barts as they had a specialist heart department. There I met a renowned consultant best in his field apparently and he basically said there's nothing wrong with you and I've no idea why you are here. Finally someone agreed with me, I wasn't going mental!!!! So happy thinking right get me out of hospital, let me go and see my beautiful niece and start getting on with our life in Australia. Alas though he wanted to do a few tests and then all being well he would let me go. So over the course of that week they prodded and poked, found out I'm allergic to the CT dye, ate the horrendous coeliac food they provided me and I carried on being the fraud that I so adamant thought I was. 

By the Thursday they had fulfilled all the tests and I was told the news. We can rule out you haven't had a heart attack, you don't have angina, you don't need to have a pacemaker fitted or have open heart surgery. Great news.

Then the words came out. We think you may have a rare disease called Pulmonary Hypertension. But we can't confirm as you will need to go to a specialist centre and that will take a while for you to get an appointment. Whatever you do though, don't Google it. So of course the first thing we did was Google and my whole world fell apart. According to the NHS website I had 2-3 years to live and that meant I was a lucky one!!! 

I was discharged. Having gone into the hospital the week before baffled as to what was going on, I was even more baffled coming out. Did I have 2 years to live? Was I meant to compile a bucket list? Was I mean to put all my ducks in a row? If I did have this illness would that mean I couldn't have children? Were they wrong, could they still not be sure what was going on and just pluck this illness out of the air so that it could be put in a box????? All these questions went on in my head for the next 6 weeks until my body during that time gave up and I ended up being blue lighted for the 2nd time, this time due to heart failure.

The date was New Years Day 2014. The day we were meant to be starting a new life in Australia. The day I was told I had officially Idiopathic Pulmonary Arterial Hypertension, stage 4. Ironic really! (Just for anyone who doesn't know there are no more stages than stage 4). We call it PH for short. I was definitely starting a new life but it was most definitely not the one I ever thought I would ever live, especially as a 30yr old. 

I can tell you there were tears. Even from the consultant who told me. There was lots of "why me?" Did I do something bad in a previous life? Was it karma? Or was I just the unlucky one? 

It's been an eventful 20 months. I've learnt a lot about me and realised how strong I am. I've been blessed to know I have a massive support network around me. I still have good and bad days. Today unfortunately is a bad day. Means I haven't been able to get out of bed. Andy has had to carry me to the loo, not the most glamorous of jobs for him as he's my boyfriend not meant to mean my carer. Everything is a task today, even breathing is a bit harder and heavier than normal. But I have to remind myself even on my bad days there are people out there who have PH who are worse than me and I know tomorrow will be a better day.

So on that note, I'm going to have a sleep. And one day I might actually get to Billingsgate fish market!!

Gem xx

This is me.

This was at Billingsgate Fish Market. Apparently I bashed my head on the handle of the pallet jack before falling on to the concrete floor.