Aortic Stenosis – What?! How?! Why?!

I was around nine years old when I first realised my heart was different, It started off with having a number of tests, an Echocardiogram, ECG, SATS test Chest X-Rays and finally the worst one, an MRI! For a little person, walking into a room and seeing this huge machine that I had to lye underneath, while also being strapped down, made my heart jump at a thousand beats… the MRI starts and the noise is haunting still now and I’m 29! –  The other tests weren’t as scary, I didn’t understand why they were doing them but they weren’t as huge; all I can remember is having to lye on a cold theatre bed, with my mum sat beside me while a doctor started sticking pads onto my chest and then connecting tubes up to the pads – as I got older I realised this was to check for an irregular heart beat, what came of it was a heart murmur.

As I was growing up as a child I had a lot to deal with medically, physically and mentally so having symptoms such as shortness of breath, becoming tired quickly, feeling dizzy and faint was a normal day to day feeling. It was decided by the doctors at the Children’s Hospital Birmingham that I was born with a heart murmur but it was nothing that would need to be treated, I would grow out of it.

From that moment, growing up there was no mention of issues with my heart – I sometimes think this is because there was so much other stuff going on it was ignored?

Growing up I was a bit of a tom boy, I remember one christmas my mum putting me in a pink dress, I screamed for it to come off the whole day – I was happy in my trainers and tracksuits. I loved sports, watching and mainly playing them. I became a massive fan of football and my grandad getting me to support Manchester United (This didn’t go down well with my dad being an Aston Villa Supporter) He got over it…

I remember being in hospital and myself and mum got speaking to another lady who’s son had a similar operation as me, after speaking with her and getting to know her I found out that her grandad was a part of Coventry city football club, from that moment I became very lucky and so happy that I had met this lady and her son.

She told me that her grandad could get me FREE tickets for whenever MAN UTD played Coventry at Coventry’s ground, the only small problem was having to sit in the Coventry end but that didn’t bother me, it made me so happy that I was able to and watch MAN UTD.

Of course with my family supporting Aston Villa, my gramps always came with me – it was an amazing experience and something I’ll never forget – I remember the last time we saw a game there, the crowd were going wild and my gramps thought it would be a good idea for us to leave early to beat the crowds and fights ( UTD were losing 2-0, so we was happy to leave )

We left the ground and suddenly we heard huge screams and shouts, it happened again… We didn’t realise until we arrived home that UTD had scored two goals and the game ended up a draw.

From the moment I started watching football live I knew I wanted to play myself, aiming to play for Manchester UTD ladies and hopefully one day England ladies. I remember being eight or nine, me and my brother always played football up the wall next to our local shop. Every day after school we would play (Until we got told to go and play somewhere else…)

I remember one day, a lady with ginger hair walked passed me and started to stare, I didn’t know why and just continued to play. She then got in her car and still continued to watch me… It couldn’t have been more than 30 minutes she got out of her car and came up to me and started introducing herself, she was the coach for Birmingham city ladies football team.

She started telling me how good she thought I was at playing football and have I considered playing for a team? She wrote down her name and phone number and asked me to get my parents to call her to discuss this – My dreams had come true, I had been scouted for a team,  I remember having this huge smile on my face and thinking this is too good to be true. I said “Thank you” and immediately ran home to my parents to tell them.

At first, my parents were reluctant to call her – for several reasons, mainly due to my health. After continually going on at them, they called and I started Sunday training immediately, it was amazing.

I then found out there was a local ladies Saturday’s league. I went for a training day and was asked to become part of their team also – I was on cloud nine. Not only was I playing my dream but also making some great friends along the way.

I have to say, the only thing that got in my way was having my Mitrofanoff – None of the other girls knew about this, that was my choice, I was extremely embarrassed having this and I didn’t want the other girls thinking I was a freak. When I think of it now I feel embarrassed for myself because you never know how people are going to react when you tell them something like this and not all is bad.

Before playing a game I would have to ensure I went to the loo, because the football pitches were so far away from the toilets going to the loo at half time wasn’t an option.

I remember many times, needing the loo, having pains in my stomach because my bladder was full but being extremely stubborn and making myself hold it in until the game was finished.

I managed to play football until I was almost 16 years old, when I was running around I found myself getting pains in the back of my calves, to the point it would stop me, I’d have to have a break and then carry on. Unfortunately it go to a point where my legs were going numb from the pain, my hips were seizing up and I was getting breathless. At that point I didn’t think anything serious of it, just that maybe I shouldn’t be playing football any more, I’m too old I thought? – At 16….

Having to quit football was heartbreaking but my legs and hips were too painful when running around. The pains became worse over time and again I put this down to being unfit and not training.

After this, growing up and trying to be a “normal” child, not only did I have the rest of my medical issues to deal with I was now starting to have pain in my legs wherever I walked? Especially going up hills… I didn’t understand this and why it was happening to me but again because there was so much other stuff going on with me, it was never picked up and looked into.

At 16 I decided to go to college to study Art & Graphics at Walsall, this involved me living with my grandparents for 3 years, although my Gramps used to always joke he thought it was only mean’t to be for 3 months… I loved living with them, they helped shape me into the person I am now.

Being only 16 to get to college would involve getting a bus, the bus to college was at the bottom of the hill so my walk home from the bus involved 3 hills to get to my grandparents house.

I remember sometimes crying with the pain in the legs, having to stop every 5 minutes because of the pain, numbness and breathlessness. It was a horrible experience, especially being around your friends, walking and having to stop because of the pain, numbness and breathlessness it was so embarrassing, but I just got on with it and again it wasn’t looked at.

This was something I never really moaned about to other people because I just put this down to being unfit, but no matter how much more exercise I did, it would get worse not better. Little did I know my body was getting weaker, not stronger.

In 2012 I was taken into the QE Birmingham hospital with a bad UTI, this is nothing new, growing up I was always in and out of the children’s with UTI’s and always having the same ultrasounds’ and X-Rays etc…

After being in hospital for a few days the doctors was noticing that I wasn’t making any improvements, they decided to send me for an ultrasound to check on my kidneys and bladder – shortly after a doctor came and sat with me and told me I had a narrowing of the aorta (Aortic Stenosis) – my first word was “WHAT?!”

What is Aortic Stenosis?

The Aorta is the main Artery from the heart the feeds the oxygenated blood to the rest of the body. A narrowing of the Aorta restricts the blood flow causing the heart to work harder and the rest of the body to suffer from a restricted supply of blood.

Heart and the Aorta
Heart and the Aorta

So, the doctors were asking me if I had any symptoms related to the stenosis, I explained that I would feel dizzy, had shortness of breath, became tired easily and have problems when exercising, I.E. – pains in my legs when walking.

It turns out that the pains in my legs were related to the stenosis, after more tests it showed that I was only getting 25% of the blood going down to my legs, so this was the cause of the pain and swelling I would get when exercising!

I went through so many emotions after being diagnosed with this, mainly because I had been suffering with these symptoms for over 10 years and after all the operations, scans etc this was never picked up and no one at that time could answer me WHY?!

So the doctors first thought of trying to solve this was for me to have an Angioplasty    This involved me be awake while they did the procedure, the doctors would numb my groin with anaesthetic and then push a rod which enabled them to put a stent in place which would of held my aorta open. This had to be by now one of the most horrific experiences I have gone through, not only being awake while they attempt to do this but then to find out afterwards that the operation failed and them messing around with my aorta had actually made things worse.

The next step was for them to replace part of my aorta with a skin graft from a pig and cut out the diseased part of the aorta and replace with the patch… The operation was a success, my recovery again was fast in the sense of getting out of hospital, I was home within a week which I was extremely chuffed about 🙂 So after the operation I was left with a very tidy scar…Scar 1


I am proud of my scars – They are the roadmap of my life, where I have been and where I am going…

My name is Rachel, I am 29 years old and writing my first blog,

So why have I started to do this?

I want this blog to encourage everyone to have a better understanding of what daily living is like for a person, like me, living with chronic illnesses – We all have a story, I’d love to hear yours…?

I want to connect with people who deeply desire to help not only themselves but others understand that just because you look “normal” doesn’t mean you don’t have a disability.

There is a phrase many of us will be familiar with and can relate to, when people say “To look at you, you wouldn’t think there was anything wrong” – Again, this can be down to just a lack of understanding of what that person is going through or just plane ignorance, so together with us all networking I want us to spread the word that you don’t have to be in a wheelchair to have a disability or be ill and most importantly that because your ill we should miss out on life.

As a young woman living with multiple chronic diseases,  growing up I soon realised that I didn’t have a “normal” life and have been through some incredible life changing experiences, having gone through so much as a child, teenage and now an adult I’ve finally decided that I want to share this and my aim is to create an online community, not only discussing my illness and what I go through on a daily basis but would love to hear your life stories and be the support network that I never had.

I hope this blog inspires you to never give up, shows that no matter how hard the day becomes, there is always light at the end of the tunnel.

I hope you enjoy the blogs I put up and I look forward to hearing from you 🙂