Sorry for not being in touch sooner - I've had another small health nightmare, which you will find out more about as you read on! I orignially wrote this version of story for the amazing Lifeblood, but I thought it would fit in nicely here too! So here it is...
My Story
Having been born ten weeks early and weighing only 2lbs 2oz,
I’ve always considered myself lucky to be alive.
Growing up, I had no issues with my health – then suddenly
in late 2007, aged 22, I noticed a problem with my breathing. I went to the
doctors on several occasions, and was eventually diagnosed with asthma.
At that time, I was training to be a primary school teacher;
but whether or not it was because I was poorly but didn’t yet realise, in early
2008 I decided that I couldn’t cope with the demands of the course, and instead
left to concentrate my efforts on finding a full time job.
It wasn’t until March 2008, that I noticed my breathing was
getting progressively worse. One night I was trampolining with my friend, and
after jumping only a couple of times, I felt as though I was suffocating. I
told my friend that I was fine, and that I just needed to rest - but as I sat
beside the trampoline my chest felt as though it was about to explode, and I
was close to passing out. A few sips of water and a couple of minutes later, I
felt much better and was convinced into going on the trampoline, only for the
same thing to happen again. I lay on the trampoline, and jokingly asked my
friend to call an ambulance, although subconsciously I think I was actually
deadly serious. My friend commented on my lips looking blue, but I brushed it
off, saying that I was just cold. At the time I didn’t realise the severity of
what had just happened.
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| Taken a week before being diagnosed. |
Only a couple of days later, I got out of bed, and walked
downstairs and started gasping for air. It felt as though an elephant was
sitting on my chest, as I frantically searched for my asthma inhaler. The next
I knew, I was coming round from passing out and my breathing had settled down.
No one was home, and I had convinced myself that it was asthma that was causing
the symptoms. I decided to lie on the sofa for the rest of the day, feeling
sorry for myself but not at all worried by what had happened. Having had no
previous experience of asthma, I told myself that it was probably just
something that happens occasionally…
Over the weekend, my symptoms got increasingly severe. It
got to the point that I was having to be carried upstairs, as even walking up a
single step had me struggling for breath. Lifting my arm made me feel as though
my heart was about to pop out of my chest. I was eventually convinced into
going to see the out of hour’s doctor. The next I knew, I was on oxygen and an
ambulance had been called. The doctor said she thought I was suffering a
pulmonary embolism, but I had no idea what that meant. I burst into tears,
terrified by the prospect of my first stay in hospital. I had no idea just how
poorly I was.
Tests discovered that I had a massive pulmonary embolism in
the pulmonary artery, and multiple smaller clots in both lungs. My heart had enlarged
to five or six times the size it should have been, and was beating at 220 when
it was first checked in the ambulance. I spent the next week in the Coronary
Care Unit, on oxygen and attached to a heart monitor. Every time I tried to
move it would set the alarms on the heart monitor off, because even the
smallest movement caused my heart to beat over 200. Initially my parents were
told to prepare for the worst, so I know that I’m extremely lucky to still be
here!
I was put on warfarin, which I was told would be life long
because of the extent of my clotting. I was also told that it would take me a
very long time to recover, but that to me, meant a few weeks or perhaps a month
at the most.
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| My tattoo of the date I got diagnosed - a celebration of the 'new me'. |
Today, six years later, my body still hasn’t really
recovered. In 2011, I suffered a massive retroperitoneal haemorrhage in which I
lost six pints of blood. Initially the doctors thought that there was gynaecological
reason for the haemorrhage, but after investigation, the only thing that they’ve
been able to pin the bleed on is the fact that I was on warfarin. Please don’t
let this scare you though! I have been told on several occasions that it is a
very rare complication of warfarin, and that I was actually just very unlucky,
(or you could say very lucky as I survived!) As the doctors couldn’t find that
I had any predisposition to clotting, and they felt that my clots had been
caused by the contraceptive pill, they decided to take me off of warfarin
because of the risk of bleeding again.
Since the PE, I’ve had ongoing issues with inappropriate
tachycardia, (heart rate over 100bpm). Despite the fact that the clots have dispersed
apart from some residual scarring in my lungs, my heart continues to work
really hard. My resting pulse can often be over 130bpm, and my heart rate rises
inappropriately when I stand and walk. This makes life extremely difficult, as
even the smallest tasks feel like a huge mountain to me. I’ve had endless
investigations, and the doctors have found it find a reason as to why my heart
is so fast, and neither can they find a medication that can control it. In 2012,
after a tilt table test, the doctors diagnosed me with Postural Orthostatic
Tachycardia Syndrome, or POTS for short. Simply, POTS is described as an abnormal
increase in heart rate on becoming upright, among a myriad of other symptoms.
There has always been a question about whether POTS is actually the cause of my heart rate symptoms, but for now, that’s
the only thing that they have been able to attribute it to.
Then most recently, at the beginning of March 2014, I was
diagnosed with multiple clots in my right lung. I am, of course, nowhere near
as ill as I was last time - but the clots have still had a huge impact on my
breathing, and that familiar feeling of having an elephant on my chest, is
back. It’s come as a huge shock for everyone, especially my doctors, as they
always felt that the only cause of my previous clots was the contraceptive
pill, and now of course, I no longer take it!
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| Hospital - November 2013. |
Since my PE’s in 2008, there have been many times that I
have run to the doctor complaining of breathlessness and chest pain, but
nothing has ever come of it. This time it seemed different - I saw the doctor
on several occasions complaining of breathlessness and despite the fact that my
vitals seemed ok, this didn’t reassure me and I was still determined that
something wasn’t right. Eventually I had a d dimer blood test, which came back
extremely elevated. Shortly after, a scan determined that I had indeed,
suffered further PEs. The lesson I have learnt on this occasion, is that you
should always trust your instincts – you know your body better than anyone!
So now the doctors & I have been left with two questions
- the first being, why and how did this happen again? The second is to work out
what the best long term treatment is, because of the bleed that I had. Currently
I’m on blood thinning injections whilst I wait to see the haematologist, but
there is speculation that the injections might be the better long term
treatment for me. Right now it all feels so surreal, and I can’t quite believe
that I’m in this situation again. But it highlights just how incredibly lucky I
am to still be here to share my story, as my body has been through such a lot
over the past six years. I’m counting my blessings, today and always.
Undoubtedly there are days where I feel sad, upset and
angry; and others where it all seems so surreal and I can’t actually believe
that these things have happened to me. Despite the fact that there have been
some really dark days, and times where I don’t know if I can find the strength
to get through it – I wouldn’t change any of it, it’s made me the person that I
am today; a ‘new me’.
My experiences have taught me so many valuable and important
lessons, all of which will stay with me for the rest of my life;
~ I appreciate those around me so much more, and
love those close to me more than ever before. I know now who my ‘true’ friends
are; those who have supported me, and have held my hand on every step of the
way.
~ I have been reminded just how lucky I am to have
such an amazing & incredibly supportive husband - who takes care of me when
I’m poorly, and who still fancies me even when I haven’t washed my hair for weeks!
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| My gorgeous husband & I, on our wedding day. |
· ~ It has confirmed what I already knew - that I
have the most incredible family, and that my Mum really is my best friend, and
my rock!
· ~ I have realised that I am stronger than I ever
thought I could be, and I will never take life for granted ever again. I am
proud of what I’ve managed to overcome, & will count every day as a
blessing.
· ~ I will always remember that even in the darkest
times, there is always something to smile about, no matter how small it may be!
I truly believe that there’s always a silver lining in
everything that happens, and mine is that I’m able to share my story in the
hope of raising awareness and preventing others from suffering a similar fate.
Over the past six years I’ve had some of the darkest days of my life, but as a
good friend once told me, “it’s always darkest before the dawn”. You’ve just
got to take it one day at a time!
Pink sparkly kisses & cupcake wishes x
