In 1995, when I was 7, I wrote a poem for school. The teacher liked it so much she entered it in a competition, The 1066 Poetry Competition. I went to the awards ceremony with my dad and brother, but it didn't seem like I was going to get a prize. I remember my dad saying "Never mind, it's the taking part that counts," as the runner-up was announced. But..."And the first prize goes to...Emma Royston!" We were all very surprised! Here it is, see if you like it.
The Magic Box
I will put in the box the moon and the stars
I will put in the box the dogs and the cats
I will put in the box the Earth and Dunkirk
I will put in the box my wine and you
I will put in the box a volcano erupting
and some people running out of their houses
To be safe from danger
And a little volcano which is extinct.
I will put in the box my blood and my heart
I will put in the box a dress of silk
That will gleam and shine for two thousand years
I will put in the box a sack of smugglers' gold
That will last a lifetime
I will put in the box a little old lady
Aged seventy four who will never die
I will put in the box a story
From beginning to end.
Not bad for a seven year old, eh?
Wednesday 26 February 2014
Meeting Bob pt5 - Now
Five years on, my pacemaker is very much a part of me. As a sort of coping mechanism I named it (him!) Bob. I was going to call him Gerry - as in Gerry and The Pacemakers - but that's too common. He's even got his own Facebook page! You can send him a friend request if you like! His name is Bob Pacemaker, and there's a picture of the exact model as his profile picture.
I have had some further problems, but Dave or Sean (the two pacemaker technicians) are always just a phone call away, and always willing to see me without an appointment.
About two years ago I kept feeling my heart racing. Several emergency admissions, and 24-hour ECGs (Holter monitors, they're called) I was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), an abnormal increase in my heart rate when I stand up. My blood pressure is in my boots too. I feel dizzy and sick, and sometimes black out. The symptoms are similar to heart block, but the cause is actually the opposite - too fast a heart rate, sometimes recording by Bob as 150-160bpm. The treatment for this is medication. I am prescrimed both calcium channel blockers and beta blockers. Ironically, the beta blocker is propranolol, the drug that caused my heart problem in the first place! Thankfully, Bob makes sure my heart rate doesn't drop below 50bpm.
Back in early 2008 I would never have dreamt that I'd have a pacemaker implanted in less than a year to treat a condition that could have potentially killed me in my sleep. I'd have had no inkling that something was wrong, I'd just go to sleep and never wake up. This is called SADS (Sudden Arrhythmic Death Syndrome) and because it's an electrical problem it wouldn't be picked up at post mortem.
But to be completely honest with you, if you told me about all the problems I'd be faced with, then told me that I'd be battery powered for the rest of my life? I'd than my lucky starts that I'd be treated by fantastic people who really do care, and be able to rely on the best health service in the world.
I have had some further problems, but Dave or Sean (the two pacemaker technicians) are always just a phone call away, and always willing to see me without an appointment.
About two years ago I kept feeling my heart racing. Several emergency admissions, and 24-hour ECGs (Holter monitors, they're called) I was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), an abnormal increase in my heart rate when I stand up. My blood pressure is in my boots too. I feel dizzy and sick, and sometimes black out. The symptoms are similar to heart block, but the cause is actually the opposite - too fast a heart rate, sometimes recording by Bob as 150-160bpm. The treatment for this is medication. I am prescrimed both calcium channel blockers and beta blockers. Ironically, the beta blocker is propranolol, the drug that caused my heart problem in the first place! Thankfully, Bob makes sure my heart rate doesn't drop below 50bpm.
Back in early 2008 I would never have dreamt that I'd have a pacemaker implanted in less than a year to treat a condition that could have potentially killed me in my sleep. I'd have had no inkling that something was wrong, I'd just go to sleep and never wake up. This is called SADS (Sudden Arrhythmic Death Syndrome) and because it's an electrical problem it wouldn't be picked up at post mortem.
But to be completely honest with you, if you told me about all the problems I'd be faced with, then told me that I'd be battery powered for the rest of my life? I'd than my lucky starts that I'd be treated by fantastic people who really do care, and be able to rely on the best health service in the world.
Tuesday 25 February 2014
Meeting Bob pt4 - Surgery
Three weeks after the appointment with Dr D, I arrived at the hospital with my parents and boyfriend. I was settled into my bed, and had a barrage of pre-op questions and last minute checks. A nurse fitted an IV cannula and gave me some IV antibiotics as a precaution. Looking around at the other patients, I noticed that I was the youngest by at least fifty years!
I was taken to the cath lab (cardiac operating theatre) and had to lie down on the operating table. The nurses covered me in sterile drapes and hooked me up to various monitors. The surgical site was covered in iodine disinfectant, and Dr D injected local anaesthetic. I was also given a sedative to relax me. Apparently most people fall asleep or can't remember what happened, but it didn't affect me like that at all. I can remember it as if it was yesterday.
The ILR device was removed, and the pacemaker was implanted in the same 'pocket'. Using moving x-rays, the two pacing wires were guided down into my heart, one in the atrium and one in the ventricles. Attached to the battery just under my skin, it constantly monitors my heart rate. If it senses that the rhythm is abnormal or beats are about to be dropped, the pacing function kick-starts the heart to beat normally.
The battery needs replacing at least every ten years and the pacemaker is checked regularly. Dr D and Dave, the cardiac technician, performed a few last minute checks, stitched up the wound and I was taken to the recovery ward. The operation usually takes under an hour, but due to some complications mine took over two - I bleed a lot, apparently!
The pacemaker was on 'factory settings' and was evidentally on too sensitive a setting as it was pacing my diaphragm! This - again! - was a rare occurrence and lots of staff gathered around my bed to watch my tummy 'beating' in a regular rhythm! Dave brought a machine which 'talks' to the pacemaker when a special 'mouse' is placed over the battery unit. He switched the pacer off overnight and sorted the settings before I was discharged the next day. I'd had a very uncomfortable night so spent the day recuperating in bed. A family friend, Chris, a senior cardiac nurse working for the British Heart Foundation, came over to check on me.
The next day I spent the afternoon with my friends, running about the town, back to my old self, but full of energy - at last!
TO BE CONTINUED......................
I was taken to the cath lab (cardiac operating theatre) and had to lie down on the operating table. The nurses covered me in sterile drapes and hooked me up to various monitors. The surgical site was covered in iodine disinfectant, and Dr D injected local anaesthetic. I was also given a sedative to relax me. Apparently most people fall asleep or can't remember what happened, but it didn't affect me like that at all. I can remember it as if it was yesterday.
The ILR device was removed, and the pacemaker was implanted in the same 'pocket'. Using moving x-rays, the two pacing wires were guided down into my heart, one in the atrium and one in the ventricles. Attached to the battery just under my skin, it constantly monitors my heart rate. If it senses that the rhythm is abnormal or beats are about to be dropped, the pacing function kick-starts the heart to beat normally.
The battery needs replacing at least every ten years and the pacemaker is checked regularly. Dr D and Dave, the cardiac technician, performed a few last minute checks, stitched up the wound and I was taken to the recovery ward. The operation usually takes under an hour, but due to some complications mine took over two - I bleed a lot, apparently!
The pacemaker was on 'factory settings' and was evidentally on too sensitive a setting as it was pacing my diaphragm! This - again! - was a rare occurrence and lots of staff gathered around my bed to watch my tummy 'beating' in a regular rhythm! Dave brought a machine which 'talks' to the pacemaker when a special 'mouse' is placed over the battery unit. He switched the pacer off overnight and sorted the settings before I was discharged the next day. I'd had a very uncomfortable night so spent the day recuperating in bed. A family friend, Chris, a senior cardiac nurse working for the British Heart Foundation, came over to check on me.
The next day I spent the afternoon with my friends, running about the town, back to my old self, but full of energy - at last!
TO BE CONTINUED......................
Monday 24 February 2014
Meeting Bob pt3 - Diagnosis
Two days after I was released from hospital, Mum and Dad came with me to a follow-up appointment with Dr Dickinson, a consultant cardiologist. After an ECG and a physical examination, she confirmed the original diagnosis of second degree heart block.
A few weeks later I was fitted with an implanted loop recorder (ILR) in a short, relatively painless procedure. Fitted under the skin on my chest, and only the size of a pack of chewing gum, the ILR monitored my heart's electrical activity, 24 hours a day. It stored information and wirelessly sent the data to my cardiologist. I also had a 'remote control' that looked like an iPod. If I collapsed or felt dizzy, I just had to press the green button in the middle. The ILR would highlight the abnormal rhythm and send the information straight to my cardiologist who would analyse the results.
Over the next six months I collapsed countless times, was a regular at the local A&E department and had several emergency admissions to the cardiac ward.
In February 2009 I had a follow-up appointment with Dr Dickinson, who dropped a huge bombshell. Recent recordings had revealed that my resting heart rate averaged 30-35bpm, which - unsurprisingly - contributed to my lethargy and blackouts. However, it also revealed that on several occasions in my sleep, my heart stopped for up to 9 seconds. Thankfully it eventually kick-started again. But this was a serious, life-threatening condition. Dr Dickinson went on to say that the only treatment was to fit a pacemaker. Through my research on my symptoms I acknowledged that a pacemaker was a possibility, but I didn't think it would actually happen. Dr D said that I would be her youngest pacemaker patient. By then I had celebrated my 21st birthday.
TO BE CONTINUED....................
A few weeks later I was fitted with an implanted loop recorder (ILR) in a short, relatively painless procedure. Fitted under the skin on my chest, and only the size of a pack of chewing gum, the ILR monitored my heart's electrical activity, 24 hours a day. It stored information and wirelessly sent the data to my cardiologist. I also had a 'remote control' that looked like an iPod. If I collapsed or felt dizzy, I just had to press the green button in the middle. The ILR would highlight the abnormal rhythm and send the information straight to my cardiologist who would analyse the results.
Over the next six months I collapsed countless times, was a regular at the local A&E department and had several emergency admissions to the cardiac ward.
In February 2009 I had a follow-up appointment with Dr Dickinson, who dropped a huge bombshell. Recent recordings had revealed that my resting heart rate averaged 30-35bpm, which - unsurprisingly - contributed to my lethargy and blackouts. However, it also revealed that on several occasions in my sleep, my heart stopped for up to 9 seconds. Thankfully it eventually kick-started again. But this was a serious, life-threatening condition. Dr Dickinson went on to say that the only treatment was to fit a pacemaker. Through my research on my symptoms I acknowledged that a pacemaker was a possibility, but I didn't think it would actually happen. Dr D said that I would be her youngest pacemaker patient. By then I had celebrated my 21st birthday.
TO BE CONTINUED....................
Meeting Bob pt.2 - Hospital
Arriving at the Medical Assessment Unit at about 9.30pm, I
felt terrified as nurses recorded observations, did more ECGs, fitted cannulas
and hooked me up to a cardiac monitor above my bed. Left alone at the end of
the barrage of tests and questions, my mind was reeling – just 24 hours ago, I
was leading a normal life. I had spent much of my childhood in and out of
hospital because I was born with a cleft lip and palate. After 12 operations
and countless outpatient appointments, I was no stranger to hospital. But the
difference was that before, it was easier to deal with because I was used to
the routine. But this was a whole new entity – a cardiac problem at the age of
20? How? I tried not to dwell on the ‘what if?’s and ‘why me?’s. My dad and I had agreed not to tell my mum on holiday, so she returned to the news that I now had a heart condition. Ta-dah!
The doctors rounds at 9.30am answered some of my questions,
allayed some of my fears. The reason I blacked out was because my heart rate
was much lower than normal. A normal heart has four chambers – the atria at the
top, the ventricles at the bottom. In a normal heart, the atria send a signal
to the ventricles. This stimulates the heart to beat, which pumps blood around
the body. Our pulse is normally 60-100bpm. Some physically fit people have a
pulse of around 35bpm at rest. But ECGs showed that my pulse was as low as
30bpm at rest. As a result, blood wasn’t pumping enough oxygen around my body.
This lack of oxygen made my brain start to shut down , which caused me to feel
dizzy and lose consciousness. The doctors tried to work out what was causing the
heart block. The only plausible explanation was that the propranolol that I
was prescribed to prevent migraines. Heart block is a rare complication of
propranolol, so I was immediately taken off it. I was moved to the cardiac ward
for further tests and observation. My heart rate improved to about 50bpm, which
was positive but not perfect. By Monday I had improved enough to be discharged,
with strict instructions to rest.
TO BE CONTINUED…………………………
Monday 17 February 2014
Meeting Bob - pt.1
Anybody who knows me in person knows all about a certain Bob. For those who don't, or don't know the story, here goes...:
I was put on propranolol as a migraine prophylaxis in Spring
08. While working as a call taker for South East Coast Ambulance Service, I
noticed my heart skipping beats and I felt faint when when I stood up. I
ignored it and put it down to stress and tiredness. Everything came to a head
in the middle if July 08. My mum was away in Romania, so it was me, my dad and
my brother all week. I had 3 rest days and I joined my dad and big brother
James, then 24, on a journey to Ebbsfleet International Station to see my brother off to Brussels where he lives. In
the car on the way back I felt terrible and lost consciousness 3 times. I
booked an emergency appointment with my GP. Before the appointment I had a lie down, but when I stood up to get ready
I blacked out and fell in a heap on the floor.
When I got into the doctors office he felt my pulse in my
wrist. He looked concerned and sent me to have an ECG* in the nurse’s office. The
doctor came in and read the ECG. Again, he looked concerned and asked the nurse
to do another one. I got dressed and the doctor took me back to his office.
He sat me down and said “How do you feel about spending the
weekend in hospital?” I was actually quite shocked. Until this point I had
naively convinced myself that I was fine; that the doctor was just being
cautious. But he went on to explain that the ECG had revealed that I was
suffering from heart block. This floored me. I had dealt with patients
suffering from heart block in my work for the ambulance service. But they were
all elderly! I was a (relatively) fit 20 year old – surely this had to be a
mistake? Stunned, I went to the waiting room to break the news to my dad. By
now it was gone 7pm so the room was empty. After explaining the diagnosis to
us, the GP phoned the hospital and booked me a bed.
Dad and I spent the journey home in silence, both trying to
digest the news. I had just enough time to pack a bag, grab a quick shower and
a bite to eat before we made our way to the Conquest Hospital in Hastings, East
Sussex.
TO BE CONTINUED……………
Tuesday 11 February 2014
Hello
Hello world! I've always been good at writing (so I've been told) and I love talking so I decided to start a blog.
My name is Emma, I'm 26 years old, and have a pacemaker called Bob. I'm very proud of him, so he'll be making several appearances on here. I don't know why I named him Bob, I initially named him Gerry (as in Gerry and the Pacemakers) but after joining a pacemaker support group, I found that Gerry isn't exactly an original name. Nor is Bob, but it's nice and easy to remember.
Anyhoo, thanks for dropping by, I'll post more later.
Don't do anything I wouldn't do!
Emma
My name is Emma, I'm 26 years old, and have a pacemaker called Bob. I'm very proud of him, so he'll be making several appearances on here. I don't know why I named him Bob, I initially named him Gerry (as in Gerry and the Pacemakers) but after joining a pacemaker support group, I found that Gerry isn't exactly an original name. Nor is Bob, but it's nice and easy to remember.
Anyhoo, thanks for dropping by, I'll post more later.
Don't do anything I wouldn't do!
Emma
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