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Shannon - Yheart Blogger

April 2012

Hiya,
 
I feel like I haven't written a blog for ages so this will probably date back quite far. Anyway, another busy few months starting with the snow way back in February - I fell over twice! CPVT and the adrenaline from falling over do not mix well; luckily I didn't do any long term damage and hope no one else did either. I also hope everyone managed to stay warm enough which I know can be hard.

If you remember from my last blog, my bloods are currently being analysed to find the faulty gene. In CPVT1, the majority of people have a mutation in the RYR2 receptor, but my body not being satisfied with a rare enough condition as it is, wanted an even rarer mutation that the geneticist is still looking for. However I have a feeling that I'll test negative for that too.

I've randomly been feeling ill since around February, from tummy aches to a sore throat to dizzy spells and it's not helping my health in the slightest. One of my passing illnesses was chronic chest pain; it was so bad that it even hurt to breathe. Obviously my mum thought it was related to my heart so I spent my Friday in A&E for 5 hours just to be told that it was inflamed where my cartilage joins with my breastbone and the ribs which had a fancy medical name -costochondritis. Apparently once you've had it once, you’re more likely to get it throughout your life, it's nothing serious though, it's literally inflamed where bone and cartilage meet in your chest but it’s just really painful. My school work is also slipping a huge amount due to the tiredness from my medication, but teachers are finally listening to me so I've got a reduced timetable now.

On 17th March, everyone was shocked by the news of Fabrice Muamba's collapse. Members of the general public were particularly surprised that a young man could have a sudden cardiac arrest but the estimate is that 12 young people a week die from undiagnosed heart conditions in the UK. I was really shaken up when I heard the news as was my mum; it was a little too close to home for our liking. I guess every cloud has a silver lining though; his collapse has raised a lot of awareness and made the public more interested in young people with heart conditions.

Back to my so called normal life. I had another drama exam towards the end of term and the entire class got an A*, I also had a French speaking exam which I'm anxiously waiting my results for. My beautiful grown up cousin got married recently too. (The picture is of me at her wedding with one of her gorgeous children). I was relieved when the Easter holidays came round but it's a shame that we've had such rubbish weather for it considering the week before it was blazin' hot. During the holidays I helped my mum babysit my cousin's children, aged 1 and 3, whilst she was away on her honeymoon. I was glad when Thursday arrived so I could get of the noisy house for a day.

On Thursday I attended a Teen Think Tank in the BHF head offices with 8 other young people all born with heart conditions. We started the day with silly ice-breaking games like arranging ourselves in order of our birthdays, etc. A researcher at BHF named Kay then began the first part of the session by asking us about our heart conditions, the process of being diagnosed and our views on transition. We then discussed the uses of the BHF Card and how it could be improved with Sarah, Bob and Rory. After that we went for lunch in a yummy restaurant in Camden less than a 5 minute walk away, this gave us a chance to get to know one another a little more. It turned out there was another girl there, Kate, with the same condition as me! A mere 1 in 10,000 people suffer from CPVT so to meet someone else with it was incredible. When we returned Bob from the young people's team ran the next session. He spoke to us about an exciting new project starting in May giving young people the opportunity to be reporters for yheart. Sarah then took over to briefly talk to us about the weekend stunner in October and what we would like in the "chill out room"; we all sounded like old grannies requesting comfortable sofas and slankets! All in all it was a really fun and interesting day and I would definitely recommend it to everyone.

I've had a pretty lazy holiday otherwise and am definitely not looking forward to going back to school but hope that you all are.

Until next time,

Shannon xxx

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February 2012

Hiya,
 
I hope you all had a lovely Christmas and that the New Year is bringing everyone everything that they deserve. I've had a shakey beginning to 2012 but am hopeful things will get better. I'm just a little fed up of having a heart condition to be quite honest; it's all the little things like my medication making me tired, and I miss sport so much. I also feel like a huge burden on everyone, the one night my mum was going to go out, I of course felt ill with uncomfortable fluttering in my chest so she had to stay in. I've been diagnosed for a year come valentines day and I feel I should have come to terms with everything by now but I haven't.
 
I've had another busy exam month but I've done so many early entries that I'll only have 5 exams at the end of the year! I got my results back from previous exams recently and I PASSED MY MATHS :DDDD. I have loads of free lessons now which is pretty cool but we have to stay in school for them and I wish we could go home instead.
 
My mum keeps dragging me out of the house to have a break from revision to walk the dog and despite the cold, I actually love spending time with my puppy :) Speaking of the weather, I always seem to be much colder than my peers (particularly my hands and feet) but I'm not sure if it's related to my heart in the slightest or just a weird coincidence.
 
My mum, brother and sister have had all the hospital tests now to see if they also suffer from CPVT and thankfully none of them do. My dad however was diagnosed a few days ago after having an exercise ECG and my consultant put him on betablockers straight away. My bloods are still being analysed at the moment to try to find the faulty gene so when that comes back, my mum, brother and sister are all going to have blood tests just to check that none of them are carriers of it and simply not showing symptoms.
 
Anyways, my exams ended last week (till May that is), so to celebrate my mum, sister and I went to the theatre to watch Maltilda; it was amazing! It was also really lovely to spend some time with my mum and sister cuz I haven't done in a while. The next few months should be a lot less stressful, starting with a relaxing halfterm next week which I hope everyone is looking forward to :)

Shannon x

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December 2011

Yet another hectic month, I think this year is going to continue to be pretty chaotic; In fact, I might try to use as many different synonyms of the word "hectic" over the course of this year. No more exams till January though! :D

It's been a real busy month heart wise too. My insertable heart monitor is set to record my heart automatically should my heart rate drop to 30 BPM or rise above 170 BPM. If this occurs, an orange telephone symbol appears on my hand held machine (as seen in the picture above). My mum and I obviously panicked and she rang the hospital instantly, unfortunately, Saturdays and the NHS just don't seem to mix. We had to wait till Monday just to find out that it was a fault in the machine and "they play up all the time, don't worry about it."

The following weekend wasn't much fun either, I left school early on the Friday due to constant fluttering and palpitations in my chest, this continued up till Monday when I also came down with a temperature and flu like symptoms; neither were related to one another, just an unfortunate coincidence. I'd made multiple recordings of the fluttering and was told I was having frequent single ventricular ectopic beats and it was nothing to worry about, however, seen as this is a change in my health the technician passed this information onto my consultant who should call soon to discuss it further.

I've finally started the process of genetic testing now too! I don't even mind the blood tests cuz I find the scientific side of it all so fascinating :)

Once I felt better, I continued with my normal teenage life, going shopping, arguing with parents and stressing over boys when I should have been studying! Last week I was fortunate enough to attend the Jingle Bell Ball to celebrate 50 years of the British Heart Foundation with members of Yheart and what an incredible night I had, I think I may be in love with Ed Sheeran and Jessie J after last Sunday! It was so awesome :)

Until next time,

Shan x

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November 2011

My first proper blog (eek!). Well what a hectic few weeks it's been! To start with, my brother came back from Reading Festival with "festival fever" so I of course got ill too and was well again just in time for school, which was a little gutting to be honest, if I'm gonna get ill I at least wanted a few days off. Fortunately, I was also better just in time for my operation which did gain me some time off.
 
I ended up having my operation under general anaesthetic as surgeons were worried if I would keep still enough to have local anaesthetic, I'm actually really glad that I had the general. My scar is so unnoticeable and as strange as it sounds, I kinda wanted a huge ugly scar cuz I think they look immensely cool and imagine the endless stories you could tell about how you got it! The thought of the operation was so much scarier than the reality of it which was a pleasant surprise.
 
Speaking of my new device, my sister has renamed me "Shandroid" cuz she thinks I'm her little robot, she got me a robot necklace after my operation too and I wear it all the time just to remind myself that I'm braver than I think. I know it was only a very small operation but I was so proud of myself for not shedding a tear that day.
 
After a few days rest at home, I returned to my busy life with joining a new drama group, becoming a young leader at guides, and studying for a maths re-sit. I've recently started looking at colleges too which is possibly one of the most stressful things! I had a hospital appointment reccently to check my new device and any "dizzy spells" that I had recorded. Unfortunately during these "dizzy spells" there were ectopic beats. I saw my consultant later that day who dismissed the ecotopic beats but I wasn't too sure as to why. My doctors never seem to be that good at explaining things :/ I'm kinda starting to dislike  hospitals too which is a shame considerring I'm going to have to be in and out of hospital for the rest of my life, and I wanted to become a nurse! May have to re-think that career choice.

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Intro

  
I'm Shannon (though I prefer to be called Shan), I'm 15 and going into year 11. I have a rare heart condition called Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) which annoyingly went unnoticed for 5 years because it only shows up on exercise ECGs. My consultant is currently advising me to do no exercise which is really hard cuz I love sport!

I have a passion for acting and reccently got an A in my drama GCSE! I'd love to be an actress but that's a really hard field to get into so I'll settle for a job in childcare. I love going out and socialising just like any teenager. I really don't like school but this year I'm just gonna forget all the gossip and concetrate on getting the grades I need for college.

My family are in the process of being genetically tested and we think my dad may have CPVT as well as he had similar symptoms to me (collapses and palpitations). I'm currently waiting for a letter or phone call to confirm the date of my operation to fit a recording device. My doctor gave me the choice of having local or general anaesthetic as I'm still in paediatrics, I have chosen local anaesthetic which only numbs the area. I'll only be left with a small scar under my left armpit so for my first ever operation, it's not looking too bad.

Hope everyone’s had a relaxing holiday and are looking forward to going back to school, college or uni and seeing their friends.