Saturday 30 January 2016

Even the strongest people break eventually

When I woke up last Thursday I didn't need Facebook  time-hop to remind me of what day it was, a day that I will always remember, a day of heartache, pain , tears and sadness a full 2 years has passed since my second failed ablation and I was diagnosed with ist, Lying on the bed in the cath labs and my cardiologist telling me he couldn't slow my heart down I still feel the tears that slowly dripped down my face from the pain of him trying to ablate my heart were I stupidly had told myself to grin and bear it a little longer in the hope it would be fixed, the whole experience of my second ablation was awful, My veins were so bad before hand with how unwell I had been, and attempting to sedate me couldn't be done my veins were collapsing and none existent so I decided along with my cardiologist  to just go ahead anyway with just the local .. Word of advice to anyone going for an ablation always take the sedation as its not the nicest feeling your heart been burnt wide awake compared to my first and third which were a walk in the park I remember nothing just certain little parts were I had came to, but had just been sedated again  ,I felt like my  whole life had came crashing down in seconds, all hope of ever being better, was gone I felt completely numb ,back in the ward I did  not understand any of it, what was supposed to be a simple fix I never thought for a minute , I would be texting Dougie to say it hadn't worked and it couldn't be fixed, I'm pretty sceptical about how the word depression is throwing around but if this is half of what it feels like to be depressed then I really feel for people who suffer badly as it's such a dark lonely place to be in, I spent the rest of the day  in the ward just staring at the walls losing all hope of ever having a normal working heart, and found myself phoning my cardiologist the next day to explain it all again, part of me hoped maybe I had imagined it, or had misheard but I hadn't it was real, it was real doctors didn't know how my heart could be fixed if it ever could be at all.

2 years on and if I knew back then what I know now is a rainbow does shine through eventually I mean my hearts far from fixed but things are a lot brighter it's crazy when I look back over the 2 years at how much I have achieved and done the biggest being a mum, another ablation that did lower my heart even a little ,an amazing 8 attempts on the day to drop it a little, a tilt table test, the lovely task of getting my adrenaline levels checked by having to pee in a large jug for 24 hours,very glamorous, as you can imagine ,more 24 hour monitors,spending the summer in hospital were again i spent days staring at the 4 hospital room walls just hoping some day things would get better,  diagnosed with sinus node disease and hearing my hearts damaged which is something I will never know if it was passed ablations or always so bad, it just stayed hidden ,a stress test which is no fun being on a treadmill with a heart rate of 35bpm that wouldn't increase even with activity  and getting my pacemaker it's been one mad journey,  but I overcome it all, as people say what doesn't kill you only makes you stronger, the hardest part is accepting it all and finding and adjusting to life as your body needs you to ,nobody's perfect it all takes time, I have no regrets going for any the ablations and none with getting a pacemaker at 24, i always just wanted to be better and have never lost hope that even though my heart can't be fixed that over time things will get better, and easier. Having this is a huge part of my life but I will never let it define me as a person, or stop it letting me achieving everything I want to do, and the biggest one right now is just being well and fit to go back to work something I haven't done since October 2014.

A week later waking up on Tuesday morning I woke up feeling fine standing making Dougie a cup of tea before work and Kian some toast it suddenly hit me my heart started to race the dizziness and blurred vision I got down on the floor sitting waiting for it all to pass its something you get used to but it doesn't get easier, you just know it will pass eventually you just hope enough that you don't have to make that dreaded trip to a&e to get medication and fluid through a drip to slow it down  but having the pacemaker means I do have the luxury of swallowing as much ivbradine as I need to slow it all down which was a huge reason I decided to go ahead with the pacemaker for that luxery  ,as Dougie walked through the door he knew right away he didn't need to ask, the colour had drained from my face , to say I felt terrible physically and mentally was an understatement poor Dougie was left watching Kian and getting ready for work all at the same time as I lay slumped on the sofa. Dougie phoned his mum to come down and help with Kian I just couldn't do it and it hurts so much knowing I'm  his mum ,yet  physically I knew I just cant look after him, the fear kicked in along with everything else if I did black out with him alone.The next day after spending most of Tuesday feeling awful and sleeping the day away, I picked up the phone and called the pacemaker clinic were the pacemaker tech asked me to come in straight away, heading to the hospital they checked my pacemaker over and have to say it was the strangest thing in the world when they said they were going to speed my heart up, lying on the bed my heart did start to race by a simple click of a few buttons on the computer, I still don't think I have got my whole head round the fact my heart can be controlled by a computer it's just the weirdest thing,it was over quick like she had promised, she asked me if I had somewhere else to be ,because they were going to have to phone the on call cardiologist to see me , sitting back in the waiting room the fear of the unknown started to hit me, everything running through my brain,  Luckily I didn't wait to long, took into a different room the cardiologist checked my wound which didn't look infected but he couldn't be sure if there wasn't an infection inside, since I just finished antibiotics he decided against it and if it gets any more painful or I feel ill I have to come back, told to rest and giving painkillers for the discomfort I still feel from the pacemaker pocket, but I guess having a 1 year hitting it nearly everyday isn't helping, He started to ask about how I had been feeling unwell and what had made me come along to the hospital ,were I explained how I had been feeling, and how in the space of 2 days I had 3 near faints and the episode before Christmas when I had fell and blacked out when the ambulance arrived my heart was fast,asking again did I feel my heart racing I had to remind him I didn't always notice it how just sometimes  it came out of the blue,the dizziness and breathlessness, and sweating would strike, I also explained how I had a baby and for my own peace of mind I just wanted to know what was normal and what wasn't  ,I explained  what my consultant had told me about my heart being damaged and how I knew I would always have problems but it would help to know what's going to be normal , I got the most confused look ever, were he said you have had an ablation so you shouldn't have fast rhythms, were I found myself explaining I have had three, and it still races , my hearts sinus node was damaged so I knew as my consultant had explained I would always have issues ... its so frustrating when you find yourself explaining and knowing more about it all than a cardiologist does who just sits and stares blankly but I guess that's the problem with having very few cardiologists that know about ist and sinus node disease , the end result was I was giving a 48 hour heart monitor and that since my consultant knew me well and its only a few weeks till I see him in the clinic, that I was just to take it easy keep my fluid and salt intake up and if I feel really unwell or black out to come straight to hospital. I so wished I hadn't messed my fake tan up the other week, not to mention how glamorous it is not being aloud to wash or shower for 2 days, not fun.

I always found Appreciating the good days and when it's a bad day just focus on feeling better tomorrow, we all have that day when we're fed up and exhausted of it all but it's how you deal with it I just feel at the moment it's like a roller coaster, not knowing the next bend or when the ride will stop, if it ever does stop, it's the fear of the unknown what's next, the last time I had met with my cardiologist he always said worse case scenario more ablations, I just want to return to work, get on with life and being a mum, kians so full of life, yet some days I physically just can't keep up with him, and the scared thought of having to make more hard decisions, I don't no what my clinic appointment holds , seeing my cardiologist for the first time since my pacemaker and what's next, he always said he wishes he did have a magic wand but life's not a fairytale as much as I wish this was all a bad dream that I would wake up from I try to stay positive but even the strongest people break eventually, it all just feels hard sometimes  I find myself getting random flashbacks of hard times it's like I had blocked it all out when things were to tough, and I know I coped before so I can do it again , like how I started this post I know I will be looking back on everything in a few months, or a years time thinking mentally i survived it all, it all just makes you stronger.

                                                                Love and Hugs


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Monday 11 January 2016

8 Important things every IST sufferer wants you to know.

Well Since this is my first blog update for 2016 I thought I would kick it off with incredibly important things every IST sufferer wants you to know.  When you have a look on the Internet I always find it so frustrating how IST ( Inappropriate Sinus Tachycardia ) is made out to be something simple just 'a fast heart rate'  but its life changing and debilitating, I like to describe it to people as imagine running a marathon, running on top of another marathon with the flu, its no fun when your heart races everyday and as the day goes on it just gets faster and faster certain factors make it even faster,your blood pressure drops at random times leaving you feeling exhausted worn out .. yeah even when your asleep your heart races so its something that never stops. As all my loyal blog followers know IST has left me with Sinus Node Disease, and my heart is now damaged. Getting a pacemaker implanted means when my heart doesn't beat properly it kicks in to help it and acts like a back up, but even with a pacemaker it does nothing for the fast rates, frustrating right that there's really nothing that helps slow it down?,  then, there's the lovely drug Ivabradine that helps a little, which brings along lots of lovely side effects , I hope these simple facts help sum up IST

comments like this for example are still being used on a daily basis, they can come from anyone friends, family members and strangers. To a person who is battling health day in and day out these comments can be frustrating and very upsetting.

1. IST effects everyone differently.

You may not know but IST effects people differently theres mild, moderate and severe, everyone sufferers in unique ways no 2 people have the exact same symptoms and the severity of symptoms can differ aswell. Some people with IST might be able to do more than another sufferer but this in no way means that just because you can tolerate more exercise or do more, doesn't mean it doesn't effect your life 100% it does.

2. If you got fit it would lower your heart rate.

for anyone who isn't aware being super fit and healthy normally means your resting heart rate is low, Some professional athletes  have a  lower  resting heart rate than normal because there so super fit, but having IST doesn't mean its because your so unfit,  to start off on this subject people with IST are exercise intolerant which means they struggle to exercise, having IST and exercising just increases your already fast heart rate even higher which in turn just makes you feel even more awful, very little exercise will easily push the heart rate through the roof, so no matter how fit you could be, having IST  is nothing to do with how fit you are, you would still have a heart rate over 100bpm, rubbish right ?

3. I do not have anxiety/ its not in my head.

This one is the one that frustrates me the most and I hear people with ist talk about it all the time on support pages etc , to be told its in your head is just the worst thing you can here, because IST is a problem with the hearts sinus node an ECG will always appear normal just fast so when sufferers start having problems, and one of the first tests is an ECG it always appears normal its like because medical professionals have no clue as to why its fast they put it down to anxiety or panic attacks, and its hurtful to know it isn't and to feel like no one believes your actually not making it up that its real and not just in your head, when people ask me  for advice and how I got diagnosed it took lots of 24 hour tape monitors I have actually lost count of the amount I have had its been that many, an ep study a Tilt table test and my cardiologist writing and showing my results asking other specialist opinions to get my diagnose of IST.

4. You don't look sick

IST is an invisible illness, people cant see that your hearts racing, they might see bags under your eyes because your so exhausted from your heart racing day in and day out and I look like a complete zombie without make up on , it's like saying to someone going through a divorce you look like a divorce it just doesn't happen so why should invisible illness be any different, it's hard to describe to people how you look totally fine on the outside but inside your not, It's hurtful when people are ignorant to it all because they can't physically see how bad your heart is or can be, I find myself getting embarrassed using disabled toilets etc to save my heart on the stairs, because it's awful just going to the toilet and using stairs how Unwell you feel and smart remarks are just vile and hurtful it would be so nice to manage to walk up or down stairs and breath like a normal human being instead of a 40 a day smoker, you don't have to look sick to be sick, so the next time you see someone using a disabled parking space etc they don't have to look sick to be disabled.

5. I may appear drunk or on drugs, but I promise I am not.

This is another one that really frustrates me with ist, when I first started have syncope episodes and took to hospital, I was always asked if I had took drugs or been drinking, you may appear to be drunk and on drugs your confused can barely piece words together, and your heart rate looks like you've been on something, it's so hard to explain you aren't it's the brain fog , a syncope episode leaves you confused and you actually feel drunk  it's like your body just doesn't function properly or barely at all and it's even worse because lots of medical professionals haven't even heard of ist so yeah you look like a crazy person who's just made up an illness, it's so hard to explain over and over your not drunk or took anything sometimes it's easier just to say nothing , even last week at my GP she couldn't understand why I black out from a fast heart rate and even said it was impossible for someone young to pass out from a fast heart rate how you wish it was impossible life would be easier for an ist sufferer if they didn't feel the way they do, the best advice I always give when asked by others .. Print off the ist leaflet from arrhythmia alliance web page and always show it, it's easier to show them a leaflet explaining things  than sit and explain were you get crazy looks your really not crazy and making the whole thing up to disguise your on drugs or drunk.

6. Just because I'm having a good day doesn't mean Its no longer there.

Another very misunderstood aspect of IST is the 'good day', 'bad day' side to the illness. To explain very briefly all this means is that on a 'good' day you  won't be suffering as bad as you normally would, the symptoms are very much still there but you can push on and make the most out of the day
A 'bad day' means that a sufferer will spend most of the day in bed feeling extremely unwell, unable to do much at all,your usual symptoms are exasperated 100x more on these days and these days are the days that your heart is beating crazy mad. So yes, even though we can have better days that unfortunately doesn't mean that its all getting better.And the days are hearts do beat fast but not racing, have probably took a lot of resting beforehand and lots of tablets to be able to do so. Always bare in mind, if we did something last week for instance we maybe won't be able to do that again the next week, everyday is different, it all just depends what our hearts are doing that day.

7. Just because we are smiling or not talking about it doesn't mean its not effecting us.

This maybe doesn't go for me because as Dougie would tell you am constantly moaning about my heart and how rubbish I feel, but I tend not to tell others and only Dougie when I'm feeling 100 % awful I tend to carry on as normal and not say a word, people with IST could probably win an Oscar for acting and pretending like everything is ok when inside there fed up, frustrated,  and just longing to feel ok,  the trouble is tell to little and people assume your better and ok, share to much and your scared of being a hypochondriac so really you cant win.

8. There is no cure for IST, its all about managing symptoms.

To this day there is no cure for IST,  Sufferers are often told they could grow out of it basically just 'wake up and its gone' as my cardiologist put it when I was first diagnosed.. yeah I was so glad Dougie was in the room with me to hear that one haha !, but this has never been proven. Since there's no cure, its all about managing to live with it, using medication to control the heart, increasing salt and fluid intake , there's also an ablation but an ablation of the sinus node (either to modify the node or destroy it completely) has been used with some success, but this is variable and may not be long-lasting, as the Sinus node just repairs itself so the IST will always comes back  not to mention an ablation carries its own risks.  Many people with IST are told there to young for an ablation and some doctors even disagree with carrying out one for IST.

Unfortunately, to this day nobody knows why or what causes IST. There is some belief that IST is a result of the sinus node having an abnormal structure. There is another view that individuals with IST might be super- sensitive to adrenaline as the smallest amount of exertion can cause a pronounced rise in the heart rate. However, a number of informed medical professionals believe there is a number of factors and disorders that point to disturbance within the autonomic nervous system.


                                                                   Love and Hugs

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