It’s All Good!

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Saw my consultant this morning and it’s great news!  No evidence of dissection in the head or neck, or of  TIA.  So after weeks of worrying myself sick, I can get back to normal.

I know not everything is fixed as my heart is not right, but this is such a huge deal for me that I feel like I can make a new start.

One thing stuck on my mind through all this.  Janet Street Porter was on TV and was saying ‘If I don’t like doing something, I stop doing it immediately’.  I thought to myself, blimmin’ heck, she’s right.  If I’m not finding joy in something and I don’t have to do it any more then just stop!

This has led me to ditch a number of things that were just not working for me any more and now I have the all clear, then I am going to focus on what I really enjoy.

The things bringing me joy at the moment are blogging, travel, gardening and being creative with crafts.  So for now, that’s where I’m putting my focus.  I’m planning to go back to badminton, Pilates and yoga too.

One good thing to come out of all this is that I’ve significantly increased the amount of walking I’ve been doing because it was the only exercise I was allowed to do.   I’m loving getting down the country lanes and will build on this.

I’ve also reviewed my diet and in a bid to be as healthy as possible, have made a few more positive tweaks, so again, this is something I can build on.  You may have noticed I’d stopped whingeing about being fat – that’s because I had bigger things to worry about – so I should try and keep that mind set that food is fuel and also medicine.

So, onwards and upwards!  Where’s that travel brochure……..

A Plea To Be Treated Holistically

I’m struggling with a few things at the moment and don’t know how to sort it out.  I have a number of medical problems that are being treated individually, but they seem to contradict one another in terms of treatment and what I really need is for someone to sit down and look at the whole blimmin’ lot holistically rather than treating each thing in isolation.

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If you read my blog you’ll know that I’m waiting on the results of the MRI/CT scan I had a couple of weeks ago for a suspected dissection to the carotid or vertebral artery.  I have a hospital appointment on Friday but I anticipate that this will deal with the one issue only. I’m guessing we will have a chat about stroke risk and how I can mitigate it.   What about all this other stuff though?

You also know about my heart attack, caused by SCAD.  Since this happened I’m left with premature atrial contractions which are irregular heart beats.  I’m told this is not serious or life threatening in most cases but I am prescribed a beta blocker for it.

Now the trouble with beta blockers is that they slow you down.  Not a bad thing you may say.  However, combined with my next problem, an underactive thyroid, then that makes me doubly slow.  If I have a few days of action, then I may spend the next couple of days in bed, good for nothing.

Well can’t you take levothyroxine for your thyroid? Well yes, but guess what, if I take the recommended dose I get more palpitations and I twitch incessantly at night.

So, if beta blockers make you slow and PACS are not dangerous, why take the beta blocker? Good question – I asked my GP to refer me to a SCAD specialist, which he duly did last November – nothing has happened.

I’m also told I have high cholesterol.  Must be down to diet you say.  Have you seen how much porridge I eat? Did you know that an underactive thyroid can raise your cholesterol? Would taking the correct dose of thyroxine sort it out? Who knows as I can’t tolerate it.

Why not take a statin then?  Great idea.  But don’t statins make your arteries more flexible?  Isn’t the reason I had a SCAD the result of over flexible arteries in my heart? Oh yeah! Back to the drawing board on that one then.

As you can see, I don’t know what to do.  If I put it in the hands of the professionals, which one’s advice do I follow, because I can assure you they all want to treat me with something different.

They want to fix whatever I have presented with and of course that makes sense, but I, you see, want to be treated as a whole person.  Who will look at all this stuff and make some sort of judgement call?

Who knows.   I don’t.

 

 

Getting Involved With The British Heart Foundation

In 2011, aged just 49, I had a heart attack.  It came out of the blue after a period of stress at home and at work.  It turns out I have a rare form of heart disease called spontaneous coronary artery dissection (SCAD).  Often not diagnosed until post mortem, this disease claims the lives of many otherwise healthy young women and men who have no obvious predisposition to heart disease.

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A SCAD is a tear in the coronary artery which creates a blockage to blood flow in the heart, resulting in angina, heart attack, or death.

SCAD has been likened to a lightening strike – it comes without warning and there is no way (yet) to predict or prevent it.

For six months after my heart attack, I had no idea it was attributed to SCAD. I  was bewildered and looking for answers.   It was during this time that I was most grateful to the British Heart Foundation for their support.

I was given leaflets at the hospital and one of the first things I did was ring the BHF helpline for advice and support.  They were great and so helpful in just making me feel more safe and secure.  I scoured all the leaflets they provided and took the advice on board.

I was pointed in the direction of my local heart support group and soon joined the committee, using my project management skills to help the group start up a gym.

I  joined in local fundraising efforts by collecting at supermarkets and in the city centre.  I also manned a BHF stand at our local Women’s Day to share the message that heart disease affects women as well as men.

I was even lucky enough to be invited to the BHF labs in Manchester to see first hand the research that takes place.

I am most grateful however for the funding that The BHF has provided into SCAD research.  The BHF is first and foremost a research charity and a SCAD patient group campaigned to get funding for research.

The research project has been running in Leicester for over a year now and I’ve been lucky to be chosen as one of the participants.  The research involves a review of family medical history, plus a number of tests. including an MRI, ultrasound and skin biopsy.

Although I was slightly nervous of what else the study might find (ignorance is bliss after all), the sensible part of me wanted to chat to an expert about the condition to better understand the risks.  I also wanted to know the risks facing my sister and nieces as research so far shows a genetic link.

The study day was in fact extremely helpful and considerably eased my anxiety once I was able to understand some of my ongoing symptoms such as an irregular heartbeat.

I’ve never taken part in a study before, but I’m so glad I did as we really need to understand why SCAD happens.

One of my greatest fears is that I will have another occurrence.  Many people have multiple SCADs and there is currently no known way to predict or prevent them.  As I write this blog post I’m waiting on results from an MRI and CT scan of my head as there is a chance that I may have experienced another dissection, but this time affecting arteries supplying  blood to my brain.  Wish me luck with this one!

SCAD now has its own charity in the UK, BeatSCAD which is now fundraising in its own right.

From wearing red in February, to baking scones, there are lots of ways to support the BHF and I hope I can continue to do so.

I’m hopeful for the future and maybe together we can find some answers!

<a href="http://candyflossdreams.net&quot; rel="nofollow" title="Candyfloss & Dreams"Dream and Sparkle Linky 

 

 

 

Just When I Thought It Was Safe To Go Back In The Water

I’ve been writing lately about how much better I’ve been feeling and how I could see light at the end of the tunnel; post menopause; SCAD five years behind me and all that.

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I hit 55 this week and celebrated with a fabulous luxury UK break.  Then, the day I get back from my holiday, I end up in A&E with a suspected TIA.

Pissed off doesn’t even begin to describe how I feel.  I have to go for a scan of my carotid this week at the TIA clinic. From there, a firmer diagnosis can be made, but I can’t help but think it’s all tied up with SCAD.

Unfortunately, stroke is a common feature in our family, and doesn’t come with a happy ending.

So banned from driving for four weeks and back to worrying about dropping dead or having a full on stroke.  Happy Days!

 

beatSCAD: An Update Five Years Still Alive and Kicking!

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Hello fellow Scadsters!

A couple of weeks ago, Becks Breslin, a pioneer of the UK beatSCAD charity, asked me to provide an update on what life is like five years post SCAD.

The beatSCAD website has lots of useful information for those newly diagnosed with this scary and bewildering condition.  I really wish it had been around five years ago when every cough, sneeze, ache or pain threw me into panic mode thinking I would have another dissection.

Anyway, still alive and kicking, this is the update I provided for the website:

I’m now over five years post SCAD, just coming up to 55 and the happiest I have ever been in my life. So what’s changed?
    1. I got healthy through eating well and exercising moderately (gardening, yoga, walking, badminton)
    2. I chucked my stressful job and now write a 50 plus lifestyle blog over at https://flowerpowerlife.wordpress.com/
    3. I re-joined my choir (Chester Ladies) and will become chairman next month.  We are a registered charity and I will be doing lots of public speaking (as well as singing of course!).
    4. My strategy for the future is ‘always have the next holiday booked’ so you have to be there for it!
    5. I travel extensively, although on a budget.  The picture is of me on the Brooklyn Bridge during a recent girls only trip to NYC!
    6. I don’t have much cash any more, but I spend on experiences, not things, which are no longer important.
    7. I’ve embraced charity shops!
    8. I am no longer scared of lifts (the worst already happened and I survived)
    9. I no longer get panic attacks (ditto)
    10. I still get premature atrial contractions, days when I’m exhausted, and days when my heart seems to play up all day, but I have faith that it will pass, so I don’t dwell on it.  I take my medication and hope for the best.
So what does the future hold?  Well, I’m thinking I may reach menopause this year (it’s now seven months since my last period) with the hope that my PACS will go away, or at least improve.  I’m waiting for my referral to Dr Adlam to come through so that I can perhaps ditch some of this medication.  I want to travel more, blog more, experience more, do more and just have fun.  I’m saying ‘yes’ to everything I can!

 

 

Fat Crisis

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Absolutely mortified to get on the scales this morning and find I have put on even more weight! No surprise really, as last week I put all my effort and energy into my Scones For SCAD coffee morning and forgot to concentrate on my own health and wellbeing.

On Wednesday I was feeling tired and  so ‘treated’ myself to a family bag of Minstrels and scoffed the lot. Quite when I’m going to get the message that treating my body involves nourishment, not crap, I don’t know.

What I do know, is that when I’m tired, I take my eye of the ball with healthy eating and the fruit languishes in the bowl, eyeing me hatefully.  The chocolate and biscuits disappear at an alarming rate.

So, here we are again, in crisis, beating myself up, full of self loathing,  hating my body and wondering what the hell to do about it.

At least I can get in the garden now that Spring is upon us and get my backside off the sofa!

Christine x

Scones For SCAD Saturday 27 Feb 2016

To celebrate February’s National Heart Month and Rare Disease Day (29 February), Beat SCAD has launched a fundraising event – Scones for SCAD! I will be hosting a coffee morning at my home on Saturday 27 Feb for friends and family, as will many fellow SCADs survivors!
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Beat SCAD launched in 2015 and so far, the group involved in setting it up, along with other SCAD survivors have provided an enormous amount of support to people who have just suffered a SCAD and are bewildered and asking ‘why me’.  The SCAD support group is fantastic and the charity is working towards funding for more research into why SCAD happens and how it should be treated.
The first thing you do when this happens to you is search for answers, and believe me, I did, and found very little.  My GP had never heard of it, and the cardiologist I saw had seen only one other case in his career.
Until recently there was hardly anything known about the disease, but the team at Leicester are learning more all the time, with the help of some willing volunteers (like me) who are happy to be scanned, biopsied and measured!
There’s still a long way to go in raising awareness so that young women are not turned away from A&E because they are ‘too young’ to have a heart attack.  I was told it must be indigestion as I looked ‘too healthy’.
February is the first of hopefully many fundraising efforts – let’s beat SCAD!
This is a summary provided by Beat SCAD:
What is SCAD?

Spontaneous Coronary Artery Dissection (SCAD) is a rare heart condition that can’t be predicted or prevented. It affects people with few or none of the normal risk factors for heart disease.

o SCAD can be fatal, cause heart failure, cardiac arrest, require heart bypass surgery, stents or medical management.

o SCAD occurs when a tear or a bruise develops in one of the coronary arteries resulting in a blockage that prevents normal blood flow. This can result in a heart attack.

o SCAD affects mainly women. Around 30% of SCADs occur during or soon after pregnancy.

Menopause, extreme stress and exercise and connective tissue disorders have also been associated with SCAD but as yet we don’t know exactly what causes SCAD.

What is Beat SCAD?

Beat SCAD was established by SCAD survivors whose mission is to:

o raise awareness of Spontaneous Coronary Artery Dissection (SCAD) among cardiologists, GPs, emergency staff, cardiac rehab staff and more, as well as SCAD patients, their family and friends

o provide support for SCAD patients, family and friends

o raise funds for research into SCAD