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 

 

 

 

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!

 

 

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

 

Never Take Your Heart Health For Granted

OK – this is a whinge! Today my palpitations are driving me nuts! Frustratingly, yesterday I felt on top form.  In fact, in the last week I’ve been running again on the road and managed three 20 minute runs plus a Zumba class.  So why am I feeling like shit today?  SCAD is a funny thing and there seems no rhyme or reason to the ups and downs of my heart’s behaviour.  I look at people running and feel a sense of loss for what I could do in the past, but didn’t do often enough, and now of course, I just can’t do it.  I would urge anyone who is fit and healthy to exercise now while you still can – make the most of your health and don’t take it for granted because it can disappear in the blink of an eye.  Of course, I’m grateful to be as well as I am and not on the mortuary slab, but even so this really pisses me off!  I may just put my running shoes on in a bit and see how I get on – walking seems to regulate my heart beat and might improve my grumpy mood too!  Thanks for reading – rant over.

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Premature Atrial Contractions (Palpitations): What I’ve learned

A year go, on my fledging blog, I wrote about palpitations and what I did to manage them.  I notice that in the SCAD user group (spontaneous coronary artery dissection) lots of people are asking about how to cope so I thought I’d share what I’ve learned in the last twelve months.

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  • My SCAD is now four years behind me, so every day that goes by, I feel safer.   I know that PACS come and go and I don’t pay them the same attention.  They are my new normal and to some extent, I’ve accepted this.
  • I’ve read a lot about palpitations and it seems that they are very common and according to my GP and specialist, nothing to worry about.  Lots of people without heart problems have them, it’s just that us SCADsters are hyper aware of anything to do with our heart.
  • Occasionally I do panic a bit.  When this happens, I aim to distract myself.  Sadly at bedtime, this is hard to do, as your thoughts are magnified and you can over focus on your heartbeat.  I have a pile of magazines by my bed to flick through – easier than trying to concentrate on my book.
  • I eat to keep my blood sugar stable, as dips seem to set them off – especially getting hungry and missing a meal.  This means avoiding simple carbs: white bread, cakes, pastries, alcohol, chocolate, pasta which cause a sharp rise in blood sugar followed by a crash.  I’m no saint and love all these things, but keep them for occasions, and not for every day.
  • I love chocolate, so have a strip of 85% cocoa Green & Blacks right after my evening meal so there is protein in my stomach too.
  • I aim to have protein, complex carbs and good fats at every meal.
  • Planning my menus each week avoids relying on a quick fix carb heavy meal.
  • I exercise to raise my heart beat – Zumba and regular walking for a few miles at a time.  I couldn’t maintain the running because it aggravated the PACS.
  • I practice Yoga to help with relaxation.
  • I have a set bedtime relaxation routine which includes reading for an hour before sleep.
  • I take comfort in knowing that palpitations are common at menopause, so now I’m almost 54, it can’t be forever!
  • Sally Bee is my role model – she’s a SCADster and looks fabulously healthy on ITV’s Lorraine.
  • Finally, I’m not letting it rule my life.  In the last year I’ve flown long haul, had food poisoning (was terrified that vomiting would kill me) and agreed to be chairman of a registered charity which will involve public speaking.

If you are getting palpitations for the first time, then of course check with your GP, but once you’ve been checked over and told you just have to get on with it, then maybe the above will help.

Two Steps Forward and Three Steps Back: Running Progress

I wrote a few weeks ago about my fledging attempts to get back on the road and my desire to run down the country lanes again.

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Well, all was going nicely until this week.  I’d been running three times a week on the treadmill and thinking I could get outside at the end of this month.

My heart, however, has other plans!  This week it’s been a pain in the neck with PACS (premature atrial contractions) and funny sensations which leave me feeling very mortal.  So much so that I haven’t run now since last Monday and I’m now sitting here contemplating should I go to the gym today or am I dicing with death?

In reality, I know I’m unlikely to just drop dead, but the fear is still with me.  I suspect I’m in a bit of a hormonal storm this week which is the likely cause but I’m hugely frustrated!

OK rant over.  I think I just have to write off this week and start again next week with a reduced schedule then get back on track.  Maybe I can make it down the lanes for Easter instead.  I should be happy I’ve come this far!!