Angel of Fucking Doom! (Black Heart)

I’m very, very unsettled this week.  Lots of internal stuff has been happening and not actually being able to voice what’s been going on has been ever so slightly frustrating.  If I had written this blog over the weekend it would have looked like this:

Red, scratchy, tigers, roar, lion, rip, slap, red, explosion, FIRE, FIRE, FIRE, Raahghghghghgh!! Wanky, fuckity fuck fuck fuck, more tigers, more flames, lots of red, punch, pinch, sulk, scratch scratch scratch, knives, razorblades….. I don’t want a job, thank you, red, purple, sailing stormy waves, wind stormy, warrior, warrior, warrior, black, black, doom, Doom, DOOOM!!! Humph.

Not much sense really is there?  That’s how it’s been for the last few days.  I’ve felt very unsettled and I’ve been trying to figure out why.  I know I had a very emotional, humbling, beautiful experience in my training at the end of last week.  Connections were made, holes opened up, I have a fear of not being able to save, protect and navigate to safety those I hold dear, and therefore I don’t look where I’m going and in Skills Practice I fell down a massive emotional hole of my own, very unexpectedly.  I cried, I apologised, I hate crying in front of people, still I was brave enough to be the first, and hopefully I’ve opened the gate to this path for many of our little group.  Anyway I’m digressing.  Yes that unsettled me, but something much, much more deeper than the shitty weather in the UK was the cause of this storm.

First it was self pitying huffiness and envy, seeing some photos taken over the weekend; it reminded me that though my body is going in the right direction to where it was 4 years ago, I’m still quite a long way off….

Then my sneery anger came through when I was filling out a form to claim JS allowance, I have no job, I have some money but it’s not going to last, so I found myself filling out this form that wanted to know the ins and outs of a ducks arse and how to get there.  It made me pissy and wasted time I would rather have spent, studying my counselling books or choreographing my Bellydance homework.

Last night I accused a friend of being the ‘Angel of Fucking Doom‘, when he was just trying to point out to another friend whose job is finishing in the New Year, that he really should be thinking about looking for further work now.  Then, after short gremilicious rant and the throw away comment I made to finish off:  “Just let us fly, stop trying to bring us down.” I realised I was talking (ranting) about me.

It’s taken until Wednesday morning after a very lovely Yoga practice to really get to the nub of why I’m feeling unsettled.

I’m standing on the edge of my new life, I’m learning how to, for want of better words, how to fly, I’m stretching and testing my wings, my brain, my body. Doors are opening to my empathy, my sensitivity, my soft fleshy inner self, I’m bearing my belly, sometimes literally, (Yep thems the photos) I’m trusting a process I don’t quite understand yet and I’m loving every minute.

So when I hear the words and I KNOW they are meant to help me, support me and that my best interests are at heart:

“Maybe you should think about signing on.”

“I can look over your CV.”

“Do you think you should start thinking about looking for work?”

 I hear:

“Raych, do you really think you should be running about so much, you’ve just come out of hospital.”

“Raych you need to go and lie down now and rest.”

Or….. And I do absolutely understand the logic of this one and hold NO ‘hard’ feelings to the person who said it.

“No more painkillers for you, when you start to hurt, then you know you’re doing too much and you will rest……”

I’m 7years old again or in the last one I’m 16, I’m a natural, bubbly, lively, child, I’m curious about the world, I want to run about because I feel well and I want to be like I’m the ordinary girl that I am, and in not allowing me the ownership of when to rest, of trusting my body, myself, I lose the ability to extend myself, to fully become me.

So in other words, in my ‘adult’ conversation last night, I felt 7years old again, and reminded yet again of the negatives of having a CHD.  Fucks me off big time I can tell you!

So Angels of Fucking Doom, (not my friends, you’re lovely) fuck off, in the nicest possible way of course.  Allow me to listen to my own inner wisdom.  Thank you.

Skipped Beat (Pause)

Hopefully this will be a short one after last week’s long technical, medical, science-y blog.

It struck me after I published last week’s blog that, writing that blog and doing that research, was the first time EVER that I had looked into my CHD….. And that, if you think about it, is pretty strange….

I think I’ve said in several blog posts that I’ve never really ‘engaged’ with my CHD, more often than not it was a pain in the arse to share, to think about it fully, to open myself up to a dialogue with it.  It was the late 80/90’s I was too busy running around, going to parties, getting drunk, sharing spliffs, dancing madly to obscure 70’s music (remember GONG anyone??), having sex, throwing up (possibly all at the same time – I was such a classy bird in my late teens/early 20’s) holding down a full time job, having hobbies and working hard at being just like everybody else around me.  I went through phases – Goth, Hippy, Party Girl, Grunge…. my clothes spoke for my social standing within my world and I was just like my friends, moving in and out of my different social circles.

Anyway that’s another story – trying finding a home, which is what I tend to think of my behaviour back then, maybe I’ll write about that another day.  As I was saying after publishing lasts week’s blog, looking at it, I had the realisation that what I was reading, had happened and is happening to me. Yes that’s right, TO ME.

And this is where I pause, where if I could control my heart, it would skip a beat in the realisation that actually, I’ve been through an awful lot and that’s without looking into the emotional and psychological effects of what 3 OHS and all it’s repercussions have.

In print alone it marvels me.  When I look at the two year old little boys I know, I am amazed to think that I had already had been through one OHS at the age they are now. When I see my 7year old niece I am shocked that at that sweet and funny little girl, if she were me, had already been through two OHS and noticing the 16year old girls in the city, on a Saturday shopping spree, giggling at a some secret between them, trying to be cool, I had got through my third OHS, and though I did my fair share of giggling in the street on a Saturday afternoon shopping spree (I was never cool though), I was already aware of holding something different within me.  I don’t want to say a loss of innocence, because that is the wrong word, more an awareness that the world judged and judged harshly, aware that my independence was already even from 7years old extremely important to me, already aware of those who had power, an awareness that from when I went through the double doors of the operating theatre in 1976 (4 days before my 7th birthday), that I was on my own and I had to deal with it.

But more than that, I think researching and writing about my CHS has given me a sense of ownership over them, much more than I had before.  I think about it in terms of taking back, from what, I have no idea.  But I have more understanding of what exactly medically happened and that somehow helps, even if I am still learning about all the psychological/messy/emotive stuff of what that brings.

Now I flip the coin over and see that I am and I say it again, lucky, I’ve had good sense – eventually (!) – To ask for help when I’ve needed it. I am absolutely aware that there are children out there who have had more operations in their few years of life than I have had in my 40 odd years.   But for me I think it was important to recognise what I’ve been through, count my blessings and look to the future.

Here Comes The Science Bit…..

I’m feeling a bit ‘meh’ today so I’m hiding behind the science. I’m going to write this once because in all honesty I still find it a bit hard and a bit weird telling people about my CHD.  I really don’t like the attention and usually fob off people with – oh it’s a dodgy valve, its ok, I’m being monitored, yeah I had a hole in the heart, blah blah blah blah.

So today with my factual head on I shall be boring the pants off you with all the technical medical terms of what my CHD was and what it still is…..

I was born with a hole in my heart.  The technical term is Aortopulmonary Window – AP Window for short. This means (consulting the trusty t’internet) that there is a hole connecting the major artery taking blood from the heart to the body (the Aorta) and the one taking blood from the heart to the lungs (Pulmonary Artery). The condition is congenital, which means I was born with it.  Somewhere along the line in my genetic make up my heart didn’t build itself quite as properly as it should have done when I was in my mother’s womb.  Also reading about this on the internet, it says this condition is quite rare, I’m not so sure (it’s an American site that I’m reading, Medline Plus, and I’m very British about not big-ing anything up 😉 I also can’t seem to find anything on AP Windows on any UK websites)

So, in the ‘Normal’ heart blood flows through the Pulmonary Artery into the lungs, where it picks up oxygen. Then the blood travels back to the heart and is pumped to the Aorta and the rest of the body.  Babies with an Aortopulmonary Window have a hole in between the Aorta and Pulmonary Artery. Because of this hole/window, blood from the Aorta flows into the Pulmonary Artery, and too much blood flows to the lungs. This causes high blood pressure in the lungs (a condition called Pulmonary Hypertension – more on that later) and heart failure. The bigger the defect, the more blood can enter the Pulmonary Artery.  The condition occurs when the Aorta and Pulmonary Artery do not divide normally as the baby develops in the womb.  Aortopulmonary Window is very rare. It accounts for only 0.1% of all congenital heart defects.

Here’s a picture of what it looks like:


Looks tiny doesn’t it?  It marvels me that something so small can cause so much trouble!!

This condition can occur on its own or with other heart defects; 50% of patients usually have no other heart defects…. Oh shit, I fell into the other 50%, had to be awkward didn’t I 😉

So it took 2 attempts to close this ‘hole’. One when I was just over a year old and again when I was 6years old. How they did this was by Open Heart Surgery (OHS). During the operation, the chest is opened and a heart-lung machine takes over for the child’s heart. The surgeon opens the aorta and closes the defect with a patch made either from a piece of the sac that encloses the heart (the Pericardium) or a man-made material. (I think my patch is me, I’m pretty sure I would have been told if I had something Nylon in me…)

My first OHS was performed by Mr. Milstein, I don’t remember him, my second OHS by Sir Terrence English, before he became a Sir for his pioneering heart surgery especially Heart Transplants.

I don’t want to go too much into the ‘problems’ I faced as a child, as I find it quite challenging as it’s tied up (understandably) with emotions and I don’t want to chat about the emotional stuff today (still hiding behind the science, just call me Spock!), but briefly, I never did PE at school, I was blue and cold, didn’t eat well and didn’t grow well, I was quite listless and tired. So a riveting, fun child then.

After the age of 6 I was left alone for 10 years apart from having 6monthly checkups.  As far as I was aware I knew I had another operation to come when I was 18, I vaguely knew I had a blocked Aortic Valve, but I never engaged with it.  I was too busy trying to be ‘normal’ and part of the gang.  Then unexpectedly at 16 I found out they had brought the operation forward.

The 3rd operation in its correct medical term: ‘Sub Aortic Stenosis, resected with Myomectomy’.  Basically means that my Aortic Valve was narrowed (Stenosed) and damaged by a crazy extra bit of heart muscle membrane sitting under the valve, causing the blood to flow through all sorts of congested problems.

Reading on the t’internet it says: Subaortic Stenosis refers to an obstruction or narrowing at the outlet of the left ventricle just below the aortic valve. In typical Subaortic Stenosis, the Aortic valve itself is normal. – Ahhh I’m not your typical girl, my Aortic valve was blocked too.

In the normal heart, there are two sides, and each side has a pumping chamber, called a “Ventricle”.  The un-oxygenated blood comes back from the body to the right side of the heart, where it collects in the right Ventricle.  The right Ventricle pumps this blood through the Pulmonary artery to the lungs, where it collects more oxygen.  The blood, now full of oxygen, returns to the left side of the heart and the left Ventricle, where it is pumped through the left Ventricle’s outflow tract to the Aortic valve and out to the body through the Aorta.  In a heart with Subaortic Stenosis, it is difficult for the left Ventricle to pump the blood out to the body because of this narrowed area in the outflow tract.

Subaortic Stenosis causes two main problems for the heart:  Extra work for the left Ventricle to pump blood through the obstruction and turbulent blood flow created by the narrowing may damage the Aortic valve, causing an otherwise normal valve to leak.

Luckily I had Discreet Subaortic Stenosis, the more common (hurrah!) form of Subaortic Stenosis which occurs when a membrane made up of fibrous tissue forms the obstruction underneath the aortic valve.  The operation for this condition has a high likelihood of success. The operation begins with a vertical incision in the middle of the chest and dividing the breastbone.  While repairing this area, it is necessary to work on a still, quiet heart, so use of the heart-lung bypass machine is required again while the heart is repaired.

Subaortic Stenosis is fixed by opening the aorta just above the Aortic valve. The Subaortic Membrane can be seen through the valve. The membrane can then be cut out, leaving the left Ventricle’s outflow tract open and smooth.  This operation is called Asubaortic Resection.

It is uncommon to have major complications after Asubaortic Resection. It is possible to have a leftover membrane, though it is extremely unusual for that to cause any remaining obstruction. Other very uncommon complications include damage to the Aortic valve itself, heart block, which is a problem with the electrical conduction of the heart, or creating a hole between the two pumping chambers (Ventricular Septal Defect).  It is possible for the Subaortic Membrane to re-grow. There is no good way of predicting re-growth of the membrane from child to child. Thus, patients with Subaortic Membranes need to be followed for a long period of time by a cardiologist to make certain that re-growth of the membrane has not occurred.

Again this OHS was carried out by Sir Terrence English, apparently he tested out a new piece of equipment (a little whizzy thing that is now used in Angina patients for clearing clogged arteries) on the crazy bit of muscle (the Myomectomy bit) and then stuck his little finger in the valve to open it up further (The Aortic Stenosis bit).  I can safely say that Sir Terrence is the only man ever to have poked my heart with his pinkie!

So that’s that.  What I was left with was a leaky valve.  Go away and forget about it I was told, and in truth, I have managed to do that for the last 28years.

So at present the medical terms for what I have now are: Aortic Regurgitation with Pulmonary Hypertension. So breaking that down into English it means; Aortic regurgitation is where blood leaks back through the aortic valve. This is because the valve does not close properly, (Rembember to widen the valve Sir Terrence stuck his little finger in it to stretch it). With each heartbeat, more blood than usual enters the left ventricle and so it needs to work harder. Mild regurgitation may not cause symptoms. More severe regurgitation can cause symptoms and may lead to heart failure. Medication can help to ease symptoms. Surgery to replace the valve may be needed.  If the backflow of blood becomes worse the left ventricle has to work harder with each heartbeat to pump the extra blood back into the aorta. The wall of the ventricle may then enlarge and may also become thickened. Symptoms can then include: Dizziness and or chest pain when you exert yourself, and/or forceful heartbeats which you may feel as palpitations.

If the backflow of blood is severe the left Ventricle may not function properly and you can develop heart failure. This causes shortness of breath, tiredness, and fluid retention in various tissues of the body.  Medication may be advised to help ease symptoms of heart failure if heart failure develops.   The medication I’m on, Diuretics (water tablets), were prescribed as I was feeling breathless and my ankles and feet were swelling up.  What the Diuretics do is to make the Kidneys produce more urine. This gets rid of excess blood and fluid which may build up in the lungs or other parts of the body with heart failure. Hence the pissing like a race horse quote from an earlier blog.  I was prescribed Angiotensin-Converting Enzyme (ACE) Inhibitors, these are medicines which help to reduce the amount of work the heart does and to ease symptoms of heart failure, but they left me with a yucky cough and the feeling of fatigue, which wasn’t helping an already feeling exhausted me, so I came off them.  The effect was immediate the next day I felt like running a Marathon….!

The Pulmonary Hypertension is raised blood pressure within the Pulmonary Arteries, which are the blood vessels that supply the lungs. It is a serious medical condition that can damage the right side of the heart, making the heart less efficient at pumping blood around the body and getting oxygen to the muscles.  Symptoms of Pulmonary Hypertension include: shortness of breath/fatigue/feeling faint or dizzy/chest pain/racing heart beat (Tachycardia)/leg swelling – I had it once, my left leg swelled up so much I couldn’t pull my boot up, it was quite scary!  Luckily, I only have MILD Pulmonary Hypertension.

Apart from that I am well, I can dance, I can function on an everyday level, I have my bad days (see last week’s blog).  I had a scare last year where it was thought the membrane had grown back under my Aortic Valve and another hole (Atrial Septal Defect mentioned above) had appeared but with lots of tests it turned out ok.  I’m lucky!  I just have in addition to the leaky valve and the mild Pulmonary Hypertension something simply called ‘Mad Muscle’.  This is the word Cardiologist Jane Somerville came up with to describe heart muscle that wasn’t behaving how heart muscle should behave!!  My arrhythmia and palpitations are tiresome to deal with but after researching my 2nd operation it may well be that all the surgery I’ve had has buggered my electrical wiring and I’ve got a bit of heart block with the electrical conduct of my heart.

So there we are a scientific research into my CHD, thanks to the Internet/Wikipedia/MedLine Plus/ Website.  What amazes me is that compared to what help/support/medicines/OHS procedures/equipment that was around when I was first born and diagnosed with a CHD to the advances in all these areas in the last 45years.  You can now do a lot of OHS by keyhole surgery, reducing both physical and emotional trauma for the patient, reducing time in hospital and time in recovery.  Advances are being made all the time, I’m hoping I can hold out a few more years before I need any more surgery as I hope it will be keyhole, as I have been told that a 4th OHS is very risky…

But just touching a little on the emotional side that I’m trying to avoid today, These wonderful, Surgeons, Cardiologists etc who have worked so hard on patching us up combined with the pressure of an NHS service crumbling under a strict government regime, that still manages to more often than not, deliver outstanding results, I just feel that more time needs to be taken to look at the emotional impact of what is going on.  Cardiac surgery may have progressed in leaps and bounds over the last 45years but taking care of the emotional self, the spirit, the bit not on paper or recorded on an Echo Cardiogram, I think that bit needs a little look at, a little cuddle maybe.  That’s why I want to become a counsellor, this type of care needs to be addressed and my Cardiac Nurse is with me on this one.

Beat-ing Yourself Up…..

Hands up all those who have, to some degree, beat themselves up?  C’mon we all do it, don’t we?  Even if it’s just a bit…?  Or is it me that finds themselves worrying about giving the wrong coffee mug to the boss at work, or spend ages agonising over how I used the word ‘righting’ instead of ‘writing’ in my last blog post (I’m too bloody lazy to change it by the way ;)) or spend the morning silently chastising myself because I may have laughed too loudly in a group of friends at a restaurant, at something that I found funny the night before, or for not realising sooner that I had absent minded-ly run over the foot of someone with my shopping trolley in the supermarket this morning…..

It doesn’t matter how trivial or important the ‘beating’ up is I think we all do it, I know I do, but I also have the added ‘baton/punch/slap’ that is… I have a CHD.

Let me explain.

Last week I was having a great week, things were ticking along nicely, I had spent most of the week doing healthy things like Pilates, Yoga and Bellydance classes, meeting friends for discussions about theatre and theorising why American women seem so much better at Impro (sorry I still can’t call it Improv) than British women.  I was looking forward to my second training session (I’m training to become a counsellor/psychotherapist) on the Friday.

So far so good.  Thursday evening I began to feel tired, by Friday morning I was aware that I was in the middle of an energy crash.  This happens sometimes, my energy just vanishes, it’s not just the ‘I feel a bit tired an early night will sort it’, it’s the ‘shit, I can’t actually get my head off the pillow, walking to bathroom is painful’, sort of energy drain.  It’s cruel and it’s embarrassing, it means I’m spaced and vacant for the day, nothing makes sense and I make no sense, and when it comes it leaves me angry and frustrated at the waste of time, energy and the day it robs me of.

I drag myself to class, I struggle through the morning but manage to participate, during the lunch break I leave the room where we all gather to eat our lunch, swap stories and chat getting to know each other.  I leave the new friendships I’m beginning to form and sit in the garden where it’s cold and close my eyes.  I am aware this looks and is anti-social, but the noise of the chatter in the room is overwhelming, I can’t concentrate on what people are saying to me, it’s physically painful.  The afternoon is a disaster, I’m hanging on with the delightful feeling of my arrhythmia (irregular heart beat) kicking in, lovely. I just want to sleep.  It’s the most important session of the day, Skills Practice, we get a demonstration by our tutors, I am supposed to be concentrating on what they are showing us, all I can think about is….

“How the fuck am I supposed to help people when I feel like this?!!!!  How am I going to be able to be present and listen to a person who needs my help when I feel like the room is closing in on me and I am drowning in exhaustion? I FUCKING HATE MY CHD! I HATE IT.”

I spend the weekend in a silent anger at myself, beating myself up about the whole situation, the agonising indecision of have I made the right decision to choose this career path? But most of all blaming my CHD which causes the exhaustion. Blaming my CHD for not allowing me the fitness of everyone else my age who loves to dance, and take Pilates and Yoga classes.  Blaming the exhaustion, which is a way of my body telling me to take it easy, which just happened to manifest itself on a really important day. The timing sucked!

Then I have a break though in my anger and sulkiness.  I realise why I am angry rather than just being angry, I am angry because my CHD, which makes me feel this drained and exhausted – not always, but sometimes – is separating me from others, this is something that doesn’t sit well with me.  I hate feeling different, not part of the gang.  My CHD is reminding me in it’s little ‘you’re very tired today’ way that it is present within my body, within my genetic make-up, within my personality and however hard I try to fight it, get angry at it, however hard I try to ignore it, push myself on and not be defined by it, it will in it’s little quiet ways remind me that it is part of me.  I have to accept it and work with it and y’know, it’s ok to have bad days, I should count myself lucky it’s only a few days and not EVERY day, not easy I know when it’s wrecking your plans, but maybe I should start learning to be at ease with this a bit more.

Hard Core Heart Cor

Right so we’re back on track…ish…

I wanted to say a little bit about why I chose the name Heart Cor for my blog.  As you know this blog started from a Facebook post that wrote in February 2013 (see First Beat),  I got a lot of positive response and with many discussions over lunch at my fave coffee house (Mocha Mocha –St. Michaels Hill plug, plug :o)) with my friend the Blueglass Boy he came up with the name Hard Cor.

Now Cor being Latin for Heart (he’s very knowledgeable is the Blueglass Boy, you should follow his blog).  Well it sounds great but I wasn’t so sure, I mean, really, I think it sounds like a porno site, can you imagine my mother, who is not particularly techie minded stumbling upon my blog name and thinking her daughter had gone into Hard Core Pornography for a career change….. Then considering my age what sort of site it should be…… *SHUDDER!!!*

Anyway, moving on… I liked the play on words and having a little think came up with my own version: Heart Cor, soo, basically the title of my blog is ‘Heart Heart’ but there you go.

Why did I start this?  Well, as I said, to oil my rusty writing skills, but also because I wanted to explore myself under the ‘title’ of CHD (Congenital Heart Defect/Disease/Distinction/Condition) I’ve been exploring this with a Psychotherapist (more on that later) and now I feel ready to share.  My tag line is ‘Working hard not to be defined by the thing that most defines me’, and yes that is how I feel.  Though most of my life I’ve managed to ignore the cold hard fact that I have a CHD, it has defined me on an unconscious and lately a very conscious level, but whether I let it or not is probably what this blog is going to be about.

I hope this blog will be very real, real in the way of me being honest how I feel in the moment of righting, at the moment I’m very happy, I’m very ‘up’, I am sure there will be dark days, I don’t want to come across as so bloody happy clappy but neither do I want be so depressingly dark, believe me there have been very dark days.  Days were I’ve wanted to take razor blades to my arms, of days of not leaving the house because social settings panicked me (thanks to my friends who physically took me to these things and were there for me, or for that fact I can drive and could leave when it got too overwhelming).  I now feel in a place that I can look at myself and write something balanced and real.

More and more children are surviving into adult hood with a CHD, I have been very lucky, if I didn’t have my first operation when I was just over a year old. I wouldn’t have made it to 2years old. 3 Open Heart Surgeries later I’m in my 40’s and reaching out to opportunities that I think are rightfully mine, how have I managed, coped, could/can I do everything that these opportunities give me…..? Let’s find out…. (See Dancing to the Beat to find out about one recent opportunity!)

I’m going to finish with slightly (ok, very much so) ripping off comedian Tim Minchin, whom I really admire:

I am but a small insignificant speck of carbon in the vast and beautiful universe, but I happen to have a CHD and if this small insignificant person that I am reaches out to one other small insignificant person and can just let them know that life doesn’t stop when you have a CHD, that adventures are there for the taking (with some care) then that’s just great.