Re-wind

So 2016, what’s to say that hasn’t already been said.

Not much really.

I’ve not been here much this year.  My last post was a year ago, and that was a pretty emotional heartfelt post.

2016 proved not to be much better.  You see Dad’s Cancer came back.  This time it was his liver.

So everything that I wrote back on 31st December 2015 came back twice as large, twice as emotional, twice as frightening and twice as punchy. Like someone had rewound the tape (showing my age there 😉 ) and played it again only this time it was twice as LOUD!

I was aware that I was carrying that when we faced again, this bloody bastard unreasonable disease that insists on eating people up without thought, concern or awareness for whom it decides to try destroy in its consumption of life.  I don’t want to talk too much about Cancer, my friend Fluff writes about it so much better than me and you can read her story of living with and surviving Breast Cancer here in her blog –  http://baldybitesback.weebly.com/

All I can talk about is how it effected me. I found myself stretched.  Stretched far beyond what I thought my capabilities were, I found myself under the most intolerable stress I have ever encountered.  I found myself being my parent’s parent, my father’s counsellor, my mother’s carer, my parent’s referee, the big sister I am.  I became of a huge bowl of water, very similar to the bowl that the tai-chi student visualises when they first learn the practice of tai-chi.  I was carrying this huge bowl of water in my solar plexus and every knockback, negative encounter with a doctor or nurse, everything that could not be tolerated by others I absorbed and added it drop by drop to my bowl, hoping it wouldn’t spill over the edge.

As my father’s condition worsened, as his body shut down and he withdrew from us I quietly turned myself inside out, to try and become the perfect daughter.  I found myself wearing more feminine clothes, (I am a bit of a tomboy forever in my jeans) I brushed his hair, manicured and filed his nails, talked about the Olympics, football, stupid things the cat had done.  The odd times he did connect with us I laughed at his jokes, took his rage on the chin and made silent bargains with the air to get him through this.

You see, I know what it’s like, being in hospital, I know the dread, the loneliness, the vulnerability, the waiting.  Waiting for the sun to rise, waiting for your loved ones to come through the door, waiting for doctor, waiting for the next test result , waiting to be well again, waiting for all this nightmare to stop.  For me that is what hospital is, a ward of people waiting.  And I realise now, I had become re-traumatised through my father’s experiences, I was re-living some of my own hospitalisations.  What had made me empathic and sensitive to my dad’s needs, were my own needs at the time I was in that hospital bed, bewildered, frightened and lonely.

But again we are so lucky, Dad rallied, after complications, infection and pneumonia we were able to bring him home after a month and half hospital stay.  And that’s when I realised that I was re-traumatised.  I went back to my training and my work and ran into a brick wall.  My body was so tired, my emotions were all over the place, and my anxiety was through the roof. I didn’t know what was my stuff and what was my dad’s stuff. Everything was intertwined and I was suffocating. I needed to separate myself from it. It’s now 4 months of being kind to myself, resting, withdrawing from the social scene when I needed to, being, to put it bluntly, selfish, I am now feeling ready to be curious about the world once more.

So have a peaceful New Year.  I am not going to declare any grand hopes and wishes for 2017, the world is in change and with change comes loss and with loss comes grief, and with grief a door that opens….

Role Models

Now this is a strange one.

I had no intention of writing anything on the subject of Role Models, it hadn’t even crossed my mind.  Until Wednesday.

Tuesday the news broke that Robin Williams, American Actor, Comedian and Improviser had died.  The internet was awash with headlines and quotes, Nanu Nanu – Mork calling Orsin, and so on.

Yes it was shocking that a man who had seemed to battle so many demons and won should take his own life, but for me, although I remember Robin Williams as Mork from Ork in Happy Days before the Mork and Mindy Days, it was his open and frank interview with Jonathan Ross a few years ago that made me sit up and really pay attention to the man whom I’d often thought of as just a talented Actor, Comedian and Improviser.

You see I watched this interview as I was going through a bit of a health scare of  my own and I was struggling to find the words to explain how I was feeling, and here Robin Williams was describing exactly how I was feeling, what he had been through and how it made him feel and yes, he made it all so very hysterically funny, but he was using words I could connect with, he was, watching him on the TV screen, someone who had been through it and come out the other side.

And through these last few days I was wondering why the news of his death had touched me more than I thought it should have, and I guess it’s because I looked up to him as a role model.

Yes that’s right I said Role Model.  You see, even though I have been in denial a lot about ever having a heart condition especially since my last OHS where I believed I was sorted and that day where I would need more surgery would just never come, I have actually never had a positive role model who has had a CHD. Though Robin Williams’ aortic valve replacement was not due as far as I can tell to a CHD, it’s the same valve that I will need replaced.

I also have a soft spot for Arnold Schwarzenegger, his is a CHD, born with a defected aortic valve he was lucky in that he was financially able to get his replacement valve made from his own transplanted tissue! If I had the chance to do that I would do it in a…ahem… heartbeat…  His reasoning – he would not be able to participate in his rigorous exercise regime if he had the mechanical valve surgically grafted to him, (and just knowing that has handed me a rather large bag of questions that I’ll explore another day).

The definition of a role model:
A person whose behavior, example, or success is or can be emulated by others, especially by younger people.
So yes, I can say that these two people have been role models to me, they have lived through something I’ve yet to do, it has informed their work (Williams – did a whole stand up tour based on his OHS experiences) and they have embraced it has part of themselves – something if I am honest I still feel a bit odd about doing, and they have talked openly about their experiences.
Looking closer to home I guess my own mum should she have been my earliest and most consistent role model.  Herself having a CHD, was lucky enough to be one of the first children in Norfolk to have OHS in the 1950’s and lucky enough to have such a good surgeon that her particular defect was 99% corrected.  So I guess she never felt the issue of having a CHD weigh her down much (this is a massive presumption on my part), never had check ups after she was discharged, and went on to lead a very active and sporty life.  To me she was superwoman, and I often struggled with the understanding that my own personal defect was very different and much more complicated than hers, thus resulting in 3 ops and never fully being discharged from check-ups and tests, and never allowed to be sporty, and I guess I resented that fact and hence went into some sort of freakish denial in my late teens/early twenties where everything was fine….
I guess I am understanding more and more now I am at that point in my life where I am mixing with families and friends who have children, how important it is to have positive role models, to see that it’s ok to have defects and imperfections and still be successful, contributing and important part of our own little worlds.
So going back to Mr. Williams, he spoke on that chat show making his experiences funny, but I could see underneath the terror that he must have been feeling at the time, they way he kept saying ‘I came back’ something I’m finding out that a lot of people who have had a major surgery and specially those that have had several surgeries often say ‘I came back’ it was like an unspoken bond between us, he understood where we had gone and how we had come back.  He also said something else – before his valve was diagnosed as very badly damaged, he kept saying that he was feeling like a ‘clockwork toy winding down’ It was exactly how I was feeling at the time of watching him in this interview, somebody had taken my key out and I was winding down, slower and slower and no energy to get things done.  Luckily for me my diagnosis was something completely different from being heart related and it was sorted, but the symptoms never the less, were very similar.
And as I write and remembering the newspaper headlines I have read today, I am struck by something else.  It makes me sad, but I understand.
Rest in Peace Robin Williams, guy that just happened to have a heart defect….

 

 

Secondaries….. or what they didn’t tell you…

Looking back over the past 6 months of blogging – can you believe that!! I’ve managed to bore you proper for 6 whole months!! I’ve realised that my last few posts were not really related to the whole heart business…. (no pun intended, honest).  So I’m thinking I should redress that a bit.

So… Here’s a bit of information about the stuff they don’t tell you when they’re patching up your holey heart, this is purely subjective on my part, these things happened to me and will not necessarily happen to anyone else who has the same defects as me.

When you have Open Heart Surgery, as the title suggests, your heart is literally opened. To access the heart you chest is cut open and your sternum sawn in two and held apart by rather large vice grips, much larger versions of what you would find in a woodwork shop.  The heart is stopped from beating and the heart/lung bypass machine kicks in to do the blood circulating for you and the ventilator takes care of your lungs and breathes for you.  The pericardium, the sac surrounding and protecting the heart is cut open and then the surgery begins on your now still and technically dead heart.

So this has happened to me three times.

Apart from the obvious fat flat scar running down my chest and the fact that I was prone to chest infections and colds as a little girl, there was little wrong with me, apart from a fierce independence (I would just take myself off on walks along the back of the block of terraces  that we lived in at the time and make friends with any adult who happened to give me the time of day).  That was also coupled and contradicted with a massive anxiety not to be left alone when I was ill – man, can you blame me, after OHS??

Oh yeah, I also had all of my top teeth removed as they went bad after a lot of sugary antibiotics and nothing to do with bad oral health!  So from the age of 3 till my second teeth kicked in (wonky and not all at the same time), I would greet you with a gummy grin!  Lovely!  (Am I painting a picture of delightful-ness of me as a little girl – think of that along with the lovely homemade 70’s outfits I was dressed in…).

Even with my second operation, at age 7, things were not too bad.  Yes, I had a god almighty shock when I was allowed to look in the mirror for the first time, my nice flat fat scar had been replaced with an angry, longer, thinner, raised and red scar with black scab sitting on the top of it under my neck.  The thread of the black spidery stitches that was poking through the wound dressing at the top of my thigh were an indication that something hadn’t gone quite right with the attaching/removal of the heart lung bypass  (which was done through the artery running through your groin when you were a child) left me feeling anxious – but that is another story I may tell you – the day they took those stitches out of that wound.

The biggest change from my second operation was the fact that I was stopped from doing PE at school at the age of 9.  Up until that point, I had been managing my ‘condition’ very well, I had no idea that I would need another operation until rumblings of rumours appeared in my early teens.  As far as I was concerned as long as I didn’t over-tire or over-exert myself, all was cool and I could do what I liked, until I crossed the path of a middle school  PE teacher who in one-act of total disempowerment, robbed me of the confidence of managing my own condition.  So there it was, I was stopped from doing PE, something that would stay with me until I moved up to the 6th form of my comprehensive where nobody did PE and I didn’t stick out as the weird one.

I had my last OHS at 16, this was the troublesome one.  It was a major inconvenience on my part, to have my dad read me my O-Level results, out to me down the phone while I was in hospital, (B for Drama – Yay! C for English – Yay! A fail for Maths…. well, we knew that one was coming….) My only aim was to get in and out as quick as possible, I was dancing in a show in October I would need be back at rehearsals by September at the latest….. This time during my stay in hospital I was more aware of what was going on around me and I went into full on entertainer mode, I had a quip and a joke for everyone, I had taught myself to read the charts at the bottom of my bed, and the print outs of the ECG machine, looking back I can see it was a coping mechanism, behind it I was very frightened, I remember a few sleepless nights fretting about not waking up after the op.  Sometimes, in the nights before the surgery, I would get up and wander about the wards and corridors for a bit, there’s something expectant about a hospital ward at night, it’s like it’s not really real, everyone is sleeping but everyone is waiting in that sleep, waiting for something to happen, to feel well again, for a new heart, to stop being sick, to leave…

Anyway there were no hitches with the surgery itself, in fact it went better than planned and the valve was saved and not replaced, (you can read about what was done here) the only hitch was that I was not transfused with enough blood after the op and had to experience a blood transfusion through the night, 48 hours after leaving the Intensive Care ward – a very interesting and shouty experience!

When I was finally discharged I remember very proudly walking out of the hospital in the tiniest of shorts, a top I’d made from sewing four dish cloths together and…… ahem…. to my shame…. a pair of white stilettos……. C’mon it WAS the 80’s don’t you know….!!!

So you may be thinking… what are the secondaries…..???  Well they didn’t turn up until much, much later….

I was 22 when my boyfriend at the time told me.  “You’ve got a curve in your spine, it’s amazing.”   SORRY WHAT?????  A few crazy postures with a hand mirror and a wall mounted mirror later I felt that awful feeling of dread that he was right.  I went to my doctor, and it was true,  it was so clear to see and suddenly everything clicked into place.  The awful spasms of pain that would hit my back and render me helpless and breathless on the bathroom floor, a feeling that my diaphragm was being crushed, that someone had put a steel band around my solar plexus and was pulling it tighter and tighter, the weakness I felt in my left arm and of course why some clothes looked bloody awful on me now matter how straight I held myself, I realise now that I was actually not standing straight at all but curving into a sort of odd ‘s’ shape.  (I still do this now, and often catch myself with my hip jutting out, or leaning over to the right when sitting). My curve (scoliosis) looks like this:

Wish my bottom looked as peachy as hers... ;)

Wish my bottom looked as peachy as hers… 😉

It’s not as bad as this picture, but it was noticeable!  I started paying for remedial massage to soften the humpy backness I had and to try to bring my shoulder blades into some sort of alignment, I also went back to the hospital to see if anything was related to my last operation as it was also noted that my collar bones were (and still are) so out of line it was unbelievable. At first the hospital denied any involvement stating that Scoliosis could appear at any age and it was something I probably always had, it wasn’t until X-rays were compared of my chest before and after the operation that they admitted that maybe they hadn’t closed my ribcage properly and it had somehow slipped pulling everything out of kilter and also as it had been left for so long, two of my vertebrae had fused together.  I would be 2″ taller if this hadn’t had happened. (Just imagine, I’d be 5’9 1/2″  – supermodel material 😉  and this is why I always think I’m taller than I actually am – that’s my excuse anyway…) They gave me a course of physiotherapy, and  it wasn’t until my physiotherapist in Devon (I had moved to Devon at this point to study for a degree), who had also gone through open heart surgery, told me that it was the fact that I had been laid out badly after the operation and this was a common problem that they were beginning to see in people who had gone through OHS.  Again things clicked in place, for a few months after my third surgery, I could not without considerable pain in my neck and back turn my head to the left, but after a few months this stopped being such a problem.  I’m only now just wondering if this was the start of my spine and rib cage being pulled into its new curvy position.

And it goes on! Last year I was so very close to enrolling and spending almost all of my redundancy money in an intensive 5 week course in London for people with Scoliosis.  I was getting frustrated with not being able to sing anymore, my breath control was diabolical, I really noticed it when acting and dancing, I couldn’t project as well as I could, I felt I couldn’t get enough air into my lungs, at first I thought it was heart related, at second I thought it could be Scoliosis related….. A fellow bellydancer has a scoliosis, hers is different to mine, but she very kindly passed on to me the details of her physiotherapist and I booked an appointment.

I met with the physiotherapist and gave her a brief history of (briefer than what is written above!!) my heart ‘condition‘ (condition, really, it makes me sound like a pregnant woman from the 60’s…) and the first thing she did was measure how much my ribcage expanded when I breathed in…… Shockingly and very surprisingly it expands not even half of what a grown adults ribcage should expand!!  I was gob smacked.  Armed with this piece of information I talked to my cardiologist about it at our next appointment.  She “hmmmed” and then said…. “But of course, anyone who has had open heart surgery will have a rib cage that doesn’t expand as much as ‘normal‘ person’s does, it’s a side effect of the surgery, of having your rib cage open and closed!”  She also went on to tell me that as my chest had been open and closed so many times my lungs were naturally smaller than someone’s who hadn’t had their chest cavity excavated.   I was gobsmacked…. When was this discovered and when was I going to be told this??? If this was a well-known fact, why didn’t anybody tell me??  Y’know if they had told me, I may have kept up the voice classes and workshops I used to attend, because looking  back, I think that was the only thing that kept me breathing, that kept my rib cage expanding as much as it did, that kept me ticking over, and the fact that when I was doing all this regularly, I bloody marvel at how GOOD my projection was, how good my voice control was for someone who had a half the lung capacity of everyone else…… bugger…..

So at the age of 44 years I discovered that having OHS can shorten your lung capacity, give you tiny lungs and shorten your rib cage expansion….. funny how you learn something new about your heart condition as you get older….

But it’s not just the physical things that are secondary to the main Open Heart Surgery thing, it’s the scars, the tests they do before they decide to operate, the angiograms, the exercise tests, the MRI scans, having radioactive dye shot through your veins, the trooping forwards and back from the hospital, the waiting, the lost notes, the realisation that you’re responsible for other people, that getting better or worse effects them and how to deal with that and all the other emotional stuff that I’m leaving out of this post, the dealing with the fact that you’ve consented for your body to be put through the equivalent of a high-speed road traffic accident and that you’ve been technically ‘dead’ three times in your life makes the film ‘Flatliners’ all the more laughable….

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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:

Image

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/Patient.co.uk/NHS 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.

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.