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….

Sometimes it’s not all about the CHD…..

There was a time roughly about 10years ago when I was thin.

Painfully and strangely thin.  I remember looking in the mirror and being able to see my chest bones and thinking this really isn’t right.

It wasn’t deliberate, I was eating, probably not enough, I agree, but I certainly wasn’t deliberately starving myself. Honest.  I was very, very stressed at the time, lots of things were overwhelming me, life had got the upper hand and for the first time I didn’t know what to do.

It wasn’t just the weight loss there were other symptoms too.

As things stabilised so did my weight and I didn’t think anything of it.  Until it started tipping the other way and then I felt that I had been hit over the head with a brick.

Around 4 years ago, there were times I would get up to go to work, make it to the bathroom door and just turn around and crawl back under the duvet. Putting one foot in front of the other was painful, not painful in an emotional way, but painful in a physical way. It was how I would imagine walking on knives to be like. Days when I got up ‘normally’ I would still spend 10minutes on the side of the bed working my feet, rubbing and stretching them believing that many years of dance, stupid shoes and age were catching up on me.

My housemate mentioned that I was taking an awful lot of time off work and was surprised that I didn’t have HR on my back.  Up until then I hadn’t realised I was calling in sick or turning up late quite so regularly.

Cold I was so bloody cold, one summer I didn’t even get to wear any summer clothes, its was a typically British summer but pleasant enough outside, but nope, I was wearing my winter jumper and sometimes a scarf as well!! It was around this time that I watched a chat show with Robin Williams talking about his OHS and he mentioned that one of his symptoms before he had surgery was that he felt he was winding down like a like clockwork toy….

Oh.  Me too, Robin. Me too. Time to tell the Cardiologist.

So I did.  She took my tiredness very seriously. So began six months or so of various tests, at one point she speculated that maybe another hole had opened up in my heart, the terror that idea struck in me was unfathomable. The test is quite funny, they push tiny air bubbles into your blood stream then make you hold your nose and blow down it while they are monitoring the flow of blood through  your heart to see if the bubbles actually move through the heart chambers as they should or whether they skip over middle of the heart and end up on the other side thus proving that there is a hole.

No hole.  Phew!

Other tests, blood tests, the dreaded bicycle stress test, ECG, Echocardiogram, and finally an Angiogram which is a story in itself I may tell one day.

The only results that had changed told them that the leak in my Aortic Valve was worse than they thought but not bad enough to warrant the symptoms I was presenting.

So I went home, struggled with my weight gain which was worsening, damaging my confidence to dance (which I was still trying to do), my mood was dismal, and I felt I didn’t know my own body at all. All my doctor at the time would say was ‘its your age’ which made me feel I was complaining about nothing.

I moved house signed on with a new doctor had all the blood tests that new surgeries put on you when they find out you have a CHD and I was called in.

The Dr. read me a list out asking me if I suffered with any of these symptoms.

  • Changes in the menstrual cycle. – Boy, from being the regular as clockwork woman to I don’t even have a fucking clue about my own fertility or body anymore. Check.
  • Dry hair and hair loss. – My housemate often complained loudly about the amount of my hair she found in the shower, um sorry yes that is me. Check.
  • Dry skin. – Thought I was getting old. Check.
  • Fatigue. – Check, check and check again!
  • Greater sensitivity to cold. – Fancy spending summer in your winter woolies and moaning about how cold it is to your friend in a T-shirt. Check
  • Slow heart rate. – Thought it was the CHD. Check.
  • Unexplained weight gain. – Sob. Check.
  • Muscle/joint pain. – Check.
  • Puffy body/face. – Check.

You have, he told me, a underactive Thyroid gland (Hypothyroidism) and it had probably been underactive for a good few years.

Oh. It wasn’t anything, anything, anything to do with having a Congenital Heart Problem.

So, I’ve had Hypothyroidism for two years now. It is incredibly common.

The thyroid gland in the neck is important for regulating the body’s metabolism. With an underactive thyroid the gland does not make enough of the thyroid hormone called thyroxine. So I now take Levothyroxine to build up the thyroxine levels.

The Dr. even suggested that when I was painfully thin, my thyroid was overactive as the anxiety and insomnia and weight loss were all symptoms of that, and some thyroids do see-saw from one extreme to the other.

My feet have stopped hurting in the morning, though some days I have muscle/joint pain –  but it’s bearable, I hardly have days were I can’t get out of bed, I am slowly beginning to feel more at home in my own body.

How do I feel? I feel less crazy…. 😉  I still don’t like the weight gain or my puffy face.  Having Hypothyroidism means its is very, very difficult to lose the weight once it’s there.  I hate it to tell you the truth, it will never sit well with me.

But on the plus side I get all my prescriptions free so all the medication that I am on for the CHD is free, which is a silver lining if you remember my ranty blog about paying for my prescriptions.

Funny, it never even entered my head that I could get another illness, I had a CHD I couldn’t possibly get ill from anything else. But there you have it.  I can.  You can.  It’s not all about the CHD.

Put The Needle on the The Record….

I’ve had a lot of blood tests recently.  A lot.  You think by now I would have got used to them.  Nah… I still hate them, I still get wound up by them and I still would rather not have one thank you.

But being on the meds that I am, it requires me to have regular blood tests to check that my kidneys are still functioning well and coping with the extra work that the meds are putting on them.

I’ve also signed up to a new GP Practice recently, and of course with my medical history I get a call and have all these wonderful appointments made for me to check everything out, blood pressure, weight, pulse, meds, blood, kidneys, etc, etc, etc.  I should be grateful really that they are taking seriously, my heart issues – (As an aside, I like the word ‘issue’, it’s quite weighty and not so negative as ‘problems’, it also gives hope, hope that the issue can be overcome or lived with positively).

Anyway, I am grateful that they are taking my heart issues seriously and it was during this new patient review that I had a blood test and they found out I was borderline anemic.

I probably have been for some time as my eating habits over the last 6 months were quite appalling, living off takeaways and crisps. I’ve been a pescetarian for 26 years and I guess it all adds up that my iron levels are a little low.  So it was suggested that I take an over the counter iron supplement.  With the other meds I take I have to take the iron supplement in the evening and then eat a tomato…. I kid you not, the pharmacist recommended eating a tomato or a satsuma with the supplement to help my body absorb the iron.  I’ve done weirder things in the name of keeping myself healthy so popping a cherry tomato in my mouth every evening isn’t too much bother.

But blood tests do bother me.  Not as much as they used to, when I was younger, but I still feel the knot in my stomach every time I need one.  Right up until recently I would shake and cry.  It’s not just blood tests, any form of injection would yield the same result.  How embarrassing it has been, being the youngest person in the flu jab clinic in full view of the other patients, sobbing my eyes out while a helpful doctor or nurse injects me with flu vaccine and you want to know the stupid thing – they really didn’t hurt, just a slight feeling of an ache in the crux of my arm.

The first blood test I remember was before my second operation. I was 6years old.  I remember having to squeeze a sponge to prepare the vein and then watching the needle go into my arm and watching the blood go up into the syringe.  It was fascinating. Everyone commented on how brave I was, but I just remember watching the purple-red (very deoxygenated blood, I was quite ill then) swirl into the plastic syringe thinking “Wow! That comes from me” and “Deoxygenated blood is blue!”

So what happened?  Why from that fascinated 6year old did I go to quivering, snotting hysterical wreck. It was an incident with a very gruff doctor, who had little experience with children, who had to take my blood the day I arrived at Papworth, the day I found out that I was having an operation.

His technique was pretty brutal, I was quite happy at first, held my arm out obediently thinking I would find it interesting but something was not right and the pain was unbelievable for a child to withstand.  He pulled out the needle and then stuck it in again and he had to take a lot of blood, much more than I had previously given.  I buckled. I kicked and screamed and yelled and he had the nerve to tell my mother off for not controlling me! In the end the only way he could take it was with me straddled over my mother’s lap, her holding me down and him grabbing my arm making it rigid and therefore almost impossible to take blood without bruising and without pain.

After that.  I freaked out every time a doctor or a nurse came round to take blood or give me an injection.  I refused pain relief after the operation because the higher doses came as injections, I was more terrified of the needles than the pain I was in and made do with the medicine.

So yes, many a time I have sat silently with tears rolling down my face as blood is taken or an injection given, and I’ve felt so stupid as I’ve made it become this huge fuss and then I felt even more stupid as I realised while the procedure was happening that, actually, it didn’t hurt that much.

How do I do cope now.  I’m up front with anyone who is going to jab me with a needle, I explain that I can’t see the needle or the syringe before the deed is done.  I make a point of looking the person in the eye (just incase I accidentally see the syringe on the table) and explain that as they are preparing my arm etc I have to look at the ceiling.  I then use relaxation techniques – mainly I concentrate on my breath, breathing in and slowly breathing out when I feel the needle go in, I also make an effort to relax my arm.

Techniques for taking blood have also changed in the last 40 years, I was surprised a few years ago that the arm is placed downwards on a pillow rather than on a table, using gravity I suppose, but it’s much easier to relax the arm this way and in hospitals they have special chairs that hold your arm in the correct position much easier.

So hows the iron count?  Fine, latest results back today are all normal and no action needed, worth taking a supplement and eating a tomato every night for I think!

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….

 

 

Goodbyes

How do you feel about goodbyes? Relieved, sad, couldn’t give a toss. It’s something that I’ve never really thought about but I do know I have been totally shit at them. I probably still am. Is there such a thing as a ‘good’ goodbye??

The past week I’ve done quite a few goodbyes, good-bye Therapy Foundation Course, goodbye play, goodbye way of life for just under a year, goodbye fellow travellers on the journey of the foundation course.

When I think about it, my last few real goodbyes have left me feeling pretty shit about myself, as I if there was something wrong me, like I was some kind of unlovable monster with two heads that was really undeserving of any kind of care at all.

Last week, I said goodbye to my fellow students on the foundation course all I can say was that the tutors prepared us extremely well. How? We talked about it! We talked about the fact that today was the day we were going to say goodbye. There was lots of visualisation, lots of letting go, almost ceremonial actions. The writing of notes to each member of the group passing them to each other in silence, reading what each one of us had written about the other and expressing an instant reaction to that. Nothing was hidden or swept under the carpet. Only a few of us will be moving on to the next stage of the course, so for a lot of us, it was a final goodbye as we all came from different parts of the southwest!

I left not feeling like shit, I left not feeling like I had shut down and become cold to the fact that this was the last time I would be seeing some of these people, of going through the motions devoid of allowing myself to feel anything except a the burden of responsibility that its my fault they don’t like me enough to keep in contact….

I felt, celebrated, loved, emotional, so bloody emotional and we were allowed to feel those things until the natural time came to say goodbye – (for some of us it was midnight in a grimy club after beer had been consumed…. hardcore til the end…. 😉 )

It got me thinking about the first time I encountered the finality of goodbye….

I don’t remember it of course I was one and half years old, when the porters came to take me down to theatre for my first open heart surgery I was bouncing around the bed laughing my head off. The nurse couldnt’ believe that I had already had my pre-med and it became very clear that it was going to take them more than the average dose to knock me out…. So they gave me a bigger dose and that’s when I went limp. As I say I don’t remember this story, this is my mother’s story and I cannot, cannot, imagine how horrific it was for her, at what happened next.

They had to peel me off her as she held it together. They had to uncurl my arms from around her neck, and unclasp my fingers from her hair and put me on the trolley to take me to surgery. No goodbye. As I say mentally I do not remember that goodbye, but I think the conscious collective and even my own body may think otherwise….

So for me, the first time I came across the whole meaning of goodbye, the whole finality of goodbye was when I was 6years old at my second operation. I was still trying to get to grips with what was happening to me as I found myself being wheeled down to theatre, watching the ceiling of the corridor slide over my view, if I titled my head back and rolled my eyes upwards I could see the upside down faces of my mum and dad as they followed the trolley down. I did not realise that they would not be coming in with me to the theatre itself……the goodbye was rushed, I had cottoned on pretty quickly that this were I was meant to be brave and that what happened here, how I was coping with this goodbye was crucial for them getting through the next 4 hours.

Hindsight is a funny thing isn’t it? I came back from that goodbye sore, groggy, thirsty and wired up to machines. I had lost four and half hours of my life and I didn’t know where… but I had come back. I wonder now if unconsciously we had all slammed into that goodbye as if I always was coming back, that what was going on in those 4 1/2 hours of unconsciousness was just not important. I was back and that was main thing. Goodbye shmuwdbye, I’ll always come back. Maybe if we’d talked it through, I wouldn’t be so shit at goodbyes now. John Bowlby would call it an abandonment issue… I’ll leave that up to you to research and make your mind up.

Anyhoo…. I also worked on a show last week, I staged managed a show calling the cues to lights, sounds and visual effects. The play was called Pornography, it was about the week leading up to the 7/7 bombings in London, the week of Live8, winning the Olympic bid… it was a very powerful, emotive production. To me the play was about grief, I watched the play nearly every night in my job as SM, each night a different character spoke to me about their grief, the whole play spoke about the power of the not goodbye, I cried every night at the end of the play.

So yes, goodbye course and fellow students, goodbye production and wonderful hardworking talented cast, goodbye words of an amazing play, goodbye vision of the director and production team, I have been allowed to sit with all these goodbyes and feel what I feel and I feel ok. I’m not a crap person, I’m not shit at goodbye at all. You’re great, I’m great but our time is at an end, time to go and good go with you.

Until next the next blog update of course…. 😉

Losing Touch

Well, it’s been almost two months since my last post!  2 months, it’s the longest time I’ve not written since I started my blog!

I’ve not been ignoring it though, I have been quietly mulling over something and just needed the right angle from which to write, I was just thinking how out of touch with my blog I was being and, well, yep, that was the angle.

I guess for me, the last few weeks, I’ve really lost touch with myself as well.  I was on half term with my course, I had handed my essay in and it was handed back to me with great feedback. I applied for the MA in Psychotherapy to carry on with my training and my tutor gave me a great reference, I got an interview.  But something had changed.  Somehow lethargy and complacency had stepped in and taken over.  I stopped reading, I started with some of the other students to really talk to each other about stuff instead of practicing our skills in the correct way in the unsupervised training sessions.  I wasn’t feeling ‘it’ anymore.

I went to my interview, I got in.  So why wasn’t I jumping around the room with joy when I received the letter of acceptance like I did when I got accepted onto the current Foundation Course? Why did I feel weirded out, along with a feeling of dread and a ball of anxiety forming in my stomach?  I had already left.  In my head, I made my peace with not being accepted and silently had said goodbye to my fellow students and was ready to go back to full-time work and back to the life that I couldn’t wait to get away from almost a year ago.

I can see now that I was getting ready to take the easy option.  Leave and be done with it.

And to an extent I am still feeling slightly ‘wooly’ and fearful about the whole next year.  But a few things from the world of synchronicity and, if you are a fan of the philosopher Karl Jung – ‘The Collective Consciousness’ was telling me that actually this is the right path for me.  If you don’t read Jung or believe in ‘The Collective Consciousness’ that’s cool too.

I  re-read an email that was sent to me a while ago.   It was from a Psychology student who also volunteers at the Somerville Foundation with me.  We’ve never met but I took part in her final research project. The email was her write-up of her investigation into the need for a provision of emotional/mental health support for those who have and have contact with those with a CHD.  It makes fascinating reading.  The title “At some point, something is going to break”: Discovering the experiences of adults with congenital heart disease, sums it perfectly for me!  At one point I am going to go into this research and write a proper literary review of it, it’s so important!

It is a comprehensive and intelligent paper on how often those adults with a CHD often feel emotionally vulnerable, a need to be seen to be strong and sorted, and a fear that they will be seen as different.  I really wish I could link to it, or cut and paste it all here for you to read as it is really an important piece of research and evidence into what so many CHD-ers are feeling – a worry that something will break, that our bodies have taken on a physical, emotional and mental assault and basically we get tired sometimes of dealing with that trauma, speaking from experience, it is a trauma, believe me…

Within my volunteering work in the last week or so, I’ve spoken to many people enquiring about a therapeutic/counselling service for their needs.

Then an a friend who I haven’t really spoken to for ages, out of the blue, emailed me explaining that she had heard of a placement going for a trainee therapist and would I be interested!

Jung’s theory really was alive and kicking – ‘The Collective Consciousness’ –  which I’m beginning to slightly soften too, was telling me that I am on the right path, that what I am doing is of value and hopefully when I’m qualified people will begin to take me seriously when I say there is a need for this type of service to those affected and effected by CHD.

So I am on the right path, the next year is not going to be easy, there are many things I want to do beside studying and training.  I’d like to start earning again, I’m going to have to be organised and sensible (yawn!) and really listen to myself and surroundings instead of developing my Ebay habit even more than what it already is.  But If I keep in touch with myself, I’m sure I can do it.

The Heart M.O.T

I had my 8 monthly check up the other week.  I have always likened it to my car being taken in for it’s MOT.  Even when I was a child it was known as MOT time. Of course the time in between MOTs varies to how well I’m doing.  A few years ago I was going up nearly every month, now it’s reached a nice plateau of every 8 months, I’m hoping I can get it back to an annual MOT very soon.

I am very lucky in the fact that I have been able to stay with the cardiac unit where I grew up.  They’ve known me since I was a baby, and yes there was a transitional stage where I was no longer a child and they didn’t know where to put me, but luckily enough GUCH (Grown Up Congenital Heart) clinics had started up, due to the fact there were more of us surviving into adult hood.  So,  I’ve been with my present cardiologist for 25 years!

Yes, it is a bit of a drag having to travel up to East Anglia, I have to schedule work holidays to fit it in, but it’s lovely to catch up with family and friends as well while I’m there.

So I went to my appointment with no expectations.  I arrive and have the usual tests; ECHO Cardiogram – I remember when these machines were first used for heart patients, I was in my teens, the picture quality was even more ropey than it is now, but if you imagine a scan on an unborn baby that’s what it looks like.  Except it’s your beating heart on the TV screen and not a baby. It works in the same way too, bouncing little sonic waves off your heart to get the picture, it’s a sonogram of the heart.

It can provide a wealth of information, including the size and shape of the heart, pumping capacity, and can show any tissue damage.   As well as creating an ultrasound images of heart structures, but it can also produce accurate assessment of the blood flowing through the heart, using pulsed or a continuous wave of ultrasound. This allows assessment of both normal and abnormal blood flow through the heart. To me it sounds like someone is slapping a very wet towel around by my head and I can make no sense of it apart from a little fantasy of it being used in the end credits to Dr. Who (remember in the 70/80’s that Schhshshgfthghshsoooso sound at the end of the credit music for Dr. Who – that’s what it sounds like…. )

The position you have to lie can be quite uncomfortable but the staff there do the best they can, I’ve had the same woman do my scans for well over two decades now and I’m sure she must be up for retirement soon, but she’s lovely, she knows me and knows how to get the perfect ‘picture’ of my heart with its chambers and valves.

The little ‘pen’ used to roll over your chest to take the pictures along with the cold jelly gunk on your chest (fnar fnar!!) 😉   Yes, I said ‘jelly’ and ‘gunk’  and you can smirk….  I know all the jokes about having cold gunk on my chest thank you, I think I wrote some of them…..

Anyway, the pressure that needs to be put on the chest to get the best picture can make me feel quite nauseous, but I can concentrate on the screen and marvel at my beating heart – I can just about recognise the 4 chambers of it and the flappy bits of my valves in motion.  When I was younger I would perversely try to stop my heart from beating by just willing it to stop and holding my breath, just to see what it would look like…. I don’t do that now, I’ve learned that it will beat beyond my willing it to stop and that my control freakery has met its match… the beating heart is a pretty wonderous thing.

Next up was an ECG Electrocardiogram.  More cold gunk on the chest along with the wrists and ankles and little electrodes are attached to the skin.  The ECG is used to measure the heart’s electrical conduction system, I think I mentioned earlier in my blog (here) that they think I have a slight heart block, that is, the electrical conductivity of my heart is a bit mis-wired due to the surgery I’ve had.  This used to be a torturous test when I was a kid, I would have to lie very, very still or the electrodes, that were little suckers at that time, would keep falling off if I moved or laughed, and I would always, always start to laugh during this test, at nothing.  So great big swathes of print-out would have to be binned as the electrodes would pick up the movement in my body.  Today, I still get the urge to laugh at nothing, but everything is so advanced now it doesn’t matter if I move.

In fact, I had a bit of a chat with the technician who was doing the ECG test.  She told me how feared my cardiologist was amongst the nurses and technicians in the cardiology clinic.  “You just have to hear her high heels clicking down the corridor and you get really tense!” she confided.  “She’s a bit of a dragon…..”  I just smiled.  She’s right, I have seen her shout down the phone and throw it down in disgust when my records got lost, but I have also seen her praise her team in theatre when she was performing an angiogram on me, especially thanking the theatre nurse who looked after me, and who had to hold her fist to my groin applying pressure for half an hour after the procedure so I didn’t lose too much blood.  I find the click of her heels down the corridor re-assuring, she’s an amazing woman, she knows what she wants for her patients, she can be critical of student cardiologists whom she mentors but only because she wants them to do well, she gives 100% every time and she expects everyone around her to do the same. I like her and we’ve had some very frank conversations over the years.

But I think this one was the most real and probably the most emotional. She is reading the tests results that I have had that afternoon, we have a brief catch up on how my health has been in the last 8 months – really well – something to do with not working I think 😉  I tell her my plans to become a counsellor for cardiac patients and all about my course and she smiles and says “Yes, I think you’ll be very good at that, at the empathy and understanding.”  “I think there is a real need for it.” I reply, and then I say something that I never thought I would ever say to her… “From my own experience, it’s not that I’m ungrateful for all that you have done for me, but my own heart ‘condition’ and the surgery has been the root of a few of my problems….” and our eyes meet and I can see that I have touched her, I have made her think and I think I may, for a second, have made her sad.

She finishes by listening to my heart, taking my blood pressure – different in each arm! But thats ‘cos of the many angiograms on my right arm as a child. Mentioning my weight… I know, I know, I KNOW!!!! Hell! I’m active 3 times a week, I’ve even started running!  She gives me a picture of my ECG to carry around with me and makes me take a picture of it with my phone, just in case my heart goes crazy and A&E need to see my normal, abnormal heart rhythm. I leave with an appointment to see her in December.

So here it is, if you can read it, please let me know as I have long forgotten how to…. enjoy the ‘art‘ my heart makes….

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