Growing older with a congenital heart defect: a seminar

Last Saturday I and about 25 other people with congenital heart defects attended a half-day seminar about getting older with a congenital heart defect, run by the Somerville Foundation. It was held in the illustrious surroundings of South Kensington, at Imperial College, right near the museums. I hadn’t been to that area for years, and it wasn’t quite how I remember it – it was in fact much nicer and easier to navigate. Perhaps there have been improvements – it seemed a lot more pedestrianised, which was good, and I have now found the nearest bus stops – also right next to the Royal Albert Hall. But I digress.

Much needed coffee

The seminar itself didn’t include anything unexpected, although it was still useful – it’s always a good thing to be able to talk to people in the same sorts of situations to you, if nothing else. The main points were:

  • People with congenital heart defects are (obviously) still subject to all the ‘normal’ health problems older people can expect to encounter. I think this is rather unfair, but there we are.
  • We (people with CHDs) need to be mindful that we are also more likely to develop certain conditions as we get older (e.g. type 2 diabetes, kidney and liver problems) so we need to try to take steps to mitigate this (i.e. eat healthily and exercise as much as we can).
  • We really need to make sure we have at least a summary of our medical notes on our person at all times in case of emergency or other hospital/doctors visits. Also, we need to try as much as possible to encourage any non-CHD specialist medics to liaise with our CHD medics otherwise there is a risk that they might do more harm than good. I’ve been very fortunate (so far) in that most non-CHD medics I’ve had contact with have been really good at liaising with the Brompton Hospital (where I have my CHD treatment/clinic visits), especially during my pregnancy and after B’s birth. However, some people have not been so lucky. We talked about the idea of advocates, which I think is a great idea, particularly as we get older and less able to fend for ourselves. But I guess the question is, who would do this? It might be a role for the Somerville Foundation, but they are a very small charity so I’m not sure how feasible this would actually be.
  • It seems that most people in the room had had (or were having) some issues (to put it mildly) with NHS administration. This is obviously a worry as we will probably need to access NHS services more and more as we get older. NB: I love the NHS but there are clearly issues that could be resolved fairly easily (she says) with a bit of forethought and patient-focussed systems/processes.

After the seminar we went to the V&A for (a very late) lunch, which was expensive but delicious. It was probably worth the money to sit in such beautiful surroundings (but I can only say this because I’m working full time and a lot of people with CHDs are not able to do this).

Dining room – Victoria & Albert Museum
William Morris Window, V&A restaurant
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Exercise test

I had an exercise test  (also known as a stress test) on Thursday. I’ve been dreading it for a while, mainly because I was worried about coordinating myself on the treadmill. I’m not usually very good with moving walkways – escalators are a no no – because of my issues with balance/vertigo. But I had to have the test. I was hooked up (or rather clipped up) to the ECG holter monitor, and then I was supposed to do a lung function test before the exercise test itself, but the mouthpiece you’re supposed to blow into was too big to fit in my mouth! I have a very small mouth, so small that the dentist has to use the children’s x-ray plates when he takes x-rays of my teeth. They didn’t have child-sized mouthpieces for the lung function machine (although presumably there must be some somewhere in the hospital?) so my lung function was not tested.

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Photo by Valeriia Bugaiova on Unsplash

So, on to the treadmill. This, you will not be surprised to learn, was not as bad as I’d expected in terms of coordinating myself. I found that the key was to not look at the treadmill but instead look at the ‘horizon’, in this case the wall. When I got on to the treadmill I had my blood pressure taken and an oxygen meter was put on one of my fingers to measure my oxygen saturation levels during the test. Oh, I forgot, the face mask – this was not much fun although it was interesting to see the new design of the masks. They are no longer rubbery and held on with elastic straps, but made up of a plastic bit to breathe through and the rest is material that wraps round your head. It was more like an old-fashioned gas mask than anything else. Not good for the claustrophobic, but then no masks are. At least it didn’t have that horrible smell the old masks had. Anyway, the point of the mask was to monitor my breathing during the test. Also during the test, my blood pressure was taken every two minutes. The technician doing this had trouble hearing my heart sounds, so it took her a few attempts to take it. This is normal for me – I feel sorry for the technicians/nurses/doctors because they seem to think it’s their fault, but no, it’s just me. And then I apologise for myself a bit.

I managed to get to stage three of the test. Each stage is three minutes long. The first stage is a normal walking pace, the second is a bit faster and the angle of the treadmill is adjusted so you’re on a slight incline, then the third stage is a brisk walk and a steeper incline…and I guess the fourth stage is brisker/running and steeper but I didn’t get that far. I think I got about a minute into the third stage. Then I had to stop and I was able to sit down and have a drink of water while my blood pressure was taken again and my oxygen levels were checked and probably some other things I didn’t know were happening.

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Me running – in my dreams. Photo by Sebastian Staines on Unsplash

After the test, the technician went to find the pacemaker technicians to see if they could see me – she didn’t explain why. It turned out they could see me if I waited a bit, so I went back to the waiting room and sat and listened to an amusing very upper-middle-class woman and her elderly mother in conversation. Then it was my turn to see the pacing technicians and they said that during the last part of the test, when my heart was working harder, it had gone into a “Wenckebach rhythm”  which is where the lower chambers of the heart expand and contract at a different (slower) rate to the top two chambers. This can cause shortness of breath in some people (although some people are asymptomatic).

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Karel Frederik Wenckebach By unknown – textbook, Public Domain, Link

The irony of it was/is that it is actually my pacemaker that caused my heart to do this, because of how it is set up – one of the technicians did explain how this happens but I’m afraid I didn’t really understand it and can’t remember what he said. Anyway, they have changed the settings on my pacemaker to see if this makes me feel any better, but there are disadvantages to doing this. (1) the pacemaker will be pacing my heart more so my heart will (over time) become more reliant on it – this can actually make heart failure worse because the heart gets ‘lazy’ and weaker – just like a person who doesn’t exercise. (2) The pacemaker’s battery will run out faster because it’s working harder. I’m going back to the hospital in August so I will report back, and if the new settings haven’t made any noticeable difference they will change the settings back to the old ones.

Lack

I have always felt this, this lack of belonging.
It meant things like:
I wasn’t homesick.
I have thought this a failing and a lack of humanity in me,
but I just don’t have that need for people.
Cold person.

I don’t
feel like I own anything.
Jack of all trades, a master of none:
I know lots about a lot of things, but.
This I also consider a failing.

I stick out –
I’m the one spoiling the family photo (I am),
the one with the different opinion, the one who doesn’t want to do the thing everyone else is doing.

As for belonging in my own skin:
no, never that.
Your body becomes your enemy –
something other.
My heart is doing this weird thing,
my back is wonky,
my ear is broken,
my neuros are diverse.
The me is separate to these things, although it is subject to them.

Something in me wants to be unleashed:
The writer, the singer, that musician, the seer, the reformer –
but it is bound,
not only in this body, also by other people:
what they say/have said, might think, have done.
The walls between me and them.
I hold my breath when I write.

The hearts of small children are delicate organs

“But the hearts of small children are delicate organs. A cruel beginning in this world can twist them into curious shapes. The heart of a hurt child can shrink so that forever afterward it is hard and pitted as the seed of a peach. Or again, the heart of such a child may fester and swell until it is a misery to carry within the body, easily chafed and hurt by the most ordinary things.”

― Carson McCullers, The Ballad of the Sad Café and Other Stories

Please don’t call me a hero

I’m re-blogging this post from last year because I found the post that inspired me to write it (I couldn’t think of it at the time for some reason): this post by Sarah at The Adventures of Ernie Bufflo: https://erniebufflo.com/2014/01/29/my-child-with-a-disability-is-not-my-hero/ – so please read this before you read mine! She is a great writer and expresses what I want to say (although from a different perspective) much better than I can!

The shape of my heart

This is a picture of a picture of me in our then garden when I was about four:

SAMSUNG CAMERA PICTURES

In case you didn’t know, I hate having my photo taken and I almost never wear make up. A few weeks ago I decided it would be a good idea to volunteer to have my picture taken for the Somerville Foundation’s second Scarred for Life exhibition. This involved having my photo taken and wearing make up…and having my hair cut (a bit) and straightened (which I actually like). I was nervous about the process of having my photo taken, but it wasn’t so bad. I didn’t really feel like ‘normal me’ because my hair looked so different, so I didn’t feel like I wanted to hide like I usually do when face to face with a camera. I did, however, find it more of an emotional experience than I expected. I had…

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“…a vital expression of the organism…”

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The above is printed in the front of Migraine, by Oliver Sacks. I’m reading this book for the second time. The first time I read it I was in my late? teenage years (a long time ago), and I remember that I actually started having a migraine while I was reading it. The irony (or something). It is a most fascinating tome, mainly because migraines are fascinating things but also because Sacks writes well and accessibly. But I’m not really planning to write about migraines or even Migraine today. This is really just a little note about the above quotation. I had two thoughts about it when I read it the other day:

1.

Whoever…sees in illness a vital expression of the organism will no longer see it as an enemy…

Both thoughts have to do with my acceptance (or not) of my heart condition. I have seen my heart condition as my enemy, to be fought against. I have not seen it as a “vital expression of [my] organism. But…

2.

…the disease is the creation of the patient…

I don’t think Groddeck means that the patient is inventing the illness; I’m taking this to mean that the illness is ‘just’ a part of the person, in the same way that the person’s walk, speech, facial expressions, etc., are a part of her/him. My heart condition is  a part of me, so (a) in fighting against it I’ve been fighting against myself (very tiring) and (b) I think I have been seeing it as something separate from myself, like an external enemy that might go away if I try hard enough. But it’s not going to go away. [In this week’s counselling session I realised that I’ve been holding on to a fantasy that one day my heart defect would just go away! This probably sounds ridiculous but when I said it I realised it was true, and might go some way to explain the non-acceptance of it.] I need to accept my “creation” as me. I’m not sure I need to like it, but I need to find a way of seeing it in the same way that I see my [trying to think of something I like] handwriting; not as something external to me, but just part of my whole self/person.

Is this making any sense?

 

Turbulent

For various reasons (work-related), I did the Myers-Briggs/16Personalities test again last week. Bizarrely, the results were helpful in explaining to me why I might be feeling this way. I am an INFJ with a side-order of Turbulence. Turbulence is the operative word.

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Turbulence

I think part of the problem is that, for most of my life (I have come to realise), I have been angry about a lot of things I can’t do anything about. As an INFJ (Advocate), I need a cause, and I have many ’causes’ (in my case quite hard-held beliefs/ideals) and I hate injustice. But I, due to a combination of my own weaknesses and The Way Things Are (the society we live in/my own circumstances which are not necessarily under my control) am unable to either progress my causes or right the wrongs I perceive. I may want/need “constant improvement”,  but I don’t get it, least of all from myself.

I started writing this post a few weeks ago, and, since then, as aforementioned, I have been seeing a counsellor. This has been helpful in several ways; one of which is that it has helped me to recognise that my turbulence manifests itself as inwardly fighting with myself about the things about myself and others that I can’t accept. My ‘wrongs’ are not necessarily (only) external factors, but also those things within myself that I don’t like (hate), my many self-perceived defects and failings, physical, mental and emotional.

If I want to become less angry I need to stop fighting and accept the things about myself that I don’t like/want; in particular, I need to accept my heart condition. I was reading the Somerville Foundation Facebook group’s page wall the other day and someone was talking about how they accept their heart condition and that they wouldn’t change anything [about it?]. I was like (in my head), ‘how can you say that? How can you accept something that’s bad and caused you loads of problems and misery etc?’ (or words to that effect). After all, who wouldn’t want to be normal if they could? But of course, as my counsellor continues to gently point out to me, there is no normal.

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Photo by Marcia Clrillo on Flickr (CC BY N-C 2.0)

I don’t know why I can’t do an Elsa and let it go – when I thought about stopping fighting against my heart condition, accepting myself as I am (which is a wider, bigger thing), I cried. I don’t know why – in a way it’s because I’m not sure there is anything else to me; maybe the fight is all I am. It feels like that sometimes -I’m on the defensive, alert – fighting or flying (turns out I’m also a serial avoider…); it’s what takes up my energy – what will I do with it if I accept myself and all my failings?

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Unseen, by Robb North (CC BY 2.0)

In order re-direct the energy formerly used for inner battles, I need to make my differences/defects/failings into something positive, like the heroine of a young adult novel.  I’ve decided to try to do this by writing (so, here we are!) and walking (which I will write more about another time). I don’t know whether this will work or not, but things can’t go on as they are, so it’s worth a try.