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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Daemon voices


Magical, outside of time, 

beautiful and disarmingly divergent

–  a spark plug place that doesn’t fit

into the workaday world

Like the people in it.

(Or at least that’s what they would have you believe).

A little light.

There is nowhere 

else 

where I feel so 

literally connected 

to the place,

enduringly attached,

letter by letter, 

as I read-walk the pavements,

as though

my fingers could merge into the stones.

[They are so soft.]

I want to touch them

as if they are living things.  

The city is a creature;

a sand-coloured cat,

I want to put my face into its fur.

Catching my breath

ruach

has always been one of my favourite 

words

of course it is 

feminine

and all-encompassing:

“a person’s emotional, 

intellectual and 

volitional 

life”

and it is seated in 

the heart

which suits me just fine

“it contains the moral virtues

and the ability to distinguish 

between good and 

evil”

and it means

breath

wind

spirit

soul.

Ghost.

Macaroni cheese day (AKA autism diagnosis day)

[Written just after the day in question – edited July 2019]

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Just looking at this makes me feel hungry. Photo by Hermes Rivera on Unsplash

One Monday at the end of February, I went to Waitrose to do some shopping and have lunch (macaroni cheese – too hot, but delicious) before going to see a clinical psychologist. I asked work to refer me to see someone because I wanted to know whether or not I’m autistic, and it turns out I am. But now I know this (what I suspected all along), I am finding it hard to know what to do with this information – harder than I expected. I thought I would feel like I understood myself now, that I had a group to belong to, that now I know the reason (or maybe combination of reasons) why I am the way I am (as it were) that I would feel better about myself. But really I just feel the same, with the added complication of having to tell people about it. Well, I don’t have to, but it would be a bit weird not to.

I’m not saying it’s not a relief to know – at least to know that I wasn’t wrong, but I feel that it’s just another thing to add to my list of weirdnesses, rather than something positive – oddly, I felt more positive about autism before I was diagnosed with it. Maybe that’s just because I often see myself as a massive ball of weirdness – so how can autism be a positive thing if I have it? Also, you know, what if she just said I’m on the spectrum because my workplace paid her to assess me? I don’t know – I am being paranoid, and goodness knows I’ve been thinking I’m autistic for ages, so it’s not like the diagnosis was a surprise, but still, I’m not feeling how I expected to feel. I am ruffled. I think I need to talk to someone who will understand, but I’m not sure who that is.

The psychologist said if the term was still in use she would have said I have Asperger’s, but as it isn’t she says I am mildly autistic – this just means my intelligence and speech are good, but doesn’t mean that my autism won’t cause me any difficulties, in fact in some situations I might react just as ‘badly’ as people with who are moderately/severely autistic. I guess it just depends on whether or not I’m in a ‘triggering’ situation, one that I find particularly difficult to process sensorily (I think that’s the first time I’ve used that word)

Formal 

by (the use of) the senses; by means of the senses; in relation to or in respect of the senses

to explore the world sensorily

– Collins English Dictionary 

 

 

 

 

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.

Jiggered

Is an alley all as it appears?
Who knows where a vennel might lead?
Will a chare take you home or scare you to your death?
Snooded thieves sneak in snickets, surely?
The gennel and the ginell sound like gentler places,
but the jigger? Not so jolly.
I suspect jiggery-pokery,
and who knows where you’d end up. (Jiggered, perhaps?)

The cousins of the jigger; jaggers,
with unpleasant connotations, should be judiciously avoided,
along with cuts and cuttings (for much the same reason).
The jitty, on the other hand,
may well justify its friendly-sounding name,
but who knows what (or who) may wait twitching in a twichell;
and can anyone really trust somewhere that’s ope, shut and close at the same time?
I think not.

And would you try a twitten?
It might be better not to brave the backway,
and, though the pend and the wynd may look straight, one never quite knows where the next turn will be.
Gulleys, I would say, are perhaps not so greedy for unsuspecting souls, but the 10 foots?
No – too long for a safe short cut.
And as for snickelways,
everyone knows they’re just made up!

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.