This list of words is not exhaustive

Word Art (1)

I made this graphic (using WordArt) because I wanted to see how many positive words I could think of when thinking about my heart defect. So I just made a random list of words that sprang to mind when thinking about it, put them in a heart-shaped word cloud and categorized them using colour. As you can probably tell, the black ones have negative connotations, the blue ones are (sort of) neutral and the red ones have more positive connotations – all according to my subjective viewpoint, of course.

Once I’d finished the word cloud I realised how childish it is: the use of the word ‘tablets’ instead of ‘medication’ (or even medicine); ‘teddy’, ‘pricking’ (this refers to my sternal wires pricking me inside my chest – it happened a lot in my teens/twenties; not so much since the old wires were removed when I had surgery in 2008). You might be wondering why ‘picnics’ is in there. This is because when I was a child we always went to Harefield Hospital for my annual check up in the school summer holidays, and we always took a packed lunch and ate it outside. The ‘birds’ come from that, too – I remember the sparrows used to come and peck at our sandwich crumbs. I guess the childishness is explained by the fact that a lot of my thoughts to do with my heart defect are also to do with my childhood.

I think it’s quite encouraging that I managed to list so many positive or at least neutral words. When I first made the cloud I thought it was overtly negative, but then I realised lots of the words in the list are simply things that are just there – they are merely part of the experience of having a heart defect; not bad, not particularly good either, just there (bedpans, tests, screens, wires (although wires are bad if they hurt you)). Some words are a bit ambiguous – e.g. ‘parents’. I made them blue even though it is not really the case that they are ‘just there’ (and I’ve just realised I forgot to add ‘guilt’ to my cloud), partly because it seems the most diplomatic thing to do. ‘London’ is there because it’s always been the background to the story of my heart. When I was in hospital in 2008 I drew a picture of the skyline I could see from my window (hence also ‘drawing’) and at night when I couldn’t sleep I pretended the shapes I could see were animals instead of cranes and tower blocks.

I put ‘waiting’ in black, because I’m impatient. I think the other black words are self-explanatory, although some things like catheters and stitches are not really bad in themselves (they are there to help us) they are not very pleasant to experience.

This list of words is not exhaustive.

Batteries not included

So, I went for my pacemaker check yesterday and ended up staying in hospital overnight!

It happened (vaguely) like this:

I went to the pacing clinic as usual and a nice man started my pacing check, and within a couple of minutes asked me, ‘how have you been feeling recently?’ ‘Very tired’, I said. He replied that he wasn’t surprised because my pacemaker had very nearly run out of battery and had set itself into a different mode [power saving?] which was pacing my heart really slowly. Apparently, pacemaker batteries don’t run out like normal batteries. He drew me a diagram:

Batteries diagram
I drew this diagram

Normally, when the battery is getting flatter and it’s got to about 15% charge it goes into the mode where it paces slowly and you have about three months in which to get the battery changed before it completely conks out. No one is really sure when mine started seriously running down, but I (and the medics) think the tiredness I’ve been experiencing in the last few weeks is more than likely due to the faulty* battery rather than other factors (although they may have contributed).

*Apparently, pacemaker batteries don’t normally run out so soon. I’ve had my pacemaker since 2009, and I was told it would last 8-10 years, and it’s only lasted five and a half. The medics were rather shocked that this had happened and they’re going to send my old pacemaker to the manufacturer for analysis. I don’t know whether it is just because it had been working extra hard for me, but they seemed to think it was a mechanical fault rather than anything else. Which is a bit worrying really! As several people have said over the last couple of days, it’s a good job I went for the pacing check when I did!

Anyway, pacing technician was kind but firm and said he thought I should have my battery (just the box part of the pacemaker, not the leads) replaced as soon as possible, ideally today (yesterday). Needless to say I was a bit taken aback at this – not the day I had in mind at all! Fortunately, my mum was already looking after Babymouse and staying until Thursday anyway, so at least that was one thing I didn’t have to worry about too much. The pacing technician phoned the cardiologists and one of them came down to the pacing clinic to discuss options with me. There weren’t really many options! He had already booked me a bed on one of the wards, so I decided to just go with and get it done the same day.

Once I was on the ward I went through the usual joys of pre-operation stuff – showering in the sheep dip, as I like to call it (antibacterial soap) and changing into the fetching gown which I can never do up on my own. I now also had wet hair and no hairbrush or comb! Yay. I know this was the least of my worries really but my hair is untameable at the best of times, plus, there’s the psychological factors to consider, which I will (if I get round to it) consider in another post. Anyway, I phoned Mr C, who made his way over (his boss is very decent about things like this) and my mum, who was her usual calm self. Then I (then we) waited.

We had to wait until about 4.30 pm (having got to the ward at about 11.15 am) because I’d had an early lunch/late breakfast at about 10.30 am (not having had any proper breakfast) and there has to be six hours without any food or drink before you can have the procedure. 4.30 arrived eventually and I was wheeled down to the catheter lab where they performed the procedure. I was awake for it – they just use local anaesthetic, although I did have a tiny bit of sedation because I got a bit upset – and it was not a particularly nice experience, although I’ve had worse! It was rather odd and uncomfortable to feel someone rummaging around in the side of your chest trying to find a pacemaker. We could see where it was on the x-ray but because it had been in for a few years it was quite embedded and there was a lot of scar tissue around it. Once the surgeon had removed the old pacemaker box it seemed to be quite a fast process to put the new one in and sew me up,

After being unplugged from everything (lots of monitors) I was wheeled back to the ward to see Mr C, have a very welcome cup of tea and eat some sandwiches. All was OK overnight, apart from my pressure dressing falling off and having to be re-stuck (with the medical equivalent of duct tape), so I was allowed home late this morning.

I have to go back for another pacing check in six weeks. Hopefully the next check will be more routine! All the NHS people who looked after me were lovely and made what could have been a very stressful experience relatively all right.

Tired

This is a blog post about how tired I’m feeling. There, now you know you can either (a) stop reading because you can tell it’s not going to be very interesting or (b) carry on at your own peril – perhaps it will send you to sleep, which might be good if you’re tired as well.

Despite work actually being somewhat of a rest I am feeling very tired at the moment. I’m not sure whether this is because Babymouse is getting heavier and therefore harder to carry and push round (and up the many hills in Medway) in her pushchair or because I’m now working and looking after a baby (although of course not at the same time and my mum and Mr C do lots of the looking after baby bit) or whether the heart is just not very happy at the moment.

Lulu's first day out

A tired cat. Picture by hehadan on Flickr

I think perhaps it’s all of those things. I’ve changed my medication from the ACE-inhibitor to something with an even longer name, an angiotensin II antagonist, also known as an angiotensin II receptor blocker. We (the doctor and I) decided to change it as the ACE-inhibitor was (we think) the cause of an irritating tickley cough I’d had since November. The good news is, the cough seems to have gone, but the bad news is that we have to go through the whole rigmarole of starting on a low dose, having blood tests and gradually increasing the dose if all is OK…which is fine apart from I’m now on a low dose of medication again and I suspect it’s not doing very much – at least it doesn’t feel like it is. I don’t like it. I’m having trouble pushing trolleys round at work – something I used to not have much problem with, but the worst things are not being able to carry Babymouse for long and it is a massive struggle getting back up the hill with the pushchair when we’ve been into town. I have to stop lots of times! It’s frustrating and makes me feel a bit sad for some reason.

Let us hope the medication makes a positive difference once the dose is increased. I’m having my pacemaker checked on Monday. I’m (weirdly) slightly looking forward to this – time out on my own and time to read!

In other news, I finished my first proper crocheted item. Pictures may follow.

I think I failed my MOT

Not completely, I’m still working, but at my appointment on Monday my cardiologist said my heart muscle is gradually getting weaker (still only mild-moderate weakness), so she is going to put me on some medication – ACE inhibitors (I tried to think of a Doctor Who pun to put in here but I couldn’t think of a good one. I loved Ace, she was my first Assistant/Companion). It’s not just having Babymouse that’s weakened the heart muscle, there are 6 or 7 other factors that haven’t helped, e.g. getting older (!), the operations I’ve had, and even the pacemaker, which apparently my heart “doesn’t like”, which is a bit unfortunate as it needs it to keep me going properly!

I have mixed feelings about going on medication. I’ve always been sort of proud of the fact that I’ve never previously had to be on long term medication – I like telling people I’m not on any when they assume I am. I know that’s a bit silly. So, in some weird (or maybe not so weird) way, it feels like a step back – like my health is getting worse, which, I suppose, technically, it is. I just don’t really want to accept that, especially as I’ve actually been feeling quite well recently and thought I was coping alright with all the extra exercise looking after a baby entails. I think it was reading the words “heart failure” (as in ACE inhibitors are used to treat heart failure (these words were, wisely, not used by my cardiologist!) that was a bit distressing. Unsurprisingly, I don’t really want to think of myself as having heart failure. It seems so…final.

But, coming on to the positive side of my thoughts, it’s not final, precisely because there is medicine to take, and I’m fortunate enough to be in a place where I can take it! Hopefully it will prevent my heart getting worse, or at least it will get worse at a slower rate, and there are other things that can and will be done, apart from the medication (new pacemaker, another new valve, both a few years into the future), so I’m hoping I’ll be fairly well, even if my heart isn’t working at full strength. Well, it never has worked perfectly, and, thanks to the NHS I’ve been (relatively) OK, so hopefully I’ll continue in the same way.

Anyway, I will leave you with a lovely clip of Ace and the Doctor. It’s sort of appropriate…

Appointments

Sorry again for the lack of posts here. I think posts are going to be few and far between from now on, as BabyMouse (BM) is, unsurprisingly, taking up most of my time. I’m writing this now as Mr C is looking after a sleeping BM – she has slept most of today, which is good in a way, because we can (in theory) get on with things, but, on the other hand, I’m quite worried that she’ll be awake all night! She met her great-grandparents for the first time today. We had a nice but tiring day, including lots of chat and a Chinese meal for lunch. She’s growing well – eating a lot – and has learned to do exciting things like holding her head up, pushing with her legs and smiling! She has also learned to do a sad face when she’s upset, which is very, very effective in terms of getting the nearest adult to rush to her aid!

I’m doing a bit better now. Mentally, I’m usually OK unless BM isn’t OK, and then I get into a bit of an anxiety spiral. On Tuesday, the GP said I looked better than when she last saw her and that I’d given her a proper smile for the first time! Also on Tuesday, I had another glucose tolerance test, to see whether or not the pregnancy-induced diabetes has gone. I should get the results in about a week. On Monday, I went to the cardiac outpatients, to the pregnancy clinic actually, which was a bit odd, as I’m not pregnant! I saw the friendly doctor I’d seen back in March when I went for my postnatal check-up. I had another ultrasound (echo) on my heart a couple of weeks ago, which he said showed some improvement from the one I’d had in March (which had showed that the left side of  my heart had got weaker during pregnancy). So no medication for me yet. They’re going to wait six months (ish) after the birth to see whether my heart recovers completely (well, at least back to the state it was in before pregnancy). This means a lovely exercise test for me and another echo. Apparently after six months they will know whether or not the heart will recover properly. If it’s still weaker than it was before pregnancy they will give me some kind of medication. So we shall see. People often ask me if I’m on any medication for my heart (if they don’t assume I am, which lots of people do) and I’m  quite pleased to be able to say ‘no’, but if it’s necessary I don’t have any problems with taking it – I know I’ve been fortunate not to have had to take any for so long.

Anyway, I must go and water the plants and sort out BM’s things before bed-time. Yes, we go to bed early in this house now!

 

I ♥ London

Last Saturday (12th October) Mr C and I attended The Somerville Foundation Annual Conference, which was held in London this year, alongside the youth conference hosted by the Children’s Heart Federation. It was a convenient location for us and, as usual, was held at a rather nice hotel that provided us with lovely food. The irony of having talks on healthy living followed by masses of not-very-healthy food never escapes us. Although, to be fair, there were healthy options if you wanted them.

The day followed the usual pattern of talks, break, talks, lunch for the morning, but this year we also had talks in the afternoon, whereas in previous years we’ve had workshops. I (and other people I spoke to) actually preferred to have more talks, especially as they were so interesting this year. There was a “Wellbeing Room” and a quiet room, which were open all day so you could drop in as and when/if you wanted a break from the main events.

I won’t go into details about all the talks – there was a lot of information to take in, but here is a brief summary of  the what we learned about:

  • What is a Grown Up Congenital Heart? This title didn’t really make sense, but the talk itself was really interesting. Dr Shay Cullen from the Heart Hospital talked about how the heart develops and about the history of heart surgery and treatment for various congenital heart defects. It was noteworthy that there are now more adults with congenital heart defects (CHDs) than children with with CHDs – despite this there are about 157 (can’t remember this figure exactly) paediatric heart specialists and 25 adult congenital heart specialists.
  • Grown Up Congenital Heart/Adult Congenital Heart Disease Treatments – where are we in 2013? was a talk by Professor Michael Gatzoulis from the Royal Brompton Hospital. He talked about the advances in medical equipment and care, but also emphasised the need to listen to those who actually have CHDs in order to assess how best to care for them. He also spoke briefly about the now-defunct “Safe and Sustainable” review of children’s cardiac care in England and Wales, emphasising that we, as patients, need to keep up with government developments relating to our services, so that we are able to make informed decisions about our own care.
  • EPS and Ablation in Complex Congenital Heart Disease. Dr Sabine Ernst, lead for electrophysiology research at the Royal Brompton Hospital, gave a very enthusiastic talk about the latest in treating arrythmia using electrophysiology (EP).  EP is used  to identify the origin of the arrythmia and then ablating the relevant part of the heart muscle so that it can no longer conduct ‘incorrect’ electrical impulses that cause arrythmia. The new technology uses magnets to guide the catheter into the heart, and because it uses leads that are bendy, this negates the need to puncture through parts of the heart in order to access the part that needs treating. It was surprisingly exciting to see a video of the machine in action!
  • Aortopathy for the Grown Up Congenital Heart. This talk was given by Dr Bejal Pandya of the Heart Hospital, and was about problems with the aorta, including aortic aneurysm and coarctation  (narrowing) of the aorta, the latter of which is a common form of congenital heart disease, and also something that can be caused by some types of treatment for other forms of congenital heart disease.
  • Exercise and How it Affects People with CHDs. Dr Kostas Dimopoulos gave an entertaining but thought-provoking talk about exercise, including information about what types of exercise are suitable for people with particular types of CHD. Contrary to some beliefs about people with CHD, many, if not most, of us are able to, and should, exercise regularly. Unfortunately, medical practitioners used to tell people with CHDs that they shouldn’t exercise, and this belief still prevails in some quarters.  I know I need to exercise more! Fortunately, there are ways to exercise that don’t involve going to the gym, including walking, gardening and housework!
  • Psychological Care and Assessment of ACHD Patients. Dr Natali Chung and Dr Jane Hutton, and Ms Hajar Habibi from St Thomas’ Hospital and King’s College London talked about their project to improve psychological care and assessment of adults with CHDs. This involves the person completing a short questionnaire at their out-patient’s appointment, then the data collected is passed straight to the consultant so any issues can be discussed and followed up if necessary. They have also produced some self-help leaflets that will be available on the IMPARTS website soon. I found this talk particularly interesting, as psychological care of people with CHDs has long been something I’ve wished more medical professionals would focus on, so I hope that the kind of programme now introduced at St Thomas’ will be rolled out to all other specialist ACHD centres. Dr Liza Morton has also done a lot of work in this area – some of her articles are available on the Somerville Foundation website, as is other information and advice relating to mental and emotional health.
  • Interventions and Implantations. Dr Anselm Uebing gave a talk about cardiac catheterisation, which included the slightly disturbing fact that the first doctor to perform a cardiac catheterisation, Werner Forssmann, did it on himself! In the present day, catheters are used to carry out procedures that would previously have required open heart surgery. However, while less invasive, these procedures are not necessarily safer than open heart surgery.
  • Healthy Ageing/The Next Phase in CHD Management, by Professor John Deanfield of the Heart Hospital. This was a rather sobering, although at times amusing, talk about the perils of ageing and in particular the affects of an unhealthy diet and lifestyle on our arteries. Like other people with a CHD, I’d (perhaps oddly) thought I might be immune to such things as blocked arteries due to cholesterol, etc., but this was mainly because I thought it would be unfair for me to have that as well as a CHD, which, I admit, it not logical at all. Anyway, the harsh reality is that we are at just as much risk as the general population, of course our existing heart conditions will not make things any better! It turns out that arteries can start furring up from a fairly young age – around 30 – so it is important that we start changing our eating and lifestyle habits as soon as possible. The good news is that deterioration is reversible if we start to make changes now. This talk resulted in Mr C and I agreeing to no more take-away pizza or fish and chips or beer (in Mr C’s case), which is a bit sad but for the best. Also, I must walk up the stairs more at work.

The final two sessions were an update on fundraising, which was encouraging, and a question and answer session where we could ask questions of an expert panel made up of Anne Crump (The Somerville Foundation’s Mental Health Worker), Professor Deanfield, and Dr Uebing.

All the sessions were interesting, but, as usual, my favourite part of the conference was being able to meet with other people who have CHDs – many of whom we’ve met before – it’s always good to catch up. We did this during the day at various times, and also over the annual dinner which was held in the evening. Unfortunately, Some of our friends hadn’t had a good year since we last saw them. If I’m feeling well, sometimes I forget I have a pacemaker, and I don’t think about my heart condition all the time. Meeting friends who haven’t been or aren’t well, and knowing that there are people who are no longer with us due to their heart conditions, makes me realise that I’m lucky to have these times when I’m alright. I know it won’t last. Inevitably, I’ll have to have my valve replaced again, and my pacemaker changed, and I don’t know what else. I don’t know how I’ll  be in 3 months or 6 months or how I’m going to cope with carrying the baby when it gets bigger (before and after it’s born!)…but I probably need to write another post about that!

For now, I’m just taking a day at a time and trying not to worry too much about the future, and, as ever, I’m grateful for the help and support I have from my friends with CHDs, as well as for all the technological and medical advances that we’re fortunate enough to be able to access in this country.

Thanks to Mr C for his thorough notes, which have been very helpful in writing this post!

P.S. Forgot to mention, Jane Somerville herself popped in to the conference which was quite exciting. I’d never seen her in real life before. A formidable woman! I must listen to her Desert Island Discs!

On being a cyborg

When I think of cyborgs I picture a Terminator, or perhaps one of the Cybermen from Doctor Who. Not me. And yet, because I have a pacemaker, I am a cyborg*:

a person whose physiological functioning is aided by
or dependent upon a mechanical or electronic device.

Dictionary.com**

There are plenty of us out there who fall into this category; people with pacemakers, mechanical valves, artificial legs, eyes, hands, whatever. Some people would argue that even people who wear glasses are cyborgs.  A discussion about someone wearing glasses being a cyborg was actually what started me off thinking about this whole subject of cybernetic humans. Here is a bit of it:

I don’t know whether people who wear glasses really count as cyborgs, though. Mainly because the glasses are not a part of them in the same way that the pacemaker is part of me – it’s in me and literally intertwined with me. I can never be without it. It’s part of the mechanics of my body in a way that is very different to the interaction between someone and their spectacles. However, I see the flaws in my argument – what about people with removable prosthetic limbs? for one.

The idea of people-technology hybrids as being “more than human” is an intriguing one. Cyborgs are more than human in that we’re humans with ‘add-ons’, as it were, but not usually in the sense that we’re enhanced beyond normal human capabilities. However, we are also not less than human (which was Simon’s point). We usually think of cyborgs in the context of science fiction, where they’re quite often portrayed as the bad guys; and we think of them as being somehow less than human – robots, rather than people enhanced with machinery – so the term ‘cyborg’ can carry quite negative connotations. [I’m not sure whether the Cylons in Battlestar Galactica really count as cyborgs, but there is an excellent and fascinating case in point if they do.] As well as this, some people can get a bit freaked out when thinking about machine-human hybrids. Being part-machine is  not natural, it’s not ‘normal’, and humans tend not to like things or people that don’t fit their ideas about what is natural or normal. Bizarrely, when I went to see the surgeon before my heart surgery in 2008 the thing he said that upset me most was that I might have to have a pacemaker. I still can’t coherently explain why, but I think it was just the idea of having something in me that wasn’t me. It just seemed wrong. But now I know it’s perfectly alright, and being a cyborg has improved my life tremendously!

It seems that the definition of who or what is a cyborg has moved far beyond my personal opinion and what the original definition of the word referred to. If I remember rightly, the conversation on Twitter went on to discuss cyborgs and librarianship. If you’re interested in such things you might want to have a look at Simon’s post on the subject. Further afield, at least one person is arguing that “we’re all cyborgs now”:

What do you think?

_______________

*Although I may be paranoid, this is not to be confused with an android.

** Interestingly, not every dictionary defines “cyborg” in the same way. Some define cyborgs as being fictional or hypothetical, and as someone who is technologically enhanced beyond normal human capabilities. However, if one goes back to the original of cyborg (cybernetic organism) as someone who is part-machine and part-human then cyborgs certainly do exist, although most ‘real’ cyborgs are only enhanced ‘up’ to, rather than beyond, normal human capabilities (if that). Even with my pacemaker I’m not going to win any races! However, I’m pretty sure I exist…