Basically, my heart is about the same as it was last year, apart from the changes in its electrics, which is good. Although the heart muscle function is impaired, the impairment hasn’t got any worse since last year – the echo pictures look basically the same. I’m currently feeling less tired than I was the last time I had my MOT, which is also good, but we don’t really know whether this is due to reducing the dosage of beta-blockers, having a day ‘off’ a week or improved diet. So, the plan is to carry on as we are and then re-test everything as usual next year.
She asked me if I had any questions, so I asked about my long term prospects. These are OK at the moment. I will probably need my valve replacing at some point in the next few years, but we hope this can be done percutaneously (this is not a word, according to WordPress spellcheck!) rather than by open heart surgery. I might never have to have open heart surgery again! One can only hope. Also, if my heart muscle function gets worse they will add in some medication and will probably change my pacemaker to more modern one (bi-ventricular?). I will probably start feeling palpitations more and more as I get older, but these can be treated with meds and/or ablation.
As you can see, there are a quite a few ‘probablys’. It’s hard to predict what will happen – my heart could remain stable at this level of (dys)function (actually not too bad, considering) forever or it could get worse, in which case see above. If it ever gets really bad, things like transplant and mechanical hearts are an option, but my cardiologist doesn’t think it will ever get to that stage. Let us hope not.
Walking with B is frustrating (when she goes too slow), worrying (when she runs off), maddening (when she won’t come back); but also interesting, amusing and good exercise (particularly when chasing after her). She is being a stereotypical toddler at the moment -not doing as she’s been asked 99 % of the time. Fortunately, there is still that 1%…for now. It’s all very tiring because everything is a bit of a battle, from getting dressed in the morning to going to bed at night. Our current system (haha) is to take away things from her if she doesn’t do what she’s told, e.g. no stories before bed; no sweets, etc. [Yes, we let her eat sweets, sorry not sorry*][*what does that even mean?] but quite often it doesn’t work because she’ll do the bad thing anyway and just lose her ‘treats’. Not sure what else to do, though. I think she’s too young for the naughty step and I’m not convinced this is the best way forward anyway – it seems a bit mean to me (as it boils down to withholding affection) but I realise lots of parents find it useful, so what do I know? Not a lot, is the answer to that question, and therein lies (part of) the problem! Answers on a postcard, please?
In other news, B’s speech is very good for her age (so I say as her proud mother) and she has discovered (pretend) reading on her own. Her favourite book to ‘read’ by herself is currently Winnie-the-Pooh’s Little Book of Feng Shui**. Make of that what you will…
*A Midsummer Night’s Dream (Act 3, Scene 2)
** I don’t believe in feng shui. I do believe in Winnie-the-Pooh.
I went went for my pacing check last Monday. All was well. In fact, my heart is actually working better than it was before. For some reason (unknown), the node that wasn’t working, which meant that the lower ventricle of my heart was being paced all the time as I had complete heart block, is now working quite well. The technician has now changed the algorithm so that my heart will work on its own as much as possible, but the pacemaker will still stop my heart rate less than 60 bpm. The technician this change in the node’s behaviour was “mind blowing”. I said it was weird. But, either way, it is good.
Mr C and I went to the Somerville Foundation‘s annual conference on Saturday. As I may have said before, Mr C refers to this event as me being with my own kind, which is true. The powers that be are thinking of stopping the conference, which would be such a shame. I can see where they’re coming from – the Foundation’s funds are diminishing rapidly and I expect the conference is one of their biggest outgoings – but for us, the people with CHDs, not having the conference anymore would be a big loss.
It’s not just the fact that it’s an informative and interesting event, but it really comes back to Mr C’s joke about being with my kind. Yes, we are with ‘our kind’: people who have been tested, prodded, invaded, cut open, had our rib cages sawn in half, been injected, sedated, medicated, treated, mended (for now). Someone once told me that having open heart surgery has a similar effect on the body to a bad car accident – and here we all are, in this room in a fancy hotel in Leicester, walking around, laughing, eating, thinking, discovering. Living. I think we need this, we need to be together and to not feel like the minority, the different ones, for a change. I think we deserve this company of our fellow survivors and the opportunity to share our stories and be properly understood.
Anyhow, as usual, it was lovely to see everyone (well, nearly everyone, some people couldn’t be at the conference this year, which was a shame. (Hi Jo!)). I think my favourite talk was the one about developments in non (well, less)-invasive surgery – carrying out surgery using cardiac catheterisation We’d heard about it at conferences before, but this was the first time we actually got to see and handle some of the devices that are used. I took some pictures:
I also appreciated the talk from Anne Crump (the SF’s Mental Heath Support Worker) about dealing with anxiety relating to having a heart condition. Again, we’ve heard Anne talk about this before, and I was expecting it to be a bit samey, but actually, I realised I needed to be reminded that it’s OK to be anxious about stuff. In a way, it would be more odd if we weren’t sometimes worried about our heart conditions! Recently, there has been more research about the psychological effects of growing up with congenital heart disease, even post-traumatic stress disorder, which seems quite extreme, but actually isn’t that unlikely, given what some people who’ve had multiple surgeries and other invasive medical procedures have been through. Sometimes I think we just need to give ourselves a break!
Another highlight was Kate’s talk about her bike ride from one end of Ireland to the other. An amazing example of hard work, determination and perseverance; Kate was raising money for the Somerville Foundation. Her blog is well worth a read.
If there isn’t a conference next year I hope we can all find another way to meet, but I’m not sure that this is very likely, given logistics and people’s commitments etc. I think sometimes it take an organised event to get people together, and I’m not sure we can rely on people to take it upon themselves to set up meetings, but perhaps I’m just being pessimistic! Anyway, we shall see.
It’s a bit oddly shaped, but hopefully it will look better on my friend’s baby than it does on Monkey! I’m currently working on some booties for the same baby in case she (or her parents) don’t like the hat!