M.O.T.

Today I went for what is affectionately known as my MOT, otherwise known as my annual visit to the heart outpatients clinic. I don't think that's the real name of the clinic but never mind. It is held at Harefield Hospital, in Middlesex, and I've been going there for more years than I can remember (literally).

Getting there is a bit of an epic journey, involving a train into London, going all the way across London and out the other side to the far end of the Metropolitan line on the Underground, and then a bus from Uxbridge station to the hospital. One of my favourite parts of the day is the lovely view from the bus on the way to the hospital, across some lovely green fields and a very nice looking lake/reservoir.

For once, we got there really early, so we had some food in the canteen bit, and saw the same ladies we see every year serving the food. The canteen at Harefield was built in 1974, and I have visited every year since about 1980. It's remained the same all that time. I think even the ladies are the same ones. They are what I call 'WI' ladies, and are very lovely and make excellent sandwiches and tea. Bizarre fact: you can buy a postcard of the canteen from the canteen. I have done this.

I had my ECG (electrocardiogram) and Echo (ultrasound). For anyone who wants to know and doesn't (if there is anyone), the ECG is the one where they stick lots of wires to your chest, ankles and wrists using sticky pads and then get a reading of your heart rate, beats per minute, 'pattern' and other things I'm not quite sure of. If you know please tell me - I meant to ask but forgot. This is the thing, after 20+ years of having these same tests I still don't know exactly what they do!

The Echo is basically an ultrasound similar to the ones you might have seen pregnant ladies having. The technician can see 'inside' the heart - the way the valves are moving and the blood is flowing through the heart. When you're having it done you can see your heart on screen, which is quite interesting, although obviously I wasn't sure which bit was which, but the opening and closing of the valves is quite easy to make out. I had a trainee technician for this at first, but as I'm an awkward customer and my heart isn't easy to see, she had to call in another lady, who is another person I've seen for years and knows what a problem patient I am. She recognised me, which was nice. It's quite comforting to see familiar faces each time I go.

Today was my first meeting with my new doctor, after having the same one for 25 years. Happily my new doctor seems very good, and friendly and approachable as well, which is always a bonus. She was more thorough than my old doctor, maybe partly because it was my first appointment with her and she needed to find out the status quo. She tried to take my pulse, but couldn't find it (noone else can either), and measured my oxygen levels by putting one of those things on my finger. I was interested to find out that this is what those things are for (sorry if you have no idea what I mean - they have them in Holby City (yes, apologies, I do watch this)). Apparently I have oxygen levels of 98%, which is good. She asked me quite a lot of questions about how I was feeling (ok), whether I was feeling more tired now than previously (a bit) and what exercise I do (not much). She also asked if I had any questions, which I appreciated, as not all doctors take the trouble to do this.

I asked her about timescales of having the valve replaced/repaired if we decide not to/can't have children. Basically it depends on whether I feel like I'm 'deteriorating', health wise - whether I'm becoming increasingly tired or unable to do as much as I used to, etc. This is something I'll have to monitor and let her know, even if it's only a slight change. It's quite hard to measure this though. Recently I've noticed that I feel tired/out of breath more easily, but I don't know whether this is (a) because I'm older and more aware of things (b) because I'm older (!) (c) because I'm just more unfit generally than I used to be or (d) an effect of the leaky valve.

The main factor though is still the 'children issue'. If we can physically have children we would then need to decide when (or if) we want to have them*, and then the valve would have to be repaired, and then we would start trying to have them. As you can tell, the timescale for all this could be rather long, and, cliche though it may be, I'm not getting any younger.

*You could argue that we should have discussed and know this already. However, we've found this difficult to do because we don't know whether we can have any. I hope that makes sense.

I also asked the doctor about the wire(s) (see a previous post). She said that they could remove them but obviously this would involve surgery, which it's better to avoid if possible. Although they're quite uncomfortable at times I don't really fancy any more surgery than is absolutely necessary, so I suppose I'll just have to put up with them.

I apologise if some bits of this post contain too much information! I know I find my medical history interesting, but I do appreciate that not everyone else will feel the same.

Story

I've finished my 'story' about my life with a congenital heart defect (thrilling stuff), and I need to send it in by the 31st of July. I am deliberating over whether to send it in or not. I'm not sure whether it's very good, or even whether I want people to read about my feelings about heart-related matters. I'm a bit worried that my parents might be upset if they read it because I've never really expressed my feelings about all my medical 'issues' before. I don't know. Maybe I should ask my mum to read it first? But then she might not like it and/or say it's not very good. I suppose now it's written I should do something with it. Well, I have four days to decide, so I will have a think.

The story of my heart

Is that a song title? It might be. Anyway, I still haven't even started writing my GUCH story, and only 33 (? maths isn't my strong point)days until the deadline. Actually, that is quite a while, maybe that's why I haven't started yet - not enough pressure. I am a bit appalled, though, that I can't think of anything to write about what has been a major part of and had a major effect on my life. It might be more a case of just not knowing what to pick out (see previous post on this subject). See I am procrastinating instead of getting on with it. Maybe if I wait until 29th July to start I will be more successful?

Or maybe the truth is that I don't actually know what to say because I don't know enough about it. I have always felt under informed, if that's the word, about my own medical history. I think this is because I was quite a small child when all the major things were happening, and I don't actually remember anything much about those early years. I think I might have subconsciously blocked out memories, because I seem to be able to remember a lot less about my childhood than other people can - or maybe I just know people with good memories! The things I vaguely remember (or think I do) are:

1. Being baptised in hospital, although it is apparently impossible for me to remember this as I was only a few days old at the time.'
2. Eating ice cream with a friend on the ward aged three?
3. My fourth birthday. Just after I left hospital after my operation I think. The nurses gave me a large cuddly mouse wearing a pinafore dress and mob cap, which I still have. She is called 'wobbly mole' even though she's not a mole, but she is quite wobbly.
4. Having a catheter put in and looking at my insides on a monitor.

Another reason I think my subconscious has been at work is my (sometimes quite extreme) reactions to any sort of even vaguely invasive procedure. Going to the dentist can be very embarrassing as I have a tendency to cry. I have found that humming helps, although I worry the dentist then thinks I'm insane. Having a blood test used to be the same, but I am now not so bad if I don't look at the needle. Having my ears examined at my regular check-ups (I had gromits - no not the dog) was a particularly dreaded activity. The doctor reminded me of Jerry Adams, but this wasn't why I hated going - I could not stand him poking his little sticks in my ears and I made sure he knew this! I felt sorry for the nurse, but not really for him. I cried, I whimpered, I tried to escape. This would not have been so bad if I had been aged three, but I was about 16-17 at the time. Thankfully I don't have to go there anymore.

Bizarrely, actually going to my heart check-up is the least stressful medical thing I have to do nowadays - maybe because I've done it so often. It takes a while because I have to have several tests - ECG, ultrasound and sometimes x-ray (used to be x-ray every time) and is very boring for the person who comes with me (if anyone does) as it involves a lot of waiting around. I have had to have an MRI scan which I have written about previously [summary, I panicked, got claustrophobic (not necessarily in that order!) and had to be let out. I never want to have one of those again]. I then had a CT scan, which was better even though it involved needles...ok, just one, but that was enough. You can also read about this in a previous post, if you would like to, but it's probably not very interesting! Before the MRI they attempted an endoscopy, but this was not a success as I reacted like I reacted to the Ear Man, but worse (aged 25).

Needless to say, I feel very silly when I react badly to members of the medical profession who are only trying to help me, but I just can't help the way I react. (Hence my idea that it's subconscious reaction to previous experience of medical procedures).

Usually with the check up I know what's coming, basically at least. More recently though, there has been talk of mending my leaking valve (again - the one I have now is a replacement) and I have a new consultant, as the beloved Rosemary Radley Smith has retired. She gave me some of her blood once! So, I may once again be heading into the unknown. RRS, as she is known (to me, at least), said I should have the valve repaired before I start having children (if I ever do), and although I don't know if we will, or even can, have children, I would like to have the valve sorted out - it would be one less thing to worry about. Well, I will see what the new person says in August.

I don't often talk about my heart. For one, as I said earlier, I don't really know what to say. For two (oops) I don't want people to think I'm making a fuss and implying they should feel sorry for me. Having said that, I confess there is a part of me that wants people to recognise that I have been through these things, and that I'm not being a wimp when I can't run to the train station or keep up with people going up hill, and that I'm not being completely unreasonable when I cry at the dentist's.

[Feel free to disagree!]

Money for old rope

A guy called Paul Youngson has come up with a great idea for raising money for charity. He started with a piece of old rope, which he then traded for some lots of pairs of children's scissors (strange item!), and then he traded the scissors for an official's shirt from the Sydney Olympics. Paul hopes to go on trading items for 18 months, until he auctions his final item to raise money for GUCH - Grown Up Congenital Hearts. GUCH provides support to adults who have congenital heart defects. You can see the link to his blog in my all new Blogroll on the right, or click here.

GUCH

GUCH is the "Grown Up Congenital Hearts" Patients Association. I am a GUCH. I'm not keen on the term GUCH though, I think they could have thought of a better name. Anyway, in the latest GUCH News magazine they were asking for people to write stories [presumeably non-fiction] about their experiences as a GUCH. They're hoping to publish them in a book. I'd like to write something, but I'm not sure exactly what to write about. I don't want it to turn into my life story. I should think of a specific time or incident to focus on, but I can't think of what would make a good 'story' or be interesting for other people to read. At the moment I have several things I am thinking of writing about:

• School
• Having an MRI scan
• University
• Having a CT scan
• Having children (or not)

None of them sound particularly interesting do they? Oh well, I will keep thinking.