Showing posts with label medical matters. Show all posts
Showing posts with label medical matters. Show all posts

Friday, September 15, 2006

For those who may be interested

Thank you to those of you who have posted or emailed supportive, helpful and friendly things following the posting of the horrible comment. I thought some of you might like to know what happened next in the saga of going to the doctor, so here is a summary:

I went to the doctor's again and showed her the letter I'd written. She said she didn't know what to advise because I have so many abnormalities, which wasn't very encouraging! I'm going to contact my cardiologist and also follow some leads of my own to try and find out more information. At the moment though, Mr C and I are erring on the side of caution and thinking that the best plan might be to take the safest and most sensible option and not try to have children naturally. If we did decide we wanted to start a family later we would adopt, assuming we would be considered suitable adoptive parents.

Thursday, August 31, 2006

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.

Monday, July 31, 2006

Vertical and horizontal

In Come Dance With Me, by Russell Hoban (again), one of the characters, a doctor, makes an interesting observation about the doctor-patient relationship, imparted to him by his predecessor at the hospital:


'It's a matter of the vertical vis-a-vis the horizontal' [...]
'The doctor is vertical; the patient is horizontal, even when they're walking
around. The doctor wears a suit, the patient is in pyjamas, even when they're
fully dressed.

This quotation illustrates how a lot of 'patients' feel, I think. When I go to the doctors, or for a test or a scan or whatever, I often feel (metaphorically) horizontal even though I'm not. I feel like I'm the one in the wrong and that the doctor is in the right. I feel powerless and vulnerable and at the mercy of the medical professional who's performing the test. A horizontal person in pyjamas (or worse, a hospital gown) is not supposed to ask questions. They're supposed to submit to what happens to them, and they can't run away because they don't have their clothes. I don't like it.

I don't like the indignity of having to take my clothes off in front of strangers so that they can examine me. I don't want to submit to the intrusions. As soon as I'm no longer in my own clothes and in one of those hospital gowns I'm no longer myself - I am a Patient who is there to have things done to her. Not only have I lost the protection of my clothing but my identity has been taken away.

At the dentist's the fear really kicks when I get to a certain angle in the chair. I don't like tipping my head back to have my hair washed in the sink at the hairdresser's because I worry that I won't be able to get up again. Until a couple of years ago I always had nightmares when I slept on my back. It's too vulnerable a position.

Sometimes I feel more vertical than others, depending on what's happening to me/who I'm talking to. I suppose the more intrusive the procedure the more metaphorically horizontal I feel.

I don't want to sound ungrateful, I just want to put across my point of view. I'm not sure about the layout of the quotation. Weird.

Tuesday, June 27, 2006

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!]

Friday, December 02, 2005

CAT scan

Today didn't begin very well. I used Mr C's keys to open the door and left them in the lock as we went out. Not knowing this, and thinking I had taken them out, Mr C shut the door, locking us out. I had my keys with me but obviously they wouldn't work as the other keys were still in the lock on the other side. So, panic ensued, but I had to go to catch the train. Mr C waited til the estate agents opened and got a spare set of keys and got in through the back door and all was well.

Meanwhile, I got the train, which then became very delayed, and I missed my slot for my CT scan. I had to go and have a CT scan because the consultant hasn't been able to see my replacement valve very well on the echocardiograms I've been having. This is because of the position of my heart/the valve I think. At first she sent me for an MRI scan, but this was not a success - see previous entry. So, she scheduled the CT scan for today. Anyway, they fitted me in. My pulse was a bit fast (probably due to me being scared), so I had half a sedative, and then went for the Echo while it kicked in. Then I went back to the CT scanning place.

The CT scan is a lot better and less scary than an MRI scan. I probably would have been fine and not fussed at all, apart from the fact that I had to have a drip in my hand through which they injected dye to show up the arteries and vessels. I hate needles. It wasn't pretty. The consultant radiographer (who put in the drip) was great and just told me to stop whinging. I'm serious about him being great by the way! It took two attempts to get the drip in - I have very small and uncooperative veins. Anyway, the scan itself was fine, although my hand hurt and I was still scared, but I could see the radiographers in their little room, so that made me feel more reassured. They got some could pictures, which was the main thing.

After the scan, I went to see the consultant. It was my last appointment with her, as she is retiring at Christmas. She was pleased with the pictures. They show that the valve is narrowing slightly, but it's not bad enough to need treatment at the moment. I will just go for yearly appointments again now, and have it kept an eye on. She said I'm ok to go on long haul flights, which was a relief - thought I'd better check before the honeymoon!

After I'd finished at the hospital, I went back into London. I had an appointment with a student from UCL, who is doing a study about how people with long term medical conditions cope (or not), and why some people cope better than others. The study is focussing on people with Primary Ciliary Dyskinesia (PCD), which I have. It was interesting to take part in the study. Basically I just had to be interviewed about how having PCD may have affected my life, and the lives of my family. I'm not sure how representative I am, as my symptoms are not very severe now. They were more so when I was a child, so I was able to talk about how it affected my childhood. Because I have/had other medical conditions, such as the 'heart thing' it was tricky to separate out the effects of the PCD as opposed to anything else. Hopefully I was of some use.

The train on the way back was also delayed. I am very tired from everything today.

Sunday, November 20, 2005

Le Weekend


This weekend hasn't been terribly exciting. A went to London yesterday, to meet up with his siblings (and T, as it turned out). They had quite a good day - went to the usual place in Chinatown, then had Thai for dinner, and talked about various things. These included the lack of alcohol at the wedding.

We have decided not to have alcohol at the wedding, partly because the wedding is at 11.00 and will be over by 5. 00pm (not usual drinking time and people might be driving home the same day), and partly because we thought Dad would prefer it. T and A's sister wanted to know whether they could bring their own wine, and was talking about providing "a crate" of wine. I am not sure whether they think we are not having alcohol because parents don't want to pay for it and are being kind (especially in T's case), or whether they really don't think they can sit through a wedding without alcohol. More than either of these two reasons I think it may be that they haven't read the info where it says about the timings of the wedding and reception and/or think we are having an evening do and don't want to have to dance without drinking (in which case I can sympathise slightly). Before I rationalised it with A I felt quite offended - why can't people just accept our decision and leave it alone. It's our wedding!

To add to the negative feeling going around when A told me about the conversation, it turns out he thought that the proposed lack of alcohol at the wedding was a direct order from Dad, even though I had never said this. I had said I thought it was what Dad would prefer, and that's why I thought we made the decision not to have any, and I thought A was happy with that. However, he wasn't really but didn't say anything and now it's too late because we've talked about the drinks with the caterer and sent out lots of invitations saying that the drinks served will be non-alcoholic. Anyway, people can bring their own if they really feel they can't do without - maybe they will be ok once they actually read the info and see what time we are supposed to finish.

I stayed at home and did the cleaning. I also put some new photos up in the lounge, in a frame I got bought when I left my opening envelopes job 3 years ago. It only had one picture in it, which was cut from a card. It has three pictures in now and is looking better. I also took a photo of me out of a frame and put in one of me, A and A's family (apart from his brother) with the swans in Hyde Park. After that, I blogged - started putting my dissertation into a blog about Libraries and the Second World War.

Today, not much has happened. I helped with Sunday school. A has put his name down for the refreshments, door and reading rota. We went to Debenhams for lunch and I went to try and find Ralph Lauren's "Ralph" body lotion for H's birthday. Looked in Deb's, Boots and Superdrug, but no one stocks it. Maybe I need to go to a bigger store. Or maybe it doesn't exist! This afternooon we chased people for addresses - half of A's friends haven't had their invitations yet, because he doesn't know their new addresses, and they haven't responded to messages left. We got hold of a couple of people. A talked to his friend in Malaysia - I'm scared of the phone bill now! I talked to him on MSN - much cheaper! He and A are very similar. They were at school together.

I had my new patient appointment at the doctor's on Friday night. It was an amusing experience. I think the Dr is a bit eccentric, or maybe he is just very American (or Canadian - I don't want to offend). He said, 'have you had any serious illness in the past?', I said yes...and handed him my medical notes. He looked at them and said 'Oh my God' after every item he read (imagine in an American accent for a more amusing effect), and told me to photocopy the summary of my notes. Apparantly my blood pressure is ok - I wasn't sure it would be, given the stress of work etc recently.

It feels really late - more like 10.30 than 9.30. I must stop typing. I think I may be obsessed!

Tuesday, October 18, 2005

Hello Tuesday!

Tuesday! Today was quite good. Lots of amusement in the office. I am going to get more responsibility now Boss has got a promotion - not sure if I will get the pay rise to go with it though. Hmm. Well, you never know. I always seem to write my blog on a Tuesday night. I wonder why that is. The TV is really loud. Maybe it's just the adverts.
And now it's the news. Apparantly it is bad syntax to start a sentence with 'and'. I am not so sure.

Had driving lesson today. It was ok, although I stalled in the middle of a roundabout, which was a bit dangerous! Did a good reverse round a corner though. I actually prefer the manouveres to driving around, which I believe is unusual.

Annual check up at the hospital for heart on Friday. Not sure what doctor will say as I couldn't do the MRI scan.

You know what? Sometimes I think about stuff that is happening in the world and for a moment I think it was a bad dream, but then I realise it is reality. For example, terrorism, Iraq etc. I always thought the 'good' side would win, but my own country isn't doing the right thing, and we are not safe anymore. I'm not really very old, but the world has changed so much since I was a child, even since I was at University. Such a different world now. Shame we didn't realise how fortunate we were then.

Does anyone know the song 'The night I heard Caruso sing'? One line says 'I thought of having children but I've gone and changed my mind'. (See below). That's how I feel 99% of the time. I don't think it is a good idea to bring children into this world. Maybe things will get better though. We will see.

"The highlands and the lowlands are the routes my father knows,the holidays
at Oban and the towns around Montrose,but even as he sleeps, they're loading
bombs into the hills,and the waters in the lochs can run deep, but never still.

I've thought of having children, but I've gone and changed my mind.It's
hard enough to watch the news, let alone explain it to a child,to cast your eye
cross nature, over fields of rape and corn,and tell him without flinching not to
fear where he's been born.

Then someone sat me down last night, and I heard Caruso sing.He's
almost as good as Presley, and if I only do one thing,I'll sing songs to my
father, I'll sing songs to my child.It's time to hold your loved ones while the
chains are loose,and the world runs wild.

But even as we speak, they're loading bombs onto a white train.How can
we afford to ever sleep, so sound again."



It's a beautiful song. Apparantly it is on the album Idlewild (the album by Everything But The Girl, not the band Idlewild)

I'm sorry this post is so negative. Maybe it's cos I watch the news whilst I write!