Things I feel I ought to know but don't

[Alison Fisher]

Hey up you lot - you're all typing faster than me. Slow down!

Thanks for your reply Sweet. It's making more sense to me now. When I went on the waiting list for my first graft they could no longer fit me with lenses and to be quite frank I was in a right mess. In 1992 a graft was the obvious thing to do. Having the second one done was a harder decision to make, but naively my reasons for agreeing to it (they had been pushing me to have it done as soon as the first healed) were based on getting it out of the way sooner rather than later as I wanted to return to work when my youngest started school.

Hey Andrew, don't worry. I'm sat here feeling all fuzzy headed with a rotten cold so I'm not really firing on all cylinders either.

I knew there was a higher risk of glaucoma but not cataracts. I'm incredibly laid back about what the future might hold for myself. I shrug and think that I've coped with a whole load of stuff and somehow managed so no doubt if it came to it I would again, but when it comes to my girls I worry like crazy. But then I've never claimed to be logical.

[Carol Vines]

alison don't worry about not feeling very knowledgeable about KC even though you were diagnosed 25 years ago, i too was diagnosed all them years ago and i'm forever learning new things about our condition. for example i was still using tapwater to swill my lenses after cleansing up until going to a KC group meeting at birmingham in 2002, the optician i was then just presumed i knew

has for opting for a graft i feel its down to each individual's case to decide whether to take that route or not. i for one have struggled through wearing the small cornea rgp's for the last 25 years and intend on continuing wearing some form of lens for as long as i am able, respecting at all times others are not always left with that choice.

ps if your ever up for a coffee i only live down the a6 from yourself

[Andrew MacLean]

It is precisely because we all get intimidated by the consultant that I take a list of the things I want to ask in with me.

You may find this hard to believe but I can be a little bit intimidating myself. I just ask my questions and make it clear that I'm going nowhere until they have been answered. I think I said before that no doctor has ever tried to be silly and 'pull wool over my eyes'. I have always found them courteous and helpful.

Andrew

[Alison Fisher]

Sweet - I've never managed to meet anyone nice in waiting rooms. After the umpteenth time of listening to someone moan like crazy because they've been attending the eye clinic for a whole six months now and complaining that their appointment time was twenty minutes ago and they hadn't been seen yet I try and keep my head down now and not talk to anyone. I just want to shake people like that and remind them how lucky we are to have a health service. When I was younger I think I was 'picked on' by such people because they assumed that I was either there accompanying someone attending the clinic or just starting out on my treatment. I cut the last person who did that to me dead when I told them that at that point I'd been attending the hospital for eighteen years. I'd love to meet someone nice in a waiting room.

J - I have asked question after question over the years and rarely got more than either a sharp you don't need to know that or a shrug and an I don't know. I much prefer the docs who admit to not knowing. The last time I was at the hospital I ended up talking about parental expectations of what being a Brownie means. I have no idea how we got onto that subject.

Gareth - I had asked about KC returning and been told that the chances are very remote. I know it must sound ridiculous but after my grafts I wasn't sure if I was classed as 'cured' or not, and then I thought what does it matter, it's only a word. Anything could happen so there's not a single day that goes by that I take my grafts for granted.

I can't imagine wearing lenses again. Just the thought makes me shudder. I love being able to do something as simple as put my glasses on and see pretty well. I feel very lucky to be able to do that.

Hi Carol
There are too many presumptions made in the world.

I hope the rgp's continue to work well for you. After such a bad time with them myself I'm almost in awe of anyone who does well with them.

Do you attend the LRI? I'm up for coffee but only if the number 26 bus goes past your place (I don't drive).

[jayuk]

Alison

Can i just confirm; you have been told "You dont need to know that"....when asked a question?

Jay

[Andrew MacLean]

You must have been in the wrong waiting rooms!

I am shaken by the response to Jay. Next time somebody tells you "you don't need to know that" you respond that you will be the judge of the things you do and do not need to know.

If you ask the question, they ought to give an honest and intelligible answer.

Andrew

[Alison Fisher]

Hey Andrew - do you 'rent yourself out' to people to attend their appointments with them? I'm sat here grinning at the thought of the sight of you walking through their doors making consultant's knees knock.

Jay - I'm thinking very hard now and I can't hand on heart remember those exact words being spoken but pre first graft that was very definitely the attitude I met. They knew better than I did what the best course of action for me was and there was no way they were going to explain the decision process or the choices open to me. Hopefully it can be put down to them being too pushed for time. Looking back it's little wonder I didn't cope very well emotionally with the whole thing is it?

[jayuk]

Alison

Well, in all honesty that is still the case...I can still beleive this happens day in day out.......lack of People Skills and Ego I am afraid...and the Medical arena is full of egos.......

J

[Alison Fisher]

My keyboard is overheating.

Andrew, I quite literally was in the wrong waiting room once. After my first graft they booked me in to see the wrong consultant in out patients which caused lots of confusion and why are you here questions. I didn't know, I just turned up when and where they told me.

I had a very bad experience once with a doctor who had previously been friendly and approachable. Before I had my girls I asked him what the chances of passing KC on were. He launched into a very strongly worded and stern lecture about how KC wasn't that bad and I shouldn't even think about KC with regards the choice of having children or not. I wasn't thinking about not having them, I just wanted information. It really shook me up and it was a fight to hold myself together long enough to get out of there.

I've probably not done myself any favours by usually attending appointments by myself. My husband is very much like me and not much good at standing up for himself in such circumstances let alone me (but bless him, I wouldn't change a single thing about him for anything), my Mum couldn't cope with it and to this day my Dad goes off at the deep end about it all to the degree that I end up having to look after him and calm him down, so there really wasn't anyone who would have been useful to have with me.

Oh my, what a sob story. Someone get the violins out.

[Alison Fisher]

Alison

Well, in all honesty that is still the case...I can still beleive this happens day in day out.......lack of People Skills and Ego I am afraid...and the Medical arena is full of egos.......

J

Yeah. But there are also a lot of really nice people in the health service. I think because we only usually have contact with health professionals when we are stressed and worried it's far more likely that misunderstandings and upset will occur. We also tend to remember the bad things better than the good - I know I do.