Inherited Cardiac Conditions

[karenmac60]

Mr mac got a letter today asking him to attend the Inherited Cardiac Conditions Clinic, which seemed to suggest he had requested a referral to them. He had Hypertrophic Cardiomyopathy which is all under control and being treated by his cardiologist, but he was told to recommend that his sister get tests just in case as it can be genetic. She went for tests and got the all clear but she is a known attention seeker and started on that mr mac had to go and see her dr and she wanted to speak to the top consultant, and we think it is her that has requested this referral. From what I can gather it is for genetic testing and mapping to find the faulty gene responsible. But since mr mac is already being treated and since neither him or his sister have any children and are not going to have any - is this necessary? He's got enough hospital appointments as it is without putting himself forward as a guinea pig. Does anyone else have any experience of these clinics? Should he go, or just phone and tell them no thanks?

[bednobs]

refferal woukld have come from the GP, most likely his

[karenmac60]

Really? Cos his GP would normally discuss any referrals with him, and he tends to take a step back from getting too involved since mr mac has his cardiologist and renal consultant - they tend to work out things between themselves.

[karenmac60]

His sister had asked him to sign a release for his medical noted a few months ago, and that was for some sort of genetic counselling. He told her he'd sign it (she's quite formidable) but he didn't. Is there a chance it's her gp that has referred her and this is how it has all come about. He's wary of getting involved in case they start mucking his meds about - it took his own drs a long time to get the balance just right.

[society]

Perhaps Mr. Mac should mention his sister's concern to his cardiologist, hear what he suggests.

[karenmac60]

It was his cardiologist who suggest she get a check up. She seems to have blown things up out of proportion - especially since she was given the all clear. I don't see what the point is in determining if it's genetic - there are only the 2 of them and they are both in their 50s without children. The genetic line will die out with them so what does it matter as long as they are both aware of it and receiving the appropriate treatment?

[bednobs]

it might help further people's understanding in the future (for example which chromosome the "fault is on")
It could help epople in the future who ARE having kids i supposse

[karenmac60]

I realise that Bednobs, but given that she doesn't have the condition, no one else in the family has had heart problems and they only said it might be genetic I just can't see the point in dragging him to yet more hospitals for yet more tests. He has enough health problems without this.

[~Wingnut~]

I can totally sympathise with that Karen, when Mr Wingnut has to attend hosp appointments for things other than his renal clinic appointments he is really reluctant to go to them. He feels he has enough tablets, goes to enough appointments as it is, it's not because he doesn't care about his health it's just that he's had it all his life and doesn't want any extra than he needs to.
His sister should appreciate that he goes through with enough and if she is really worried she should talk to him about it and put her thoughts and fears to him but vice versa too.

[karenmac60]

Thanks for that Wingnut. I'm actually really annoyed about it - his sister has a habit of having fake health scares and the like. I think it's just attention seeking as Mr Mac has been ill for over 30 years and obviously got more attention than her. In the past 6 months she has told him she might need to start dialysis, which was then never mentioned again, she was in hospital with suspected dvt (again there was nothing wrong) and now this. His mum always gets rushed in with chest pains when she doesn't get her way, but there has never been anything found - she even told him she had cancer, which she didn't! The whole thing sickens me because they are both perfectly healthy, unlike mr mac and it's like they just want some drama in their lives.

[Sqad]

Karen....I assume that Mr Mac has been genotyped?
Mr Mac has no children and unlikely to have any for whatever reason.
Mr Mac´s sister has been genotyped and she does not carry the abnormal gene and in any case will not be having children for whatever reason.

If Mr Mac does not want to go......then he needn´t.

[woofgang]

Sqad is right, he needn't go but he might like to phone and ask what the point would be in case it might be useful to him...if the line dies out with him and his sis and it isn't a research project, the clinic might be glad not to spend the resource.

[bednobs]

sorry Karen, i know how hw feels. I feel there should be some sort of loyalty scheme at the hospital where i go (seemingly at least every month) I would have saved up enough points for a dinner service at least by now!
Dunno about you, but in our hospital the parking is Sugar too - there are FIVE disabled spaces and if your appt is down the other end of the hospital, there is a buggy service, but it stops at 3:45 which is no good for me as i tend to have my appts at the end ofd the day, so i can leave work early to go

[starone]

You don't have to do anything you do not want to karen. If you were knocked down and lying in the road with a broken leg and the paramedics wanted to pick you up and take you to hospital and you said no they would have to leave you there. Not a good example I know, but I am just trying to make a point.

[karenmac60]

Thanks everyone - I'd just got my knickers in a bit of a knot about it all last night. He tried phoning today but it just rang out so he'll try again tomorrow but he's not going anyway. Ta x