To say no to this

[noddyholder]

My cardiac doctors want to do an MRI. I have had a renal transplant which thankfully is still working even though it has a few stones in it and the function has dipped slightly from when it was done (2000). The MRI requires a contrast dye which is a known kidney toxin and can cause renal failure in anything but the best functioning kidney. I cannot seem to get them to accept how scared I am of risking it. The cardiac team are dismissive of my worries and aren'rt offering me the scan without the dye even though that is possible. They have said it is purely for their information and will have no effect on the path of my illness or treatment. I just don't want to risk it and they are getting very p'd off with me and say I am over reacting even though they can't deny the stats and are unable to reassure me.

[Nanny0gg]

Can you get in touch with the consultant who dealt with your kidney issue for a second opinion?
He would add weight to your argument, or reassure you.

[wannabedomesticgoddess]

I agree. Get your consultant on board. They should hopefully listen to a kidney specialist.

[noddyholder]

Thanks have emailed him today and so fingers crossed! There is no way he would want me to risk my transplant I might never get another!

[Sheena99]

My mother had exactly the same problem, her cardiac team were hell bent on giving her an MRI, she had to call her renal consultant to back her up. It seems only they're only concerned about their own area, they don't mind if it's another organ that kills you, not their problem.

[ipswitch]

You poor thing. What a worrying position to be put in by the so called experts. This is really not a good example of holistic medicine at all.

"They have said it is purely for their information and will have no effect on the path of my illness or treatment." Its your body and you are right to be looking after it ( and your new kidney) so very carefully.

Hope you feel better very soon.

[Oldraver]

If its just 'for their information' I would decline it. They sound a bit forcefull bullying and to me it doesn't sound like thye actually have your best interest at heart. It doesn't matter what you reason for being apprehensive is (and you have a very very good one). They should take that on board and work round it

[noddyholder]

Well my renal consultant has phoned and says he has never seen any damage in someone who has good function (like me) He has no opinion on the validity of it in terms of my long term care. He thinks the gadolinium is safe for me but I am still unsure.

[chocoluvva]

When I've had MRI scans they've done blood tests to check that my kidney function was up to the dye.

[lljkk]

Depends why the MRI would be so valuable. What happens if they don't do the MRI?

[noddyholder]

Well I was diagnosed with cardiomyopathy in 2001. because I have had kidney problems it was very difficult for them to tell whether all my ill health had cause heart damage or whether I was born with it. There are no cases of sudden death in my family going quite far back which makes some doctors think its residual damage but they are not 100% I have been on meds all this time and am stable. My cardiac guy just suggested it as it was available and I thought it may be useful to have a further look before I knew about the dye. My renal consultant thinks my renal function is good enough but I am worried as its the only kidney I have!

[noddyholder]

If they don't do it I carry on as I am. The one reason I was tempted was to see if they could tell which type it is They are not sure they can without doing it. But if they could it was stop them having to re test my ds. He is 19 and shown no signs.

[chocoluvva]

Do you feel your renal consultant is generally risk averse IYMWIM?

Could you get the opinion of a second consultant on the risk of the dye.

[lljkk]

I think your DS would be best tested separately, anyway.

"may be useful" sounds entirely optional given you are stable and have extra risks to juggle.

What would they do different in your treatment if they knew that you were born with this condition, or if they knew that the kidney problems had caused the heart damage?

[noddyholder]

Well if I was definitely born with it my son will continue to have the chance of developing it and if it was caused by blood pressure etc over the years he would at least be in the clear. My renal consultant is generally excellent but I have never been in this situation before He says he can assure me my function is good enough to withstand it but that makes me nervous too! My treatment will remain unchanged because they tried everything when I was first diagnosed and this is the only protocol that worked and there has been no progress drugs wise since then. I have a renal appt 2 -3 weeks before the scan is booked so may try and see another consultant then but tbh my bloke is top dog. There is an element of them just wanting a look as I am a mystery to them but I am not up for being a guinea pig.

[lljkk]

Sounds like it's really your son's call then. He doesn't have a dodgy kidney so safer for him to get tested. Even if you didn't have the heart problem he could still have a funny hear or develop one, so there is no guarantee for him, anyway, no matter what you do.

[chocoluvva]

I sympathise. It's horrible when you're unsure about the medical advice you're given. I suppose if a second consultant advised you to have the scan you might feel more confident.

Do you think "might be useful" means "just to be on the safe side/rule out unlikely possibilities?

[noddyholder]

No that doesn't make any sense! If my heart is the genetic one then he has a 50/50 chance of developing it. He won't suddenly develop it if mine is caused by years of high blood pressure and dialysis. He has been tested twice and its been negative. If my heart doesn't show definitive HOCM then my son will no longer need testing in his life.

[noddyholder]

choco that is what I am going to do. I think they are just flummoxed as it is very unusual to have HOCM without at least a few family member who have dies young and suddenly. Looking at my family tree and ages of grandparents when they died etc has not been consistent with genetic version but my scans etc all look like it (and my symptoms) My son has had 2 echos both clear I don't want him involved in this unless necessary

[Shelby2010]

If it will not change your treatment & there are potential risks, then I would say No. Or that you don't want to do it now but may consider it in the future.

I can see that it would be a relief if you could rule out your son having the condition but I don't think that outweighs the risk to you.

[lljkk]

there are way too many maybes in this decision. You've worked out for yourself what to do.

[noddyholder]

I haven't actually!

[lljkk]

Going ahead with this test would mean
no benefits to you,
likely small risks to you and
marginal possible maybe benefits to your son.

Seems pretty clear cut decision to me.

[noddyholder]

Oh I missed the insult on my own thread and by a new poster or a name changer Must do better Igor

[noddyholder]

OMG Igor just pm'd me offering me his kidney