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.

.... really? Okay, that is très weird.

How kind of them!

Nephrogenic systemic fibrosis caused by Gadolinium occurred mostly in those who were on dialysis or had a GFR of under 60.

I can see why you would have some concerns, it's a shame that your cardiologists can't be more understanding.

Thanks sauvignon My GFR is better than that and obviously I am not on dialysis Maybe I am just super cautious!

Can you not speak to your nephrologists and get them to back you up?

I totally understand your concerns. If it was life or death maybe, but I think you should try and get your nephrologists in a dialogue with your cardiologists to find a better alternative IMO.

I have spoken to the nephrologist yesterday. He says he thinks my kidney function is good enough to have the gadolinium. I am not usually this worried tbh I have been ill all my life and am very open to new treatments etc This is the first time I have ever been nervous. It just feels wrong but they say that is not a good enough reason to not have it!

I'm a nurse and before CT scans with contrast we often give pre and post scan iv fluids or sodium bicarbonate to protect the kidneys of people at greater risk, so those with impaired function or who've had lots of scans in short space of time. Could your renal consultant recommend they do that? If it was me I would be very keen to know if it was a genetic thing or not for once and for all.

Thankyou That is interesting,I didn't know that! The more I look into it though the more I feel they are not telling me the whole story. I have a history of high BP and am immunosuppressed both of which are also increased risk for NSF.I do want to know but the thought of damaging this kidney is terrifying for me. I am going to email the cardiac centre in London and ask about not using the dye initially

I think it's important to know if it's genetic. I've known 2 people who died young of this condition and it it such a hard thing to understand how someone seemingly fit and healthy can just suddenly be here one minute and be gone the next.

However, I really can understand your concerns. If your GFR is good and your renal consultant is happy then maybe your should go for it. Especially as NurseRatchet said about the iv fluids pre and post scan. I'm a 2nd year student so not familiar with contrast and how it works (I've seen it being used once in a CT scan and didn't think to ask and had radioactive contract myself once for a bone scan is this the same stuff?).

My GFR is only 74 so not that far above the limit but that was tested just before I found out I had kidney stones so that might have affected my result depending on where they were (I passed them before my CT scan). I'd probably have similar concerns as I'm all up for protecting my kidneys now!

One thing that was pointed out to me recently when ds had a medical procedure that was for interest rather than to help or treat him now, is that the NHS is going to change so much in the next 10 years that we shouldn't take for granted that we will be able to do the same investigation at any point in the future IYSWIM

Thanks for all the advice its great! I also have stones but have passed one of them. The other option is for my son to continue to have echos.The last person outside my hospital who looked at my heart was convinced it wasn't genetic due to family history but it isn't definite but nor is the MRI. My gfr is 61 so borderline. I am going to have to think about it long and hard. The condition that gadolinium can cause is awful and my life is hard enough!

So glad I only have one dc!

NSF is unbelievably awful and so little known,which is why the cardiologists may not understand.
Keep asking questions OP and don't be fobbed off.

I hope you get some clearer answers soon Noddy. It's not nice when you don't know what to do for the best.

Keeping my fingers crossed for your DC.

Thanks. I have emailed the consultant in London to literally beg him to do it without contrast initially. I have several of the indications for more at risk imo and won't be bullied. My ds could be re echoed! That would give us peace of mine. No one in my family has tested positive and no young deaths so am trying to be optimistic. The likelihood of this being a result of longstanding hypertension related is high plus I had a heart attack aged 19. I was diagnosed over 13 years ago as I started feeling breathless and I wish they had done all this then!

Good luck!

Thanks xx

Hi Noddy

So sorry to hear this is happening to you.

I am really surprised no-one thinks the heart problems are caused by years of dialysis. DH has tachycardia and has had two heart attacks and constant hypertension, caused by the renal failure and years on dialysis. He still gets periods of hypertension which, whilst controlled with meds, hasn't really improved since the transplant.

When I was admitted, there were two women who also were post transplant who had cardiomyopathy. One of the ladies had a failing kidney and heart issues, and they did this process with the dye but with the pre and post saline. Her kidney didn't make it, but then her creatinine was through the roof (500+) so it was going to go anyway.

What's your creatinine currently? How is your potassium (this is always one to shoot up if DH is unwell) ?

I don't disagree with refusing medical procedures, especially if the cardio consultants aren't taking into account your renal history, so in your case I would push for this procedure to be done without the dye if you are seriously concerned, or see if they would compromise with the pre and post IVs fluids?

I really hope your MRI gives them some clear answers and fingers crossed tis not hereditary. I will also send you some brilliant kidney vibes and hope that it continues strongly for you for at least another ten years!

At least!

Sorry to come back to this, but just spoke to DH (similar position, as you know). He said he'd point blank refuse the MRI,

They actually offered him an MRI after his last hypertensive episode which resulted in hospitalisation. He refused on the grounds that his kidney is more valuable than an investigative exercise. If its not helping in the long run please don't risk it. If your DS has had two clear echos and isn't symptomatic then it does point towards yourpoor health as being the reason for the heart issues. The links between renal failure and cardiac issues are quite well documented (but only if you speak to the renal team - we've never really dealt with cardiac consultants).

Also if the kidney does get affected, the heart issues will make going back on dialysis much harder, due to the effects of dialysis on the heart.

It has really annoyed me that they would push this on you without thinking about your kidney.

Thanks reindeer and sauvignon. My creatinine is currently stable at 90.I have had this transplant 13 years and I still remember being on dialysis like it was yesterday . My heart problems are almost certainly caused by the heart problems I had in my teens. It is very common to have heart muscle damage and be asymptomatic for years which is the case with me. I haven't been this stressed in years. I feel bad as I walked out of the heart hospital in 2011 as they promised me no dye and when I got there they tried to force it on me. I had a uti at the time and was feeling ill so I just left . Then my cardiac guy said it was safe so i said ok book it but now I am scared again. I know they will be pissed off with me but ????The NSF can show up up to 7 years later and I know myself I would be waiting and watching and have no peace. I am stable atm in all ways and I suppose that is something I don't want to jeopardise

Reindeer about 3 yrs ago the heart team had a top echo woman from London come and see me and she said she thought it was blood pressure related. She said if I had just walked in and she scanned me with no knowledge of my history she would have said this is someone with previous renal problems! I think it is just interesting to them but thats it. If they were worried about ds they have had 13 yrs to do this

I'm not medically qualified but my gosh the amount of renal patients I've come across with some form of heart problems is quite high.

Have you always had renal failure? You mentioned the heart problems started in your teens, and I'm wondering if that it was a small problem that has been exacerbated by years of health related hypertension.

Alternatively could you do an MRI on your DS? Assuming his kidneys are well there are very little problems it could cause him and may rule any problems regarding his heart if it's genetic, like they seem to think it is.

And wow at 90 creatinine ! For a twelve year kidney that is fantastic. Still would be best to keep the kidney at its tip top best anyway.

Please take it without dye if you too are concerned, if your not actually bothered about having the procedure then don't have it done. You've have enough medical intervention in your life, without them using you for investigative purposes as well.

All the best to you m'dear, please let me know what you decide to do.

My renal problems at 18 caused high BP and so my heart was damaged then but it was not giving me any problems until after my 2nd transplant. My son could have another echo as that is the standard test for cardiomyopathy if he had it it would definitely show. I am very lucky to have that creatinine i know! It was 70 until 4 years ago when I kept having infections and I told them I thought it was stones but they did u/s and they didn't show Then I had a CT scan and there they were but the damage was done. I have a feeling about this and I am not a particularly whoo person iykwim. Because my son has shown no signs and has had 2 clear echos the hospital never mention him much but I am going to ask for him to have an echo. They do think my renal problems have caused it but on an echo it looks like cardiomyopathy (size structure etc) but the echo woman seemed convinced. They have never had someone without a close relative with it. All my relatives are still alive and grandparents died very old on both sides.