Avatar universal

What are the key symptoms of heart failure?

Hi everyone, I've Had restrictive cardiomyopathy with limited activity since I was 8 yrs old. I'm now 26 and just 3 months ago was given a diagnosis of congestive heart failure and arrhythmia. My activities are even more limited now, even walking is difficult.
I take Bumetanide 4mg but it hardly makes me go to the bathroom (3x a day) however in the 3 months I've Had swelling in ankles, feet and legs around 4 Or 5 times. When I go to a&e they tell me there's no fluid seen on Xrays. Other symptoms alongside swelling are tense and protruding stomach, nausea, vomiting, cough, feeling full, loss of appetite, dry mouth and heavy breathing when lying flat (which gets better when I prop up on 3 pillows).

I see my cardiologist in 2 weeks so till then if anyone can answer would be great.
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Avatar universal
Just to add since I was 8 up until 4 years ago they always said it's hypertrophic cardiomyopathy then before getting the ICD implant I want to London to a specialist for a second opinion and he made me aware that he believes it's restrictive cardiomyopathy.
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Have you had a proper left and right heart cath with bolus of fluid?
That makes absolute sense to me. Hypertrophic cardiomyopathy in severe cases (which you probably have if diagnosed at 8, my daughter was first diagnosed at 6) is basically a form of restrictive cardiomyopathy. When the HCM walls get to a certain thickness, they can not stretch to allow the chambers to fill with blood, they become restricted in their ability to do that. Have you had genetic testing done and do you have several electrical problems with the heart as well or just the wall thicknesses? (electrical problems from the age of 8? Such as WPW?)
Avatar universal
Restrictive pericarditis is one of the causes of cardiac failure that can be fully cured.

Are you in the usa?
Helpful - 0
No, I'm actually in the UK but this is the only forum I could find that was helpful.
ayl291, just a note....he doesn't say he has restrictive pericarditis, he has restrictive cardiomyopathy. To my knowledge you would not remove the pericardium with a restrictive cardiomyopathy which severe hypertrophic cardiomyopathy basically is.
Your absolutely correct.  I don't know how I misread that.   My apologies!
Avatar universal
Did they remove your pericardium when you were 8?
Helpful - 0
No they didn't, I did however, have an ICD implant in early 2014 forgot to mention that earlier.
Hi I just wanted to Grendslori stated that I was hasty in pressuming you had constrictive pericarditis causing the restrictive cardiomyopathy.

However that is a fully treatable condition... worth ruling out.
ayl291, I mean no disrespect, but realistically how could this be a constrictive pericarditis when she was diagnosed at the age of 8 and is now in her mid 20s. I would have thought that if that was the diagnosis, they would have figured that out a long time ago, either with it getting worse as a pericarditis or with Mona becoming a lot sicker over time. Educate me.  
Constrictive pericarditis is typically inflammatory... it can actually wax and wane in severity.

I've seen it.

It's rare but can happen.

I wish medicine was straight forward but honestly the truth is... it's more unclear than clear...

It's like is light a wave or a particle bc the whole both concept doesnt really work lol
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