Heart valve disease

[Romajade]

having symptoms of congestive heart failure two months ago ,hqving all the tests and on medication furomeside and ramipril for having rheumatic fever as a child and not known about it till now I have to go to the hospital for angiogram as something wrong with two if my valves is this serious as ive been told nothing really ive been down over qll this xx

[Hidden]

Hello

I suppose until they have had a good look they may not be able to tell you anything but the angiogram will and then they will tell you more

Valves can sometimes be repaired if needed and in worst case scenarios replaced but do not jump to the worst case scenario that was just to try and let you know that anything to do with the heart is something none of us want to hear but nowadays the things they can do is so advanced unlike it used to be

The waiting is always the worst but try and put it to the back of your mind not always easy but tell yourself I will know what if anything they need to do once I have had the angiogram

Let us know how you get on x

[Anon2023]

hi. I discovered I had heart problems after I started to experience palpitations and developed a cough that wouldn’t go away. I was subsequently diagnosed with severe mitral valve regurgitation. I was told that I’d had this condition for a long time without knowing it and that there was evidence that I’d suffered rheumatic fever as a child. Like you, I had no idea and neither did my family. While I needed surgery to replace my mitral valve I was told that the prognosis after surgery was usually excellent. Prior to surgery I’d been put on furosemide and I think this is normal. I started rampiril after surgery. Your condition may be at the stage where surgery is not required and, you may never reach that stage. Valve problems can take years to develop and yours might be minor and not requiring treatment. If you do need surgery please do not worry, I’ve done it twice now and if I can do it, anybody can. Do yourself a favour and don’t Google. It’s full of out of date information which will scare you silly. Stick to sites like the British Heart Foundation and Pumping Marvellous. I’m happy to provide you with any information about my experiences but you need to speak with your gp and cardiologist to clarify exactly what is going on with your heart valves. Try not to worry it may not be anywhere near as bad as you are imagining. X

[Romajade in reply to Anon2023]

hi I had symptoms inin june of breathibreathing problems wen lying down and had wheezy cough for 6weeks before tthat mucus that had blood in and thenthen white foamy mucus ,feet and ankles had swelled later had blood tests and echocardiogram and found out i had high blood pressure and two pints of fluid s on each lung then another test and then spoke to cardioligist who said i had rheumatic fever or scarket fever as a child qnd never kbown qbout it as its rare valve disease ive been diagnosed with I gogo inin hospital for pre op assessment next week then week after getting a tube in my iwrist or top of my leg to put sonethung un for sonethung to do with ineone of my valves as two valves are not working im still confused over this xx

[Anon2023]

hi. I also had blood tinged mucus and it was because my lungs were struggling due to the pressure that my heart was placing them under. After the valves were replaced (mitral and tricuspid) my lungs returned to normal. Your symptoms sound like mine. I had a ct angiogram where they injected dye into my wrist and then did a cat scan. It was painless and is done to check for blocked or narrow arteries. It sounds like they put you on furosemide to get rid of the excess fluid in your body. There are many people on this forum who have experienced valve disease and fortunately it is treatable. You need to ask which valves are struggling such as aortic, mitral or tricuspid. Next week they should also be able to tell you your treatment options. Please try not to worry, I know you must be feeling afraid but there have been excellent advances in cardiac care and you will be in safe hands. Xx

[Romajade in reply to Anon2023]

thanks for advice im on medication as symptoms ive had twice in last few month are gettting worse im having some sort of keyhole surgery i,breastbone to do something to one of my valves as medication is not gonna work in long run so surgery us needed ive been told

[Larneybuds in reply to Romajade]

Good morning....I am still in hospital from having mitral and tricuspid valves repaired which was a fantastic result as initially the mitral valve was being replaced. Valve surgery is fairly common.....I didn't realise so many people have it!!. The staff will guide you through all your tests...don't be scared ....mine were painless. Obviously everyone is different but I looked at every test as a step nearer the solving of the problem. If you want to private message me to find out anything, please feel free to do so. All the best x

[Gemini1966]

Hello Romajade

Your post rang home as had Rheumatic fever and Scarlet fever in the 60’s as a very young child

All my life I’ve ‘lived’ “ with symptoms which was diagnosed as asthma

I had a TIA late 2020 which showed my heart function wasn’t right

Following April I had 2 valves replaced!wham bam no messing about !

Yes I’m on warfarin for the rest of my days but so thankful to be able to live

I still can’t believe I lived with this for 50 years,raised 5 children and have 8 grandchildren a lot to live for

All the very best please keep us informed on your journey

Louise ❤️