Anyone ever have heart valve issues because of scleroderma?

[bengali]

I learned today that I have a moderately leaky heart valve. Which one, I don't know yet, just 'not severe enough I'll look into booking you into hospital right now to fix it, but something that will definitely need looked into and likely fixed.'

I was referred for a diagnostic echocardiogram by my rheumy, see them again in a week and a half, then referral to a cardiologist after, but how quickly, ??, but at least I'm hoping for more info when I see the rheumy.

Not 100% diagnosis, but rheumy wrote in report last time 'very likely scleroderma'. And I know scleroderma can cause cardiac and pulmonary problems, but I'm not seeing anything specific about valve problems specifically, so I am just wondering if any of you have?

And, if any of you have had to have valves repaired/replaced, how do you get around or have you had problems with extra scar tissue?

[MDulle]

Hi Bengali,

I very recently saw my cardiologist who ordered an echocardiogram and a scan. They found a leak on the mitral valve. Right now we’re just monitoring the situation.

I’ve had scleroderma for more than twenty years - confirmed after I’d had a heart attack in my thirties, but this leak is something new (I think,). My condition, like many others, flares up and then stabilises, so I’m not too concerned at this point. I also have issues with my lungs, and digestive systems, and some years have been much worse than others, but I try to keep positive and not panic when things go awry. Take one day at a time, and be sure to get good medical support. Life is precious!

Blessings.

[Lupiknits]

Sorry to be a bit late in replying but back when they decided I had systemic sclerosis ( but were vague) I had a full-body MOT which revealed a heart murmur. This can’t be bad ( one hopes) because it’s just checked every year.

I’m so sorry I can’t help on possible surgery but I do hope things get better for you x

[cowhide in reply to Lupiknits]

One of the things I console myself with is, OK I have systemic sclerosis which is a bit of a bummer. But on the other hand I automatically get fantastic screening with 8 weekly bloods, urine testing and blood pressure checks, annual lung function tests and echocardiogram.

So, if I develop any other 'funnies' in those areas, even if they are completely unrelated to my scleroderma, it will get picked up and my consultant is happy to refer me on quickly if anything untoward pops up. What luxury, given the wealth of other conditions that other people often live with for a long time before they get so bad that they seek assistance. First I ever knew I had a mild heart murmur was when my rheumy did my baseline checks. I have a very slight aortic enlargement and also bilateral atrial enlargement which has been investigated but no reason found. So I'm a lucky girl because it may have nothing to do with scleroderma but it's been spotted and is being monitored which is very reassuring.

[bengali in reply to cowhide]

Good way of looking at it, definitely. Just seems as soon as you get used to one thing, there's another popping up. Just want a breather for a bit, lol

[Lupiknits in reply to bengali]

A very good way of looking at it positively. One of the best things I’ve done is agree to take part in a research study after being asked. So far, they’ve happily referred me to other consultants to check things out, and I see them every three months. This is in exchange for agreeing to all my tests, scans etc to be shared with universities in other countries.

Their blood tests have alerted my GPs to undertake further tests and load up my vitamin D.

They also referred me so that my dry mouth and eyes have been confirmed as Sjogrens rather than brushed off as “the meds”.

Thank you for making me see the positive!

[bengali in reply to Lupiknits]

Forgive my ignorance, but what is a mot? But I don't have much info really just now, just doesn't seem as if the valve issues are really common with scleroderma, hence asking 😃

[Lupiknits in reply to bengali]

An MOT is an abbreviation for “Ministry of Transport “ what we call a legal annual overcheck of a car. If it fails the test, you have to get it fixed. I’m using the term in a general thorough body check up!