Hello everyone, I got a scare on Wednesday when I went for a routine echocardiogram (prior to bunion surgery next week as I said I had a leaky heart valve which had never caused me any problems and was very minor when they first discovered it about 10 years ago. To be safe they said they'd better check it before my op). However, on Wed, the valve is now quite badly "calcified"(has deposits on it making it more difficult to open/close), plus, the Echo technician told me I have another two leaky valves now! She said those two were very minor as yet but the calcified one will almost definitely need surgery in future for a valve replacement. As you can imagine,with lupus,we are all used to hearing about what other things are now wrong with us(e.g. kidney disease, osteoporosis,sticky blood or nasty side-effects from meds etc etc) but I really got a shock when I found out about the heart as I was almost sure it would just be the same as before! Has anyone else got any experience of this or other heart problems from lupus? Any advice or reassurance would be most welcome,thank you so much!
Does anyone else with SLE have leaky heart valves? - LUPUS UK
Does anyone else with SLE have leaky heart valves?
Hi.yes .in 2014 before diagnosis I had issues with my lungs which they couldn't find a cause.it put strain on my heart and put me into heart failure for a year. Echos showed regurgitation on my mitral and tricuspid valves.fast forward to Nov last year when a chest xray on hospital admission with breathing problems due to pleurisy showed my heart is enlarged. Waiting for another echo.i monitor my BP and keep stress to a minimum x
Thank you very much for your reply Spanielmadlady. Any other organ or body part is easier to deal with I think but when you hear it's the heart,it's a bit of a shock+a worry. I hope you get on ok at your next Echo. Take care.
Yes it is scary .they said to me try not to stress until we find out what wrong with your heart....hmm easier said then done .I hope you get on OK take care xx
Hi Whitemagnum I have sle and 2 leaky valves. Have an annual echo and they will operate when sufficient need. Been doing this for last 5 years now. Have some symptoms but not enough yet. To be fair I hav
Have a cousin with heart valve probs etc but he doesn't have lupus so don't know that it's connected. Sounds like you need to see a cardiologist asap. Good luck
Florence,
If he by chance has any symptoms of Ehlers Danlos, it might actually be , or might also be something I was recently diagnosed with via genetic testing called :
Loeys -Dietz syndrome. ( I have sub type 5 )
It’s a genetic connective tissue disease. The type I have, TGFB3, has an adult onset.
It is systemic, but really showed itself in vascular cardiac issues. Valve issues and aneurysms. ( my mom died of come with this.)
Autoimmune diseases are often present.
He has none of those. Lupus comes from the other side of my family but heart disease is on my mother's side
Thank you so much for your reply Florence91. That's good that they're keeping a close eye on your valves. I wonder why no-one thought to check up on my original leaky one! What sort of symptoms do you have on the 2 leaky ones at the moment? Do they just decide to operate when a valve stops working altogether or do they assess when the calcification is advanced enough to warrant surgery? Thanks again, take care of yourself.
I saw a cardiologist when the valves were diagnosed and I was breathless, worse with any incline, can't sleep flat etc. I also had lung function tests to check that too - also not bad but not right! It was a long story but since then I was put on perindopril to improve heart function and lower my blood pressure a bit - 5 yrs ago. And had checks since as I said. Aortic valve is the main problem and now moderately damaged. I am breathless on exertion. He said they would operate when severe and regular checks prevent a crisis. I only get the checks now with cardiac physiologist but will be referred back to him if things change.
I have lupus and also have a moderately leaky mitral valve.Long story but the valve issue was picked up about a year after the lupus diagnosis. The valve has pretty much stayed at moderate for 11 years at least. I did have one doctor who got a bit twitchy about surgery being needed, but a subsequent echo was ok. Echocardiograms are not an exact science! I have been told that the leaky valve is linked with lupus.
Yes, you definitely need to see a cardiologist!
Thank you very much marypw. I'm glad your leaky one isn't getting any worse at the moment. Hopefully when the report comes through,the cardio team will follow me up+the report won't just be sent to the surgeon doing my op! I'll tell my lupus consultant next time I have an appointment anyway. Thanks again, take care.
Hi Whitemagnum
I was a bit taken aback when my cardiologist suddenly declared I needed open heart surgery for one tiny narrowing of an artery that's usually stentable. The problem area is just too near a small artery branch where some plaque can potentially come away and block it causing some pretty sudden nasty problems.
I have some full on sticky blood too - and he doesn't like the idea of clot assisting stents much anyway.
I met with my surgeon not so long ago and despite looking like he wanted to cry from over work - ( unfortunately not joking - from Australia - our health care system has utterly buckled ) he was none the less lovely and very reasuring.
It's full on bypass surgery - but in open heart surgery terms it's a fairly simple procedure where he doesn't have to perform surgery on the heart itself.
Apparently it's not like the bad old days where open heart surgery was very risky - techniques have vastly improved - recovery times are shorter - and afterwards I should feel a lot better - be able to excersise - jog if I want to - and have a better life all round without the nagging fear of suddenly dropping dead.
I may even be able to say goodbye to what may have been misdiagnosed as chronic fatigue and POTs related to Lupus.
It was a shock at first - but overall I'm looking forward to a better future.
X
Wow Freckle1000 that's a shock indeed when you think a stent would be enough! I have sticky blood too so I probably need to be referred to a cardiologist so I can have some of my questions answered. I wish you the best of luck with your op, take care+thank you so much for your reply xx
Just a quick reassurance I had an echo done quite a few years ago and I had 4 leaking heart valves and a Bowing mitral valve + chronic pericarditis I'm supposed to have biannual echoes but obviously haven't had one for the last couple of years due one in June sometimes, but have been told that it's quite common to have leaking heart valves but like you say when people mention your heart you do get stressed I hope you take some comfort knowing that you're not alone
Thank you for your reply sunshine16, it is very reassuring to know about other people's experiences so thank you. When I first came on here I was asking about help for extreme nausea,then oral thrush,then peeing blood+now it's possible heart valve replacement so things definitely seem to be getting worse!! You gotta laugh or you'd cry!!Hope you get your echo in June+ all is as well as it can be. Take care xx
Hi, I just want to let you know that I have had a mitral valve problem and it has gotten worse in the last three years and his nail moderate to severe. I will be getting a TEE test on June 3 to find out if I need surgery. I was just told about a month ago that all of my organs have been affected by the lupus. I’ve had lupus for 42 years now and I have been in bed for the last 11 years 80 to 100%. I have SLE error unable to get rid of the rash outbreak. I just continue to pray that God will heal me and my body. I feel very alone in the last 11 years and my family does not understand how painful lupus and the other five autoimmune diseases that I have gotten in the last 11 years. I am here for anyone who is having an issue with their lupus and questions. I will keep you in my prayers. God bless
Hello victoriaserwinski, thank you so much for your reply. It is indeed a long and lonely road and my heart(leaky as it is! )goes out to you. I've had SLE for 32 years with lots of ups+downs but had to give up work about 6 years ago due to deteriorating health and now I not only suffer from all of the physical problems of lupus but feel useless,worthless and often hopeless so I hear what you're saying and going through when nobody really and truly understands what we have to contend with on a daily basis. Let me know how it goes with the mitral valve test. Sending you much love and many warm hugs xx
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