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[Paleowoman]

Hi,

I was very happy to discover this forum while doing an internet search for the effect of calcium on aortic valve calcification.

I live in the UK. I am diagnosed with bicuspid aortic valve with moderate stenosis. The BAV was first 'heard' when I was 25 and I am now 57. I now get yearly echocardiograms but the cardiologist hasn't told me the valve area or size, I'm only told the pressure gradient which is now 43 mm/Hg. I had a CT angiogram a couple of years ago which showed the calcification on the BAV, but no calcification in the coronary arteries. I've no idea when I will have to have the valve replaced - I find it quite stressful this not knowing. I seem to live from one yearly echo to another. I take prescription omega-3 fatty acids (Omacor) in the hopes that it will help reduce any inflammation.

I have also been diagnosed with osteoporosis, hence my needing to take calcium and my concerns about it and aortic calcification. I'm prescribed Strontium Ranelate for the osteoporosis. I also do high intensity SuperSlow weight lifting to help increase my bone density and also for my general health. Also walk two or three miles every day. I feel very fit.

I also have diabetes, I'm atypical type 2, atypical because I'm thin and not insulin resistant. I keep to a low carb Paleo diet for the diabetes and take Repaglinide.

My cholesterol levels are quite high: total is 7.1 (274) but I do not take a statin because my profile is very good: HDL is high at 2.7 (104) and triglycerides low at 0.5 (44). My endocrinologist and cardiologist are okay with my cholesterol

Anyway, that's me...feeling stressed about surgery even though it may be some years away and doing my very best to slow down the progression of the stenosis even though no one in the medical world seems to know how to !

 

[Ross]

Welcome to the insane asylum. Pull up a straight jacket and have a cookie.

Calcium supplements have no bearing whatsoever on additional calcifaction of the valve, so don't worry about that. The rest of your worries, many are in the same boat. No one knows if or when the time will come to replace the valve. You certainly don't want to do it just to do it. You also don't want to wait until the heart is being damaged either. Getting those yearly echoes are the best thing you can do right now.

 

[Superbob]

Welcome indeed to the funny farm -- they keep promising cookies here but I haven't seen any yet.

Your profile is similar in some respects to mine. A doctor detected my murmur when I was in my 20s, I was monitored off and on -- finally with 3-to-6 month echos in my 60s, and finally had the combined aortic root/valve replacement at age 63. I also share the type 2 with you (aren't we lucky?). Sounds like you are working to keep everything under good control.

Anyway glad to have you here. Hope you will post often and let us know how you are doing and ask questions of the friendly and well-informed folks here.

 

[skeptic49]

Welcome to the forum and to the BAV users club If you have copies of your echo reports and can post some of your other numbers then we can have a better idea about where you are in the progression of your BAV disease. BAV is thought to be a connective tissue disorder that can manifest itself in dialation of the aorta, etc. Do you know if you have any aortic dilation? Once again welcome, and I'm glad that you are very active...usually a good thing!

Best wishes,

Jim

 

[Luckyguy17]

Paleogirl,

Welcome to the forum and thank you for posting a good profile. Am 57 next month and my diagnosis of murmur and BAV is only about 5 years ago.

As cardilogist told me some years ago, in one of our 1st meetings, that with echo and tests, "he would likely know before me" when surgery was required and he had told me in early days that 5-15 years was the horizon, turned out to be a little less than 5, which i attribute to pressure cooker job and very active lifestyle. Am impressed that you have done 32 years since murmur discovered...seems an awfully long time and your lifestyle must have helped with longevity with slow progression of murmur and calcification.

For me when Cardiologist meetings went from yearly visit, which became every 6 months, quarterly....to it is time and continued denial on my part, because i did not fell sick enough for OHS.

Sounds like possibility/probability of AVR is high, fear is normal, but do not dwell on it, prepare instead, there are many things you cannot control and you need to rely on professional assessment and do keep an eye out for the symptoms

all the best

 

[ARGreenMN]

Hi Paleo. I'm now convinced (after being in this forum for 3 months) that the cookies are a scam. I wouldn't keep checking your inbox every day (like I did) for cookies to arrive... Everything else in here is very real though

Your profile is somewhat similar to mine too (minus the diabetes and osteo, and except that I recently did have to go ahead and have the surgery). My BAV was also diagnosed early in life, and now that I'm halfway through it (yep, I'm planning to live 'till I'm 98) I finally had to have the surgery 6 wks ago. But like you, I was going in for annual echos the last several years. I just got my records from my last echo (which you might want to do as well). My aortic valve area was .76. I don't think that had changed much over the last few years (but not sure since I only have the most recent test). Had been told for a while that I had moderate aortic stenosis and the most recent test results say the same. In other words, not much changes in my echos the last few years. My cardiologist kept telling me he goes more on symptoms than echo results, unless there's some drastic changes in your echo from year to year. So when I told him back in March that my symptoms had gotten worse the last couple years (shortness of breath doing things that didn't used to cause it, back/chest tightness, light-headedness) that's when he decided to send me in for an angiogram. Good thing - because the angio showed a mean gradient of 85 which is one of the highest he's ever seen. I guess that's what convinced him more than anything it was time for the surgery. And when they got in there, they found my valve was extremely calcified, and the calcification had even started going up into my heart (no permanent damage though - thank God!). But those are my results, not yours, so your mileage may vary. The main point is - unless/until you're having some symptoms, it's probably not worth getting all worked up about. Just keep going in for your annual echos. And also keep in mind, if/when you do need the surgery, it's nowhere near as bad as you're likely thinking it is. Read some of the posts from those that just recently went through it, including mine, and you'll see what I mean. Best of luck and let us know if other questions (keeping in mind most of us are just normal people, not in the medical profession). Oh, and staying healthy/active is a huge key to making the surgery (if ever needed) go a lot smoother, so keep it up!

 

[Paleowoman]

Thanks for the warm welcomes !

I haven't got any echo reports - I think I should have so I would have more numbers to post. I've just got copies of the letters my cardiologist sends my GP. Three years ago he wrote that "the left ventricular size and function are entirely normal. Ejection fraction is estimated at 76%. The aortic root dimension and left atrial dimensions are also normal." And then each year he just gives the pressure gradient which rises each time by 3 or 4 mm/Hg and now is 43 mm/Hg

I'm planning to live till I'm 98 too ! But the idea of having the aortic valve replaced and then replaced again and maybe again - I mean we're never free of this are we, even if you get a mechanical valve then it's warfarin for life so you're still monitored.

Whenever I mention symptoms to my cardiologist he fobs me off - I say I'm tired and he says it's due to this or that but nothing to do with my heart. Well I hope so. I'm not so good at endurance exercise these last few months, by that I mean cycling or climbing stairs, I feel weaker than I used to yet I know I am 'fitter' and my muscles are much stronger, I know because I have increased the weights I lift a lot, so I think it's my heart but how to tell my cardiologist ? He just thinks I'm an 'anxious patient" :-(

I forgot to mention that I also take a highish dose of vitamin D3, currently 2000IU per day, was 4000IU per day, principally for my heart as I read how good it was for the heart a couple of years ago on Dr William Davis's heartscanblog. Vitamin D is also good for osteoporosis of course so it's curing two birds with one stone...I hope. I get my levels of 25(OH)D checked regularly, they are currently 150 nmol/L or 60 ng/ml in US numbers.

 

[ARGreenMN]

Don't be afraid to try a different cardiologist. There is huge variation between different doctors. Find one you're comfortable with, and doesn't 'dismiss' your symptoms. On living to 98, I chose mechanical so (hopefully) I only have to go through this once (even though, as we've mentioned in here over and over, the surgery itself isn't usually all that bad - it can get worse later in life and after you've had one or especially two of them). And yea, I'm on Coumadin, but it's not a big deal at all - there's lots on here who will echo that too. There's a few on here that have been on it for 30+ years, and haven't had any issues. I've only been on it for 6 wks now, but it's really been almost a non-issue. And, by the way, when I first came into this forum, I was leaning heavily toward a tissue valve - many in here, and my surgeon/cardiologist talked me out of it. And I'm glad they did! Of course there's lots to consider, and some of the considerations might be different for girls than guys. One thing I didn't think of, so will mention, if you ever plan to get a tattoo - you might wanna get it now! I guess some artists won't do them on people who are on Coumadin.

 

[Paleowoman]

I will try and get a different cardiologist, Andy, though doing that is more difficult in the UK. Thanks for the encouragement !

 

[Ross]

I mean we're never free of this are we, even if you get a mechanical valve then it's warfarin for life so you're still monitored.

Hon I hate to tell you this, but once something is found wrong with your heart, your monitored for life regardless of what valve you choose. If taking Warfarin bothers you, I suggest you read up on the REALITY of the drug in the anticoagulation forum, starting with all the stickies at the top. There is way too much myth circulating about the drug and what most everyone hears, scares them away from it. Once your on it, you'll start laughing at some of the ridiculousness of it all. I'm for anything that will reduce your chances of reoperations, though there are no guarantees either way.

 

[Paleowoman]

Oh goodness Ross - this is scaring me more. I've been reading the sections on valve replacement options and pre and post op. Goodness - the mechanical valve and noise - I am thin and probably always will be and I have hypersensitive hearing - it's been measured and commented on by ENT specialist. I get pulsitile tinnitus from time to time in my left ear which means I hear my heart beating loudly in it. It would really bother me to hear my heart beating more.

Reading the posts, there seem to be quite some problems post operatively - more than I'd like to read about ! So I won't read them for now !

My cardiologist told me once that they may be more likely to do the minimally invasive type of valve replacement more often soon, the type without having to do open heart surgery - fingers crossed that that technique becomes more common and has good results.

 

[Ross]

Thing is, you might go years and never need anything done. You could be one of the lucky ones, but should it turn out differently, your doing the right thing by researching everything now.

Most of us cannot hear our valves. Some people do, but no one knows who can and can't until its done. Body accoustics are different for everyone, even skinny folks.

 

[Mentu]

Paleo, don't spend your time worrying about the complications of surgery. You may never need it and if you do it is usually not the traumatic experience that it used to be, especially, when you are in otherwise good health. It is troublesome to learn that there is a problem with ones heart. That happened to me 10 years ago. Like you, I didn't pay a lot of attention to the results of my echo-cardiograms because every year my Cardio said "things are fine; see you next year...". In 2008, I began to notice more fatigue and occasional shortness of breath. This suddenly worsened in July of 2009 when an echo-cardiogram indicated that I had moved from moderate to severe stenosis. This was confirmed three weeks later by a heart cath. I then met my surgeon and a month later was home recovering with my new valve. So, I would say, get copies of your tests and learn how to read them. Pay attention to your body and if you feel you are having symptoms be somewhat more insistent with your Cardiologist. I think early symptoms are often dismissed as something else; you know better than anyone how your body performs.

When you speak of the pressure gradient of 43 mmhg, is that mean or peak. Just before surgery my mean pg was 65 mm hg with a peak of 127 mm hg so you see it is important to know what the number measures; 43 peak is a lot less significant than 43 mean. The three things that seem to be most significant are pressure gradient, valve area and left ventricle hypertrophy. It would be more informative if you ask your doctor for copies of the past several echo-cardiograms so you can clearly see the trends. As you will read here, there are a number of people who never experience strong symptoms before surgery which is why it is important to follow the test results. Even my own cardiologist downplayed my symptoms 6 months before my AVR.

So, don't panic. It sounds as though your condition may not yet have reached a point where you need to be concerned about surgery soon. That can change but it will not be a surprise if you stay informed. Let us know how we can help.

Larry

 

[hensylee]

welcome - you'll probly spend lotsa time in here for awhile and we welcome you w/open arms. You have found the best spot to be right now. We walk right along w/you all the way. Blessins............

 

[Luckyguy17]

I will try and get a different cardiologist, Andy, though doing that is more difficult in the UK. Thanks for the encouragement !

I'll echo the cardiologist change, similarly difficult for us in Canada, ....it is an effect of our "free and universal" medical care.
Ross is truly right on Coumadin, i have been on the same 5mg daily dose since leaving hospital with INR in perfect range...so the Coumadin regime can be no big deal, pop one pill a day and eat what you want, just to be careful of excess green consumption all at once....the bi monthly time for blood tests (quite a few hours here) can be a pain and likely the reason why many choose to equi themselves for home testing...at least Coumadin is really cheap.
But Paleogirl, again the reality is you have had an early diagnosis on a murmur, education, looking for symptoms and regular follow up, is your current job, do not dwell on the maybe's, it is energy sapping

 

[Paleowoman]

I think I"m just going to have to be more pushy with the cardiologist in asking questions and getting more information from him, as you say, in countries like ours it's difficult to change doctors.

No excess green consumption all at once ? I have to eat tons of greens for the calcium ! But then again, I think I'm more likely to be looking at having the replacement in my 60s so they probably wouldn't think of a mechanical valve - deffo the noise would put me off...been reading other posts on the forum !

 

[Bill B]

Oh goodness Ross - this is scaring me more. I've been reading the sections on valve replacement options and pre and post op. Goodness - the mechanical valve and noise - I am thin and probably always will be and I have hypersensitive hearing - it's been measured and commented on by ENT specialist. I get pulsitile tinnitus from time to time in my left ear which means I hear my heart beating loudly in it. It would really bother me to hear my heart beating more.

I had pulsitile tinitus literally my entire life (as long as I can remember). It now appears that I was hearing the murmur of my bicuspid valve. It really bothered me as a kid when I had no idea what this noise was. Well, now that my BAV was diagnosed and has been replaced with a mechanical valve, the pulsitile tinitus is gone. Yes, I do hear the valve thumping, especially when it is quiet, but the noise it not an annoying click. It sounds like a normal heartbeat heard through a stethoscope and just doesn't bother me at all. A clicking valve might. The sound was initially a lot more prominent, especially when lying down. It is still more prominent when lying down, but more subtle. I had worried about this prior to surgery as I am on the small, skinny side. Also, I worried that my aortic conduit, that is less expandable than aortic tissue, would amplify the pulse sound and feeling into something that could be very disturbing. It did not prove to be true. It is common that people call the mechancial valve sound a "click", but that is not how I perceive it. Good luck to you. Whatever you do, I hope your result is as good as mine. I had essentially no pain or notable problems with surgery and recovery.

 

[Bill B]

I think I"m just going to have to be more pushy with the cardiologist in asking questions and getting more information from him, as you say, in countries like ours it's difficult to change doctors.

No excess green consumption all at once ? I have to eat tons of greens for the calcium ! But then again, I think I'm more likely to be looking at having the replacement in my 60s so they probably wouldn't think of a mechanical valve - deffo the noise would put me off...been reading other posts on the forum !

You can eat all the greens you want with warfarin. As long as you are consistent, your warfarin dose will take care of that. I eat almost no dark greens, so my warfarin dose is miniscule (1.5mg/day). Yours would probably be much higher, but, regardless, it is is titrated to whatever is needed to produce the desired INR range.

 

[Freddie]

Definitely do not change your diet of greens - I learned the hard way (silly me) listen to what Bill said.

There is another member who is very skinny, not sure if our goat lady can hear her valve hopefully she'll check in and put in her 2 bits worth.

Are you able to hear a Timex watch on someones wrist? In my experience, I only heard the valve while in bed and in time, as the body heals the "tick" became less noticeable.

 

[Ross]

No excess green consumption all at once ? I have to eat tons of greens for the calcium ! But then again, I think I'm more likely to be looking at having the replacement in my 60s so they probably wouldn't think of a mechanical valve - deffo the noise would put me off...been reading other posts on the forum !

With Coumadin, you eat like you always have and the dose is adjusted to the diet. Everything can be adjusted for. I, myself, eat a high amount of Vit k foods. I'm adjusted out for it also.

Every time you go through another surgery, your risking you life. Again, most people can't even hear their valves. Are you going to risk you life over a tiny clicking , if you can hear it at all?