Dave's Heart Valve Journal

Dave Van Buren (DVB)  Hi Deb. That's a great question and probably deserves more thought than just this quick note. But here you go anyway!

In your routine checkups you'll generally ... Read more

Dave Van Buren (DVB)  Hi Deb. That's a great question and probably deserves more thought than just this quick note. But here you go anyway!

In your routine checkups you'll generally get some combination of various exams & tests: stethoscope, EKG, ultrasound, treadmill, blood analysis. So the simplest kinds of questions revolve around the tests and what they are showing. I ask to listen to my heartbeat with the stethoscope and ask "what am I hearing?" When they do the EKG, what am I seeing on the traces? With the echo: show me my annuloplasty ring and the leaflets coming together. Show me the (lack of) backflow when the valve closes. These kinds of questions lead to others and exploring them gives you a good picture of how your heart is working.

Questions about your repair: how is it holding up? Is there anything to be on the watch for? Just in general, how durable are repairs? Most last by the way.

There are questions about good health practices: What can I do to keep my blood pressure low? What can I do to keep my arteries clean? What can I do to reduce my chances of other bad things happening to my heart, for example from diabetes?

If you are on medications you can ask about what they do, how they work, how they interact with other medications. If there are safer or less costly alternatives. Are there other medicines that do the same thing with different/fewer side effects? What are the studies showing their effectiveness and where do you stand with respect to the corresponding study groups. Some drugs require discipline and monitoring so discuss what discipline is needed and how to monitor, especially when away from home base. And what safety nets are appropriate.

Then there are the questions about your potential. How vigorously can I exercise? Is it reasonable for me to do X? Do I have any medical limitations?

Successful mitral valve repairs fully restore patient life spans. Of course the surgery is key, but contributing is that patients learn a lot about heart health and are motivated to apply what they learn. So asking questions during checkups is important.

And congrats to you on your upcoming 2 year anniversary. You seem to have your head fully wrapped around it and are doing a great job helping the "newcomers" in their journeys. Bravo!

-- DVB

Dave Van Buren (DVB)  Hi Deb. Great question. Inspired me to do a full-fledged blog post on the topic so check on my main journal page. I would hope your cardiologist keeps in ... Read more

Dave Van Buren (DVB)  Hi Deb. Great question. Inspired me to do a full-fledged blog post on the topic so check on my main journal page. I would hope your cardiologist keeps in touch with your surgical team regarding your progress. Mine does. But my surgeon doesn't check up on me personally so I send him a short note every six months to a year. Congrats on 17 months, you rock -- DVB

Dave Van Buren (DVB)  Thanks for your kind words. It makes my day to know these blog posts are helpful.

Many people struggle with depression. For some people exercise and other ... Read more

Dave Van Buren (DVB)  Thanks for your kind words. It makes my day to know these blog posts are helpful.

Many people struggle with depression. For some people exercise and other self-help is not enough and it works better if they seek treatment.

I hope your surgery goes well, and your recovery uneventful. Explore ways to reduce risk and improve your already excellent odds.

Safe journey! -- DVB

Dave Van Buren (DVB)  Half marathons! Dude, you are busy proving it just gets better and better after getting wonky valves fixed.

I'm doing pretty good. Finished teaching an evening ... Read more

Dave Van Buren (DVB)  Half marathons! Dude, you are busy proving it just gets better and better after getting wonky valves fixed.

I'm doing pretty good. Finished teaching an evening class last quarter (do it every few years) so back to playing lots of ultimate frisbee. League started last week and its looking like a good season.

Great to hear from you, be monstrous in 2013! -- DVB

Dave Van Buren (DVB)  Thanks Nancy. Yeah, things only happen to other people. Ain't that the truth. Until it happens to you. The thing is there's lots of stuff that happens to ... Read more

Dave Van Buren (DVB)  Thanks Nancy. Yeah, things only happen to other people. Ain't that the truth. Until it happens to you. The thing is there's lots of stuff that happens to other people because there are so many of them. But remember too that we are the other people's other people! Happy New Year to you and may your beat be strong! -- DVB

Dave Van Buren (DVB)  Thanks Lee. Your info about diabetes and the heart is key. They already tinkered around in my heart once and I'm not so keen on it happening again! Good ... Read more

Dave Van Buren (DVB)  Thanks Lee. Your info about diabetes and the heart is key. They already tinkered around in my heart once and I'm not so keen on it happening again! Good luck with your plan. Happily there are still lots of yummy things to eat. -- DVB

Dave Van Buren (DVB)  Hi Deb. Yeah, it takes thought more than anything else. And a decision each time faced with something sweet. Cutting out all sugar sounds hard - I just cut ... Read more

Dave Van Buren (DVB)  Hi Deb. Yeah, it takes thought more than anything else. And a decision each time faced with something sweet. Cutting out all sugar sounds hard - I just cut out the "added sugar". And now I relaxed that some, maybe by a third back to my prior levels since it had such an effect. No need for torture! -- DVB

Dave Van Buren (DVB)  Hi Connie. Hope all goes well with your honey. What we eat is as much a habit as anything else. Hard to change... until it's a new habit. A lot of what ... Read more

Dave Van Buren (DVB)  Hi Connie. Hope all goes well with your honey. What we eat is as much a habit as anything else. Hard to change... until it's a new habit. A lot of what we eat is social, so I'm sure you will be a huge help to him if he wants to give it a go. All the best to you guys -- DVB

Dave Van Buren (DVB)  HI Deb.

Beta blockers also are used to reduce hypertension aka high blood pressure. They weren't part of the report, but it's a plausible thought that they ... Read more

Dave Van Buren (DVB)  HI Deb.

Beta blockers also are used to reduce hypertension aka high blood pressure. They weren't part of the report, but it's a plausible thought that they would have similar effect because they reduce the work load on the heart. Beta blockers are also used by millions, so their side effects and risks are relatively well known.

By the way, heavy lifting raises your blood pressure significantly and puts a higher load on your heart. It's kind of like an anti-drug because you really want to lower the load.

These drugs all operate on different parts of the blood pressure regulatory system. Beta-blockers bind to receptors in the cell membranes of your arteries and smooth muscle, preventing the entry of adrenaline.
If adrenaline were to enter those cells it would cause them to contract, which in turn would increase blood pressure.

Beta blockers are also used post heart surgery to limit heart rate and blood pressure, and I guess from your note, palpitations too. I had a six week prescription of metropolol (which targets cardiac muscle beta receptors) after my surgery. In other settings beta blockers are used to reduce anxiety, and to lessen the severity and frequency of chronic headaches among other things.

And thanks Deb for the encouragement. I can't articulate well enough what it means to me when I hear that my posts have been useful. And I have to give thanks to everyone who posts here, giving information, spreading encouragement, being examples to the rest of us and even asking for help. This is a magical place and thank you for being a part of it.

Take care -- DVB

Dave Van Buren (DVB)  Hi Wes!

Thanks for the kind words. They picked me up on a blah day.

I'm a big believer in rehab. It gives structure and discipline to the post-surgery physical ... Read more

Dave Van Buren (DVB)  Hi Wes!

Thanks for the kind words. They picked me up on a blah day.

I'm a big believer in rehab. It gives structure and discipline to the post-surgery physical conditioning necessary for rapid recovery. Also gives confidence to push your body some that most folks wouldn't have without the monitoring.

5K trail run? Monstrous! I love trail running. I'm not so big on races but I do one at work each year because it is on a trail. Trail running though... It's such a free feeling running through the wild with nothing but your shirt, shorts, and shoes. Kinda primal. Keep it up my man.

-- DVB

Dave Van Buren (DVB)  Thanks Lee.

I think you hit the nail on the head with "the sheer satisfaction of taking control". Taking control directly confronts the negative feelings ... Read more

Dave Van Buren (DVB)  Thanks Lee.

I think you hit the nail on the head with "the sheer satisfaction of taking control". Taking control directly confronts the negative feelings we can have. Then we are doing things instead of things are being done to us. Much better for our heads.

Your rehab routine is an inspiration. Monstrous! -- DVB

Dave Van Buren (DVB)  So here's how I read the chart in my case. I was diagnosed with severe mitral regurgitation following a bad heart murmur and an echocardiogram, so I entered ... Read more

Dave Van Buren (DVB)  So here's how I read the chart in my case. I was diagnosed with severe mitral regurgitation following a bad heart murmur and an echocardiogram, so I entered the chart at the top. Since I did not have any symptoms, I went to the left, where it says "No" and dropped down to the circle "LV Function". That's left ventrical function. My "EF" (Ejection Fraction) was 0.6 (60%, normal) and my "ESD" (End Diastolic Dimension) was less than 40 mm (heart not significantly enlarged), so I dropped down again to the left. Then, since I did not have atrial fibrillation or pulmunory hypertension I continued to drop down to the "mitral valve repair likely" circle. The answer was yes (90% or better of the time it is repairable for non-rheumatic valve disease). That resulted in a recommendation to undergo surgery for repair. So I scheduled it at the earliest time possible to avoid further deterioration of my heart.

If the chart is obscured by stuff from the web site, you can click on it and drag it to your desktop where it will just be an image file on your computer.

-- DVB

Dave Van Buren (DVB)  Hi Lavrina.

Bum luck to be in this spot, it's a real head-bender. A real surprise to me too, when it happened. But the good news is that successful repair ... Read more

Dave Van Buren (DVB)  Hi Lavrina.

Bum luck to be in this spot, it's a real head-bender. A real surprise to me too, when it happened. But the good news is that successful repair rates are very high. To be sure though, it is no fun. Some things to keep foremost in mind. First off, I'm not a medical doctor, so use all this to kick start your conversations with your own doctors. Take a copy of the guidelines and go over that "flow chart" that describes who needs mitral valve surgery. Start at the top and discuss each of the steps/choices in your case. Those guidelines are the result of hundreds of thousands of cases - you absolutely need to take best advantage of what has been learned (and at such cost).

Mitral valve repairs are best done at centers of excellence where they do large numbers of them and are very experienced. Especially if your situation is a bit out of the usual, which its sounds like it may be. But even if not, you odds are just better there. Your cardiologist can refer you to one, or you can self-refer after doing some research. US News and World report lists best heart hospitals on their web site - ask your insurance carrier which ones you can use:

US News Best Heart Hospitals

Depending on what ails your heart it could be that the severe mitral leakage is primary, and that a repair will allow your heart to tighten up so the other valves leak less. This can happen if your heart has enlarged in response to the mitral valve problem. So you may or may not be looking at fixing multiple valves. Also be aware that some leakage is normal for all valves - the ultrasounds are so good that they can almost always find something.

Insist that the ultrasound/echo results be presented quantitatively so that the various doctors you'll be talking to have a good basis for understanding your condition. They should at least give you the various numbers used in that "Guidelines" chart and maybe a few more like "ERO - effective regurgitant orifice" area. All these numbers are used to decide on treatments and understand risks.

Get a copy of your echo's, any x-rays, labs on a CD an take it with you when you have consults.

On Monday, ask the question, "What can we do now, between now and surgery, to lower my risk?" There could be a number of things you can do from medical therapy to reduce the load on your heart to diet and exercise (either more or less) depending on your diagnosis.

You want to get a second opinion pretty much no matter what. If two doctors agree, you know what you are facing. If they don't then you know you need to get to the bottom of it.

In the end, you need to be your own best advocate - be assertive. But also it can help to have someone go with you to keep conversations with doctors on track.

I know its a lot to take in, and in a short time. But it is smart to move fast once you know you need surgery. If you can adopt a curious, hopeful, and eventually even excited (because its gonna save your life) attitude, that will help. In the meantime why don't you start your own journal here to get support from folks going through the same thing?

Let us know how it turns out Monday -- DVB

Dave Van Buren (DVB)  Hi Joe. Yeah, you did good. I think the issue of minimally invasive vs OHS would be tilted less in favor of OHS for me in the case of aortic valve surgery. ... Read more

Dave Van Buren (DVB)  Hi Joe. Yeah, you did good. I think the issue of minimally invasive vs OHS would be tilted less in favor of OHS for me in the case of aortic valve surgery. The mitral valve, being deep inside the heart and near the major cardiac arteries is in a much trickier place where it can make a lot of difference having more workspace and better viewing. I'm with you on thinking better valve replacement techniques will make it a lot easier should you need a new tissue valve. Best to you, my man -- DVB

Dave Van Buren (DVB)  Hi Lee. Thanks for your kind words, they mean a lot to me. I know it seems crazy from the outside to opt for the full OHS, but when I looked in to it, I was ... Read more

Dave Van Buren (DVB)  Hi Lee. Thanks for your kind words, they mean a lot to me. I know it seems crazy from the outside to opt for the full OHS, but when I looked in to it, I was convinced that its safety outweighed the larger wound. Having some exercise going will offset some of the larger wound aspect. Maybe I'll do a post someday on the statistics of OHS vs minimally invasive vs robotic.

I'm so glad you are doing well and planning on getting back into running soon. The way I started back running was one day I was on my third or fourth walk around the block and just started shuffling a little faster. Surprised it felt good and then I knew I could slowly ramp back up. All will go well as long as you increase in small increments. That way your body will only give you small complaints for feedback. That's the way to play it safe. That and letting your doctor know your plan.

Run for your life! -- DVB

Dave Van Buren (DVB)  Thanks Connie. Hope you're doing well since your last update. And good for you holding Linda H's hand leading up to her surgery tomorrow. That kind of friendship ... Read more

Dave Van Buren (DVB)  Thanks Connie. Hope you're doing well since your last update. And good for you holding Linda H's hand leading up to her surgery tomorrow. That kind of friendship & love is what it's all about.

U iz cool. -- DVB

Dave Van Buren (DVB)  When you do your consult, you may want to take along a copy of the "Guidelines" (see my June 30 post) and use them as a conversation prop. From the context, ... Read more

Dave Van Buren (DVB)  When you do your consult, you may want to take along a copy of the "Guidelines" (see my June 30 post) and use them as a conversation prop. From the context, I am assuming you are looking at a mitral valve repair. Once repair surgery is indicated, guidelines are for asymptomatic patients generally to schedule it soonest at a center of excellence that does many, many repairs. Thanks for the kind words. Stay strong, my man -- DVB

Dave Van Buren (DVB)  Here is the relevant decision tree from "The Guidelines" (see my June 30, 2012 post):

Once AS is graded as severe, ... Read more

Dave Van Buren (DVB)  Here is the relevant decision tree from "The Guidelines" (see my June 30, 2012 post):

Once AS is graded as severe, you enter this decision tree at the top. Since you are down from 1.0 cm you go down from the top box. Then if you are having symptoms, you drop down through a 'class I' indication for surgery. That means it is rigorously backed up by studies. If you are not having symptoms, but your ejection fraction is less than 0.5, then that's a 'class I' indication for surgery, meaning that surgery is medically advised. Other circumstances are other paths. Formally class I is "should be performed" while class IIB is "may be considered" (and has benefit greater than the risk).

You could take this chart, or a printout of the Guidelines along for a chat with your doctor. Also, maybe a copy of the AS survival curves.

Best to you -- DVB

Dave Van Buren (DVB)  Hi Tom.

To be sure, look ahead and optimize your taxes. The world will be better for you if you do. You should consider the deduction a discount on your ... Read more

Dave Van Buren (DVB)  Hi Tom.

To be sure, look ahead and optimize your taxes. The world will be better for you if you do. You should consider the deduction a discount on your health care expenses. The discount, of course, comes from somebody else's taxes, ie it is "free" to you. In some calculation done prior to casting a vote it was considered beneficial to give you this free stuff, by all means take advantage, you are supposed to.

As our society has become more wealthy and medical science has advanced, the "standard of care" for various diseases has become higher. And in many cases more expensive (not in all, however). Severe heart valve problems 50 years ago were likely terminal once symptoms set in and the associated health care costs were minimal. Now the standard of care is a curative $150K+ish surgery.

All aspects of health care now account for 15-20% of the economy. The question of how to pay for it is highly political, yet we all want this level of care, if not better.

Ultimately, of course, it is paid for by the wealth created by the rest of the economy, moved somehow over into the healthcare sector. On average, we consume what we pay for individually, but that's just on average. Some folks consume more than they pay for, and some less. That's why some of it is called "free" healthcare - there are a lot of folks who get more out than they put in. And then there are the folks who put more in than they get out. This is the wealth redistribution aspect of healtchcare economics and why the insurance model is so common.

We all value our own health, and to variable extent the health of others. There are strong arguments in favor of a healthy citizenry, just like there are in favor of a citizenry not oppressed by a foreign power, which is why we have a strong national defense. And we live in a compassionate equal-opportunity oriented society where high quality healthcare facilitates those goals. Most of us can agree on these things, I'd think.

But the details of who pays how much are the subject of great debate and are resolved by the political system and the market economy. It is the way it is because of the views that prevailed in those arenas.

Our democracy works when we have open debates and play our roles in shaping how things are done. The quality of the results are directly related to the quality of the debate, the factual foundation of those debates, and the strength of our actions.

Thanks for your thought-provoking comment Tom -- DVB

Dave Van Buren (DVB)  Hi Debbie, Yes, a similar post on aortic valve regurgitation and stenosis would be good as this is the next-largest group of valve disease. I did do a little ... Read more

Dave Van Buren (DVB)  Hi Debbie, Yes, a similar post on aortic valve regurgitation and stenosis would be good as this is the next-largest group of valve disease. I did do a little research for a neighbor who has AS. The upshot there is that delaying surgery beyond the onset of symptoms adds significant risk. The unifying feature is that symptoms develop after the heart has used up its "elastic" adaptability to compensate for the valve's bad behavior. Further changes are at least partially irreversible and lead to decreased long term survival odds.

Dave Van Buren (DVB)  Hi Jim. OK, I am not a doctor, so my thoughts are purely for entertainment value. "The Guidelines" (see my June 30, 2012 post), which describe the current ... Read more

Dave Van Buren (DVB)  Hi Jim. OK, I am not a doctor, so my thoughts are purely for entertainment value. "The Guidelines" (see my June 30, 2012 post), which describe the current standard of care for MV regurgitation only state that post surgery assessment of the effectiveness of the repair should be done. In practice, different doctors will have different follow-up practices. Often a post-surgery echo is done. This directly images the blood flow through the repaired valve.

From the perspective of physiological heart function, I would think that a before/after set of maximal stress treadmill tests would relate directly to surgery's impact on quality of life. So useful in that regard.

If you are interested in keeping track of your performance it may also work to use a sports medicine center. The combination cardiologist/sports medicine ought be powerful for athletic valvers. Hmmm… maybe I should make an appointment myself.

Dave Van Buren (DVB)  Hi Linda. Sounds like a real adventure. When you are maxed out on exertion it really does feel that same way. You just want it to stop, in fact at some point ... Read more

Dave Van Buren (DVB)  Hi Linda. Sounds like a real adventure. When you are maxed out on exertion it really does feel that same way. You just want it to stop, in fact at some point you just can't go any more no matter how much you try.

Hope all goes well on the 16th.

Dave Van Buren (DVB)  Thanks Chuck. I don't know how long I'll last. I have a list of about 2 dozen topics to write about. The list is growing faster than I can knock them off. ... Read more

Dave Van Buren (DVB)  Thanks Chuck. I don't know how long I'll last. I have a list of about 2 dozen topics to write about. The list is growing faster than I can knock them off.

NJF (!) says you get your life back and don't need the journal as much anymore after a while. I hope its like that for everyone. Part of what getting fixed means.

you've got rhythm!
we've got the beat!

-- DVB

Dave Van Buren (DVB)  Thanks Connie. I've got 3 in the works and maybe I'll post one before upcoming vacation. One is on the benefit of early exercise and rehab, one is on how ... Read more

Dave Van Buren (DVB)  Thanks Connie. I've got 3 in the works and maybe I'll post one before upcoming vacation. One is on the benefit of early exercise and rehab, one is on how we got our healing ability, and one is on why some of us can be asymptomatic and still have severe valve problems. Eenie, meenie, minie, moe...

Dave Van Buren (DVB)  Yeah, some of us should have had our own stethoscope taped to the right spot to speed the line of interns along!

Nice now to be 'boring' in the old heart sounds ... Read more

Dave Van Buren (DVB)  Yeah, some of us should have had our own stethoscope taped to the right spot to speed the line of interns along!

Nice now to be 'boring' in the old heart sounds department, eh?

Thanks for the kind words.

Dave Van Buren (DVB)  I think we learn so much from this, and then apply it going forward in all sorts of situations: family, work, yeah health. More than our hearts get changed, ... Read more

Dave Van Buren (DVB)  I think we learn so much from this, and then apply it going forward in all sorts of situations: family, work, yeah health. More than our hearts get changed, we learn some pretty advanced 'life lessons' too, and those make life better for us and those around us.