Poison ivy -> BAV

[Guest]

They say that people with BAV are often diagnosed inadvertently; that was certainly the case for me. Got a bad case of poison ivy on my face while hiking, went to the clinic for it but the LPN sent me to the hospital after detecting a significant heart murmur. ER doc did an EKG, then later a heart ultrasound after consulting with a cardiologist. Found out I have Wolff Parkinson White syndrome plus a bicuspid aortic valve. It took me quite by surprise as my symptoms are not severe and there's absolutely no history of heart problems in my family.

I think the symptoms have crept up so slowly on me that I didn't take notice. I don't have any problem with most day-to-day activities (yet), but virtually any exercise wears me out immediately. I had chocked this up to being out of shape, getting old, stress, whatever. I'm actually kind of relieved to find out that there's another cause, since it was starting to prevent me from doing things I enjoy like riding bikes with the family, taking care of the yard, pretty much anything active. There were a few instances in the past year where I almost passed out after overexerting myself--I can't believe I didn't see this as a sign.

Anyway, I met with the cardiologist and he told me that based on the first ultrasound, my aortic stenosis is in the "severe" catagory (0.9 cm2) and I will most certainly require a valve replacement. OK, I had read just about everything there was to read on it (including this site--what a great resource) so I was prepared for that. What surprised me though is that I'm 39 and he recommended a tissue valve for me. His opinion was that although the tissue valve may only last 10-15 years, by that time the TAVR procedure will be sufficiently advanced that they will probably be able to replace it without OHS. I asked him about mechanical valves and he agreed that it's a good option but he was quite negative about the Coumadin regimen. He said it's very inconvenient (for some) and presents some dangers. That seems to conflict with what I've read here and elsewhere. To be fair, he was clear that this should be a discussion between me and my surgeon.

So, I have a TEE and heart cath scheduled for tomorrow. After that he's going to refer me to a surgeon. I have to admit that I'm a little nervous about the selection of a surgeon, and that's the main purpose for my post here. I assume it's normal to get a second opinion on something this major? With many things in life, like a new car or roof, we get "second opinions" on the basis of price. I have good insurance so that's not the issue here. I also can't really compare the expertise of the surgeons since I'm not a doctor. So it seems like you're basically shopping around for the guy that you feel the most comfortable with--some combination of reputation, experience, personality, availability, and probably a half dozen other words. I'm curious how others here have made this choice.

My cardiologist has mentioned that he is going to refer me to someone at Aultman (Canton) although he hasn't given me a name yet. I have a source at Aultman who has told me that if you can't get Novoa, go elsewhere. It's really hard to know how seriously to take these kinds of statements! Cleveland Clinic is also close to me so a second opinion there is certainly an option.

Thanks to everyone here. Reading the posts on this site has gone a long way toward making me feel more comfortable about this whole thing.

 

[epstns]

Hello, new Guest! Get yourself a user ID and hang around a while. . .

You've had the same sort of experience many of us had -- that of the "surprise" diagnosis. Mine came at age 51, when in the midst of an initial evaluation exam an endocrinologist asked me "How long have you had that heart murmur?" I didn't know I had one, and had just received a "clean" bill of health from my internist 2 weeks before. Thankfully, the Endo convinced me to have the murmur evaluated, and about 10 years later I had the valve replaced. In early middle-age, one should not be short of breath or unable to do the things we are used to. Getting old does not happen that soon or that quickly.

From your brief statement of your stats, it does sound like valve replacement is in your nearest future. I take issue, however, with your cardio's assertion that in 10 or 15 years TAVI will be the standard. We just don't know, and there is nothing yet that I've read in the literature that would tell me with any confidence that it is going that way soon. I would most certainly get another opinion - from a surgeon who does lots of aortic valve replacements. These surgeons are more tuned into the current research and progress to date.

That said, although I have a tissue valve, I would be surprised if a surgeon recommends a tissue valve for you. You are young, and in the younger patients, tissue valves do not last as long as they do in us older folks. That alone would bring me think a mechanical valve to be more appropriate at your age, unless you just want to do this surgery over again in the future. I was 63 when I had my valve replaced, and felt pretty good about choosing tissue. At 39, I would have gone mechanical.

I have only limited experience with warfarin/Coumadin, as I only took it for 3 months immediately post-op. I'm sure others will come along here to help you understand the real situation of living with anticoagulation therapy. From what their experiences tell us, I would not fear it like your cardio does. He is probably parroting back to you the traditional wisdom of 10-15 years ago, before home testing of INR became mainstream.

Look for posts by pellicle and Dick0236. I'm sure there are others as well, but these two are currently active and are long-term anticoagulation patients, and they tell it like it is. **** is one of the patients having a mechanical valve for the longest time span, and he "has done it all" over the years.

Above all, welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. Visit often and ask all the questions you can think of. The folks here are very caring and open to sharing their personal experiences, and between them all they have probably seen/experienced almost everything there is about valve surgery.

 

[honeybunny]

Sorry you have to be here but welcome!

I agree with everything Steve said (saves me from typing). I also have a tissue valve, "installed" just after my 61st birthday. My choice was based in part on warfarin therapy and the ticking of a mechanical, especially the latter. I am NOT banking on TAVR being the procedure of choice when the time comes for a re-do. Another thing to keep in mind is that having a tissue valve doesn't not completely rule out warafin. I've read about some tissue valve recipients who end up with warafin anyway.

I'm glad you were diagnosed in time. Like you, I had some issues (shortness of breath mostly) but atributed them to my age, weight, and 44-year smoking history, and had no history of heart problems in my family. I was stunned when I received my diagnosis of severe stenosis but glad it happened before I dropped dead.

You are right....this is a great resource. Glad you found it.

Michele

 

[kolyur]

Hello all, I started this thread--for some reason my post showed up as Guest. Thanks for the replies so far, it's reassuring.

 

[dornole]

Conventional wisdom would be mechanical for somebody your age, to avoid not just one but multiple re-ops every 7-20 years or so (more likely the lower end for a young person like you who will degenerate the valve faster) with each repeat surgery carrying more risk. To me whether they're done by OHS or TAVR is not a crucial factor. The reason TAVR is not the standard of care NOW is because it is currently MORE RISKY than OHS. It will never be a no-risk procedure, and valve-in-valve procedures repeating it more than once are going to be more risky still.

I'm 48 and on year 14 of a repair that was estimated to last 10-15 years, so unless I somehow continue to dodge the bullet for a couple more decades, or find a surgeon who can durably repair my valve (seems unlikely), I'll be getting a mechanical. In my case, being female and having rheumatic heart disease are 2 factors that in addition to being young put me at high risk for rapid re-ops if I chose tissue. I'll have to have some kind of flashing sign or cattle prod to make sure I take my warfarin though as I am pretty ditzy.

Heck ya get an opinion from Cleveland Clinic if they are close to you, they are one of the top shops in the country. When it's my turn to choose a surgeon I plan to look at whichever local one my cardiologist recommends & Mayo Clinic that's an hour from home. I will focus on experience with my specific kind of replacement which is for rheumatic mitral valves and not the most common situation, at least in the US.

Sorry you had this surprise when you just thought you had poison ivy! But glad you are getting care and found the site, it is such a great resource.

 

[dick0236]

......... He said it's very inconvenient (for some) and presents some dangers. That seems to conflict with what I've read here and elsewhere. To be fair, he was clear that this should be a discussion between me and my surgeon.
.

Coumadin(warfarin) is necessary if you want to live successfully with a mechanical valve.....but it is not "inconvenient".......unless you can't tie your own shoes AND anytime you enter a hospital for any kind of procedure you will be presented with "some dangers".

Probably 90+% of a cardios patient list is made up of people without valve problems.....and many are predominately seniors with afib problems or other cardiac problems requiring an anti-coagulant. I have talked with many docs over the years and they all agree that the biggest problems with warfarin is non-compliance......and that is something that you can't do with warfarin. BTW, they are having the same non-compliance trouble with the newer ACT drugs......check out all the class action lawsuits ads on cable TV. Any treatment plan is doomed to fail if you don't follow some simple rules.

 

[FredW]

Kolyur, I would suggest you look at Cleveland Clinic and maybe get a second opinion. The valve area of .9 is one of many criteria that they use in the US to justify that surgery is time. The TEE and cath tests will give you more information which is good. Your description of getting tried and being out of shape are classic for stenosis. The do creep up slowly for many. Best of luck to you and welcome to the waiting room. Be prepared to get frustrated while you gather information and do your research.

I can't wait until our friend here, Pelicle, reads and comments on what our cardiologist said: "...but he was quite negative about the Coumadin regimen. " Frankly, if a cardiologist told me and I was your age, I would seek a different cardiologist.

Best of luck to you and welcome to the 'waiting room'

Fred

 

[pellicle]

Hi kolyur

and welcome to the waiting room ... I guess your biggest task is to remain calm and slowly churn through the data.

hmmm ... reading the above responces I seem to have a "reputation" ... well I guess I've been a "regular" here for 4 years now, so it shouldn't surprise me.

There is lots of information in your post but if you don't mind (as some is outside my domain of experience) I'll focus on the one point. Valve selection.

So upfront I am in no way "invested" in any choice you make, so please do not consider what I write to be in any way telling you what to do. If it seems like what I say is QED, well thats's probably because it is. As always I encourage everyone to challenge (even in their own mind) the authenticity of what I write and look it up. Look it up in good and sound resources not the internet equivalent of supermarket stand rubbish web sites festered with ads telling you how to get great Abs or a great looking arse...

Do you know the word veracity?

So journals are your most attractive source, at the very least what they write is verifiable.

... There were a few instances in the past year where I almost passed out after overexerting myself--I can't believe I didn't see this as a sign.

my lovely wife died of a brain tumor the size of a squash ball ... in hindsight some of the symptoms were obvious and I most certainly kicked myself for "not seeing the signs". I only have the words of the brain surgeon who did the operation to relieve the pressure due to swelling. "With this cancer even if you'd found it 3 months ago, all that would be different is we'd be having this conversation 3 months later than now". So its easy to miss the 'obvious' when you know what you are looking at.

You in contrast are in luck ... aortic valve replacement is one of the most successful surgical interventions in current medical practice. You (like all of us here) are extremely likely to have a good outcome and be stuck on this planet with our wretched Politicians and other vile creatures.

...OK, I had read just about everything there was to read on it (including this site--what a great resource) so I was prepared for that. What surprised me though is that I'm 39 and he recommended a tissue valve for me. His opinion was that although the tissue valve may only last 10-15 years, by that time the TAVR procedure will be sufficiently advanced that they will probably be able to replace it without OHS. I asked him about mechanical valves and he agreed that it's a good option but he was quite negative about the Coumadin regimen. He said it's very inconvenient (for some) and presents some dangers. That seems to conflict with what I've read here and elsewhere. To be fair, he was clear that this should be a discussion between me and my surgeon.

Hmmm ... well I guess it is "inconvenient" ... however if its going to be very inconvenient then on that scale how would you rate a second sugery, with all of its issues? Issues like not just death, not just maybe landing a pacemaker (sorry Steve) but getting an infection that requires perhaps a year, perhaps the rest of your life to clear?

I'd call that unmitigated disaster level of inconvenient if taking a pill every day is "very inconvenient".

I suppose you've found it already, but on my blog I have a number of posts about my "heart valve replacement" journey. At the present the top post is one I would suggest you read with the first order of priority (the others just more or less document my story of struggle with an infection ... and not even a serious one at that!).

http://cjeastwd.blogspot.com/search/...Replacement%22

Now there are a number of reasons why Warfarin could be an inconvenience but I didn't see any of them likely in your post but you may have kept them private. So the biggest issues with warfarin are if you are an ill person who is frail and already on a number of medications. That's a problem for management of warfarin (but not really very difficult) as different drugs can and do interact with what warfarin is administered to do => which is elevate your INR slightly.

Having said that if you monitor weekly (something that every part of the community except cardios seem to think is a good thing) then that management issue can be managed.

Next one is if you're way too mentally incompetent / frail to reliably take your medicine or reliably measure your INR then perhaps that will be an obstacle to warfarin therapy. However you've done a god job of typing in your issues, so I'm willing to discount you being a mentally feeble person in care.

Next is if you're drastically effected by maladies such as ulcerative colitis or ulcers, or other bowel disorders. This will mean that when you have all those small bowel bleeds that warfarin will make them worse.

Next (and least likely) is that you have some sort of issue with warfarin. I've only read of one documented case and that turned out to be an allergic reaction the dye in the brand of warfarin chosen and was fixed by changing brand.

So if you've not ticked any of those and can answer YES to : are generally healthy and active. Then I'd say you're good to go with warfarin and self management.

Your next major impediment comes from the fact that you live in the USA where medicine is a money spinner and "big business" more focused on profit than on good community outcomes. This creates a pressure to move you away from sound management of your valve and encourage you down paths where much more revenue will be generated. Mechanical valves seldom need reopoeration (unlike all other choices which require it) and warfarin is so cheap that noone makes money out of it. I pay about $6 a month for my warfarin, when I'm in Europe its about half that.

Take your time and churn through that data carefully. There is a talk from a sugeon from the Mayo on my blog, which the Mayo seem to have dropped. He made a lot of sense and I fully recommend listening to it. I've made a backup of it here, on my dropbox. I also discuss that in my blog post.

Keep in mind this point: we are never cured of valvular disease, we exchange valvular disease for "prosthetic valvular disease" ... nothing more , nothing less. Valvular disease is a path to death. Management is done by surgery and thus the exchange of one disease which can not be managed for one that can.

Your choices is about management. Do you want multiple reoperations or do you want to just take a pill and be responsible for your INR?

If you were over 60 I'd say that you could flip a coin because you're likely to only need one reoperation ... but at 40 you'll need a few. 15 years is the best you can hope for with a tissue prosthetic valve .. so at best it'll be
operation now
operation @ 55
operation @ 70
no sane person signs up to that without great reasons, and each operation comes with significant increases of bad outcomes ... some of the bad outcomes may make you think "if you're lucky death".

I would reiterate Dornoles point about younger age being tightly correlated to rapid degeneration of tissue valves, there are quite a few stories here of getting far less time on a tissue prosthetic, 9 years, 5 years ... some even 1 year. Run those numbers and see the reoperations.

TAVI is a possibility, but as far as I know you can get a TAVI once, then one valve in valve (reducing your valve diameter, which is not a good thing) and then you need OHS to reboot that process. TAVI valves don't last as long ... so maybe 7 years then 5 years (if you believe the sales pitch). To me TAVI is designed for the weak who will not survive surgery and the professional can kickers ...

So my view is that if it was me (and it has been) then I'd take the mechanical (which I did) and take responsibility for management of my warfarin and get back to just living my life with the quite minor inconvenience of having to weekly measure my INR, dish out my pills (and I can sure help you with that if you like) and then go do what I want. You may like to read my post (here) on INR managment to examine all the ******** that you will hear about warfarin management.

Impacts on my life? Well I go XC Skiing in the winter, I'm about to refurb my kitchen (lots of sharp power tools there) soon I'm about to pack up and head off to Finland (I'm in Australia right now) and probably do some travelling. Oh ... and I'm 52


Hope that helps

 

[kolyur]

Sitting in a hospital bed right now with a sandbag on my crotch, recovering from TEE and heart cath which fortunately went very well. Bad news of course is that it confirmed presence of BAV, severe stenosis and aortic regurgitation. Good news is that my heart is otherwise perfectly healthy. Cardio is going to refer me to Novoa at Aultman which I was happy to hear.

Thanks to all for your comments so far.

 

[MrsBray]

I went 10 years from diagnosis to surgery. My cardiologist (age 40ish) and my surgeon (age 40ish) are on the same valve replacement team at the hospital. I was also 40ish at the time of surgery. Cardio strongly suggested tissue valve so I "wouldn't have to be on coumidin the rest of your life." Surgeon strongly suggested mechanical because, "Even though I make my money from operating on people, I don't want to see you in here in 5-7 years." We did talk about TAVR, because that is a special interest of my surgeon - he does them. He said I'm not old enough or sick enough to warrant TAVR, and the goal is to keep me that way. Surgeon suggested it might be a while before the technology is available for younger/healthier patients, or it might be available sooner. Ultimately, he left it up to me.

I have a lovely On-X valve that hopefully I will take to teh grave with me in many many more years.