A Question of Timingr

[Guest]

First off, i want to thank all the posters here on this forum. There's tons of very helpful information.

I apologize for the long( and possibly rambling) post.

I'm in kind of an interesting dilemma regarding when should I have my surgery.

A little background: I'm a 55 yr old male and have had a heart murmur from birth. I wasn't diagnosed as a BAV until my late 30's. I also found out I have a prolapsed mitral valve as a bonus. AV Stenosis has been mild/moderate and I haven't had to change my lifestyle. I run, bike, surf, etc. with no apparent symptoms/issues (other than I'm slower than i'd like to be...).

Well, my echo this year has shown my AV Stenosis as severe along with regurgitation. The echo indicated moderate regurgitation on the mitral valve as well (results said suspected moderate to severe). I was referred for an angiogram by my cardiologist. The angiogram confirmed the AV issues and everything else checked out good (atrium & ventrical are good nor any other issues identified). I talked to the doctor that did the angiogram. He agreed, I should get the valve replaced. I also asked him about the mitral valve. He thought it would not be able to be repaired, as one leaflet is very large and the other is small. I was referred to a surgeon for AVR and MV repair/replacement thinking I'm most likely getting a DVR.

Met the surgeon. I asked him about the MV and he said he would not know if he could repair it until he saw it. Since I have no symptoms, he suggested I wait 6 months and get another echo and monitor the progress going forward. He said once I start seeing symptoms, I should give him a call and we'd do the surgery. Until then, he didn't think the surgery was going to make me any better than I am now. He did say if I want to just go ahead and replace them (with mechanicals I'm thinking), he'd go ahead and do it.

So, did you folks have symptoms prior to AVR? What should I be looking for?

Should I just go headband replace the valves? Impacts are I see are surgery risks, recovery, Coumadin (DVR is has a higher INR I understand) and every doctor I've talked to said I have to give up surfing (believe me, I asked all of them).

Thanks for reading this if you read all the way down here.

 

[Fingers]

Sorry for the double post.

 

[JulienDu]

Hello

Don't worry about the big post, at least it does give more information for experience user to understand your situation and possibly help you.

Did you chose a Mech Valve or Tissue Valve for replacement ?

Why did they tell you to give up surfing ? I do not have an opinion, I just want to understand their reasons.

 

[Paleowoman]

Hi - welcome to the forum.

I had absolutley no symptoms prior to surgery, absolutley and really none ! At the point in time when I was refered for surgery I was really surprised as I had never felt better and was really fit. I had been monitored for several years previously, murmur heard in my 20's, valve replaced when I was 60. Post surgery I feel the same. However, if I had not had surgery there was a danger that my heart would have got damaged by the strain it was under. Your heart can be under strain but you not know it as the heart adapts.

Can you get a second opinion from another surgeon ? I personally wouldn't like a doctor who put the ball so much in my court, after all, I'm not a doctor !

 

[Fingers]

Thanks for the reply.

Well, I've been trying to do my research on mechanical versus tissue. At my age, it seems that the information I've been gathering strongly points to mechanical. My cardiologist really tried to talk me out of tissue as well when I mentioned them. Also, if I consider 2 tissue valves at the same time, I would think the risk of a redo trends toward earlier rather than later.

On giving up surfing: Since the doctors are thinking mechanical, they're also thinking ACT. Surfing can be considered a high impact sport. You will fall off the board and it will probably hit you every so often. Not to mention the kooks out there....With that in mind they feel it's too dangerous to surf while on Coumadin. If I really want to continue surfing (Ido...), it seems like I should choose tissue and live with the chance of a redo. If I was only looking at AVR, I would consider it.

Well I actually appreciated that the surgeon showing some flexibility and understanding. It feels like some of the other doctors just look at the numbers and check the box without looking at the bigger picture.

 

[JulienDu]

Thanks for the reply.
Well, I've been trying to do my research on mechanical versus tissue. At my age, it seems that the information I've been gathering strongly points to mechanical. My cardiologist really tried to talk me out of tissue as well when I mentioned them. Also, if I consider 2 tissue valves at the same time, I would think the risk of a redo trends toward earlier rather than later.

Ok. As long as you are aware of the issues that you can have with Coumadin.

Did you ask them why they can not repair your Aortic Valve. Mine was repaired when I was young and the repair was successful. If I did not have an aneurysm 20 years later, they would have not replaced my valve and I would have kept going ( just wanted to avoid as much as possible another Redo). Check this post : http://www.valvereplacement.org/foru...e-and-hospital

Also, you could try to delay the operation a bit because your left ventricule is not dilated and chose tissue valve. There will be a high chance for you to be a candidate for TAVR as they are about to approve it for intermediate risk old patient. At 60 my surgeon told me with the Edwards Tissue, you look at 18 years and possibly more. 75-78 you would very likely be a candidate for TAVRs but check what I am saying with Cardios and Surgeons. You also seems very active so your tissue valve might burn a little bit faster.

 

[Fingers]

JulienDu: Thank you for the reply. I have been studying the Coumadin issues. It seems like many/most folks do not have a problem and for others it's a nightmare. It seems like you won't know until you're there, and then it's too late. I am not looking forward to it, but the valve choice decision seems to me like you have to make a tradeoff no matter what you choose. Tissue valves are also no guarantee that you won't have to take Coumadin either. Wouldn't it be great if they have a long lasting valve that didn't need ACT?

I have been given no option for aortic valve repair. At this stage, I'm sure it's too heavily calcified to be an option.

I think this was where the surgeon was going with his recommendation. The technology is getting better and I have read that there are several trials ongoing for better valves, lower INR mechs, TAVR for low risk patients, etc. The longer that I can postpone, then more options may become available. I'm just not sure how much longer I can stay in the waiting room and what the consequences of waiting are.

 

[JulienDu]

Ok I agree with your thinking. Other experience posters will come and give you other opinions on the matter of "how long you can wait" as I did not have the same history because of my aneurysm.

And by the way, did they get a measurement of your Ascending Aorta ? ( more likely to create an aneurysm at this location when you have a BAV)

 

[pellicle]

Hi

welcome, I assume you're the Guest post?

Well, I've been trying to do my research on mechanical versus tissue. At my age, it seems that the information I've been gathering strongly points to mechanical. My cardiologist really tried to talk me out of tissue as well when I mentioned them. Also, if I consider 2 tissue valves at the same time, I would think the risk of a redo trends toward earlier rather than later.

well first up its a difficult question to answer and there are a variety of issues. To me the most significant issue is age and to me you're close to that borderline where destruction of the valve by your bodys processes would not be a premier reason. If you were 30 I'd say you'd be needing to provide some good other reasons to not have a mechanical valve, but 1 redo operation in your 70's is not as bad as 3 or 4 redos over the course of your life.

On giving up surfing: Since the doctors are thinking mechanical, they're also thinking ACT. Surfing can be considered a high impact sport. You will fall off the board and it will probably hit you every so often. Not to mention the kooks out there....With that in mind they feel it's too dangerous to surf while on Coumadin. If I really want to continue surfing (Ido...), it seems like I should choose tissue and live with the chance of a redo. If I was only looking at AVR, I would consider it.

I'm not sure that its as simple a choice as "if you're on AC therapy that you should give up surfing" ... I don't surf much anymore but I grew up on the east coast of Australia on the Gold Coast and its hard to live 2Km from some of the best surfing beaches on the planet and not have dabbled.

You must keep clearly in mind that doctors are highly conservative and would have you also give up eating bacon or drinking wine too, but few would really follow that advice. Most of my life Doctors tell me I should give up riding motorbikes but support cycling. I've had my worst injuries on cycling. Head on's with cars, car door openings ... so what I'm saying is this:
really its your life, do as you want because while they have fixed stereotypes of danger in mind they don't often do it. My Surgeon plays Polo (yes on a horse) and yet tells me that riding a motorbike is "something I should consider not doing".

As an Australian I normally work from the perspective that after the surgery its all down to me. I'm not so sure that is how it is for Americans who are far more tied into "health schemes" that force them to make choices I don't face. So naturally my perspective alters that.

Myself I manage my own INR and given your age and your cognizant posts I'd say you can do the same yourself. I'm of the view that if you get a mechanical that the chance of reoperation is low, basically down to Aneurysm or installation ******. Those two points can also drive reoperation with a tissue valve : thus they cancel out as factors. That aside tissue will fail and mechanical will not.

Some thoughts on that topic on my blog: http://cjeastwd.blogspot.com/2014/01...r-choices.html

Managing INR isn't difficult, on my blog I've also put together a set of posts on managing your INR, this one is a good start: http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

Lastly I'd say that even with a mitral valve replacement and its higher INR there are indications that the target INR for modern bileaflet mitral valves is likely to be revised down from 3 in the near future. Some points on that here:
http://www.valvereplacement.org/foru...613#post863613

BTW the GELIA study mentioned in that does include Mitral Valves

Patients: Data from 2,735 patients following aortic valve replacement (AVR; n
2,024), mitral valve replacement (MVR; n
553), and combined AVR and MVR (n
158) with the St. Jude Medical (SJM) valve (St. Jude Medical; St. Paul, MN) between July 1993 and May 1999 were analyzed, covering a total follow-up period of 6,801 patient-years. All complications were registered prospectively.

Hope that helps

Don't hesitate to ask more questions as you feel the need

 

[pellicle]

Hi

.... I have been studying the Coumadin issues. It seems like many/most folks do not have a problem and for others it's a nightmare.

my observation is that it goes like this:

if you are otherwise healthy, have no "co-morbidities" (such as obesity, high blood pressure, diverticulitis, eczma .... ) that you'll slip into warfarin as just a pill to take and an INR to consider weekly.

if you are unhealthy, elderly to start with, have a history of bleeds : then you will encounter problems with warfarin.

I'd say that quite a many fit into that first category.

 

[Fingers]

pellicle: Thank you for the detailed response. There's quite a lot of great information that I'll need to take some time to digest.

I do think that mechanical valves would be the best choice for me given the current landscape of choices and my particular situation. I really wasn't probing too hard at the valve selection issue at this point. I'd like to not have to do ACT, but I am guessing I probably like it less to have multiple OHS's in my life. I am in that age window where you could make an argument either way.

I would probably still surf even with the mechanical valves and the ACT. I'd probably end up with some pretty colorful bruises from time to time. As you said, I will continue to live my life how I wish, regardless. I also had a motorcycle up until last year. I do enjoy riding as well. My son recently got one and he has ignited that itch again. I think it would be great to go on rides with him as well.

I don't have too much in the way of co-morbidities other than the high blood pressure you mentioned. It's not too high (150/70 unmedicated) and seems well controlled with my current medication. I'm pretty fit and regularly exercise. I was training for a triathlon (only a sprint) when this started to unfold. The doctors have also told me to stop doing any strenuous exercise for right now, as well. I did back off the training.

I also have a coworker that is on Coumadin for non-valve related reasons. We have talked at length about it and he seems to be doing very well, although he has had to self administer some heparin injections on occasion when things got out of balance. Didn't sound too great there. t talked to him about home monitoring, but his insurance won't cover it. Home monitoring seems to be the big thing for managing it and for quality of life reasons. My coworker agrees (time to go to clinics, seem to do blood draws instead of finger pokes, delays for results, etc.). I even shared some of the information I've found on home monitoring devices of which he was unaware. They seem to discourage home testing around here unless you can't leave your home.

The real question is when to get the surgery. I have known for quite some time that I was going to need my AV replaced at some point. I am now in the window where I can have it done anytime now.

 

[pellicle]

Hi

pellicle: Thank you for the detailed response. There's quite a lot of great information that I'll need to take some time to digest.

you're welcome ... take your time to chew it all properly and digest it properly. Print out what you think is "hey, yeah, that seems right" and then mull over it occasionally.

Expect to go back and forward.

I also have a coworker that is on Coumadin for non-valve related reasons. We have talked at length about it and he seems to be doing very well, although he has had to self administer some heparin injections on occasion when things got out of balance. Didn't sound too great there. t talked to him about home monitoring, but his insurance won't cover it. Home monitoring seems to be the big thing for managing it and for quality of life reasons.

it is ... imagine asking a diabetic to go to a lab twice a week for a vein draw to monitor their blood sugar. Quite a joke! Many EU countries are moving towards self testing for the reasons that:

1. it gives either at least as good and often better paitient outcomes
2. saves $$billions$$ nationally

I find it ironic that in the USA its exactly because of that savings that companies see lost profits.

Myself I travel around between Australia and Finland and do some hiking and camping. If I had to go to some bloody stupid lab for a vein draw at their bec and call it would drive me nuts and make me feel incapacitated. I take my little tester with me on my trips and just do it. The whole thing is more 'mysterious' to those outside of it; so by keeping you out of the loop what the clinic does seems more important than it really is. Thus you'll be a good patient shut up and pay. I think that this is a good "modern cinema" metaphor for the relationship between health care providers and patients in the US system.

When people realise how simple it is and how teaching a few basic points can put you back in the drivers seat they want to leap on it - if they can.

 

[Paleowoman]

The doctors have also told me to stop doing any strenuous exercise for right now…….<snip>….The real question is when to get the surgery.

This is what I meant in my previous reply to your first post above when you asked about when to have surgery and symptoms, when I meant about damage being done to the heart even though you may not be having any symptoms: your doctors wouldn't tell you to stop strenuous exercise if it were not an issue for your heart.

I know I'm a woman and was just a bit older than you when I had surgery, but I do, and did, high intensity weight lifting. To give you an example of the high weights I lift - on referral for surgery I was doing leg press of 150 kilos, that is 330 pounds (I live in the UK where we measure in kilos ), more than three times my body weight.

My blood pressure wasn't high prior to surgery, slightly low actually. What are your other stats: your pressure gradient, your ejection fraction and your aortic valve area size ? I don't know what stats they use for the mitral valve but others here will know. And how have these stats changed over the course of the last few echos ? It was rapid change in pressure gradient that informed my cardiac team of the time for surgery. These stats all come into play when working out the timing.

 

[JulienDu]

The real question is when to get the surgery. I have known for quite some time that I was going to need my AV replaced at some point. I am now in the window where I can have it done anytime now.

The trend in Canada is to operate rather sooner than later. They used to operate patients when symptoms were getting bad but they are now trying to operate when the patients are rather healthy. They have better outcomes at OHS and post OHS. If you are decided to go with a Mechanical and if I were in your position, I would get it over with now. No reason to wait. When they discovered my 4.9cm aneurysm, I could have wait couple years but I told them to butcher me right away.

You are strong, you are healthy and you will give yourself better chance to not die, to recover better and to avoid nasty side effects that an OHS can bring. One example of many is Endocarditis, the older you get ( especially for men) the more chance you have to get it with a damaged BAV or post OHS. And you do not want an emergency OHS with an Endocarditis.

 

[Fingers]

Thank you for the replies.

I think the cardiologist is to recommending surgery even without symptoms due to the severe stenosis and the potential to cause damage/sudden death. I do not necessarily disagree with that assessment and know I need to get this fixed. I talked to a second cardiologist and he gave an assessment similar. He basically said this is not a subjective recommendation, but objective. If the numbers from the tests are in the severe category (like mine), it's time to replace the valve.

Right now, I am free of other damage and symptoms. For how long? Who knows? I will not wait too long.

As for stats, The aortic stenosis/regurgitation is listed as severe 3+ and the report I have shows the gradient across aorta was >4.5 m/sec and LVEF was 65%. So, yeah, not great.

 

[Protimenow]

Although I'm not a doctor, I agree with the 'sooner, rather than later' opinion. When you're strong and healthy, you're a better candidate for the surgery, and likelihood of full recovery from the surgery (and you'll feel a LOT stronger) is better.

As far as INR testing is concerned, I don't think that there is any substitute for self-testing. The U.S. medical establishment, and the anticoagulation clinics controlled by them, are using management algorithms (retesting schedules) that may be arguably either completely ignorant of the facts or marginally criminal. Advising patients to retest in the lab every month, or two months, or even THREE MONTHS ignores the fact that it only takes a week or so for some valves to form a clot and potentially cause a stroke or pulmonary embolism; they ignore the fact that some patients may make changes that they don't realize can change their INR; they ignore the fact that INR is a variable that can change for seemingly no reason. They act as if self-testing and, for many, self-management is unreliable (in my testing, I've had only one truly dangerous meter that I've stopped using), that it's way too difficult for home testers to run an accurate blood test, and that the American population is too damned stupid to tell when their INRs are out of range or to know what minimal changes to make if they are.

Consider having the surgery while you're strong and healthy. It may take a while before your warfarin dosage and INR stabilize. But, do strongly consider getting a meter (my personal choices are 1) Coag-Sense and 2) CoaguChek XS), and test weekly. Keep a log of your dose, date and time of testing, prothrombin time and INR, and any changes that may have had an impact on your INR. (I've been logging mine for more than seven years).