Second AVR Concerns and Questions

[Cathy]

I am a returning member of this group. I was a member 12 years ago before I had my first OHS for a AVR. I was 44 and chose a tissue valve. I have had no problems whatsoever until now. I am now getting ready to turn 56 and am looking at a second AVR. I am having a difficult time deciding between another tissue valve or going mechanical. I am not a fan of warfarin and it worries me to be on this drug. I am a very active young 56 year old and don’t want my lifestyle to change. I am in perfect health other than the valve. I am afraid the warfarin will cause me to have other health problems. My questions to you all is this: 1. Who has had a second AVR and what type of valve did you choose? 2. Has anyone had the procedure where they go up through the groin area instead of opening you up?

I relied on this website the first go round and it really eased my worries so I am going to ask you all for help again. Thank you so much for making this easier.

 

[pellicle]

Hi Cathy

do you have any reasons that warfarin will cause you any difficulties (I mean apart from general fears)?

I am actually a convert to seeing that warfarin is actually a very well understood drug and is very easily controlled. I recommend you read my blog posts on that and also this post on making decisions.

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

on managing my INR
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

and everything on my blog on managing INR (even around subsequent small surgeries)

http://cjeastwd.blogspot.com/search/label/INR

I've had 3 OHS, and on my third at 48 I chose mechanical.

The procedure to go through the groin is a TAV and to be honest is a temporary fix which will not last as long as you've already had from your tissue valve.

My view is that unless you have significant co-morbidities that weigh against warfarin that you should consider that you've kickked the can down the road, seen for yourself what happens with that and consider seriously a mechanical valve.

do you have any sign of aneurysm? (that's actually an IMPORTANT question.

Best Wishes

 

[pellicle]

also, (while its on my blog you may miss it) I strongly recommend you take a cup of coffee (or tea), a notepad and pencil / pen and go through this presentation (pausing to take notes)

 

[Cathy]

Thank you so much pellicle. I will check out the information. I have not been told I have an aneurysm. My valve has hardened and is elongated. Just general fears of taking warfarin and some of the risks that it has.

 

[DDT77]

I had ross procedure at 20, and mechanical AVR about 20 years after that (ON-X). Been on warfarin >7 months post mechanical AVR. Took over management of INR (warfarin dosaging) from cardiologist about three months ago. Prior to three months ago, would test 1.6-1.8, since I've managed dosage, three straight months reading at 2.6 (desired range of 2.0-3.0). Occasional spinach, sprouts, garlic and other stuff that pulls INR in different directions... Was annoyed cardio would be ok with INR being seemingly out of range majority of time, which is reason I took over...

Looking back, I would have gone mechanical AVR and lifetime of Warfarin addiction the first go around to avoid redo (but aneurysm would still have necessitated the redo...dammit!) Was generally very cautious first few months, but as confidence grows, so does comfort level with warfarin addition.

 

[pellicle]

Hi

Thank you so much pellicle. I will check out the information. I have not been told I have an aneurysm. My valve has hardened and is elongated. Just general fears of taking warfarin and some of the risks that it has.

well aneurysm is more related to the cause of your valve surgery, for instance if you had congenital Bicuspid Aortic Valve (as I did) then that is a different cause for surgery than if you had rheumatic fever (as say Dick did) ... BAV is strongly linked with aneurysm.

Fears are often based on simple ignorance:

the reality is often that the basis of the fears turns out to be the mismanagement of INR by the medical professionals (as DDT77 is discovering).

Consider your position carefully, read all things carefully and with an eye for "is this the truth or a twisting of the facts to allow you to be sold something" ... seek veracity. Sadly the medical profession is all too often (because of the few warfarin patients they see, who those are, and their lack of engagement with the issues) are the least well informed and act on stereotypes

Make the decision which suits you best and learn fully what the pros and cons of each choice is. Write it down on a list so you can reflect on it. Expect to change your mind a few times. Be wary of the advice given to you by > 60 year-olds who have only ever had one surgery (they still live in their own little world and can't usually think outside of their own limited personal experience).

This isn't like buying a washing machine.

Best Wishes

 

[dick0236]

............. Just general fears of taking warfarin and some of the risks that it has.

I believe that warfarin is probably the most predictable drug I have ever taken. Take it as prescribed, test routinely, "don't run with scissors" and you should have little problem with it. In about one week I will have been on warfarin for 51 years......with one bad experience.......that occurred early after surgery (1974) when very little was known about managing an anti-coagulant with mechanical valves. The upside is that mechanical valves are designed for a lifetime of use. Now that I'm 82+ years old with no surgery in site......the inconvenience of taking that little pill seems a good tradeoff.

 

[Cathy]

Thank you DDT77 and pellicle. I did have a congenital bicuspid aortic valve bit was never told about an aneurysm. I have already changed my mine. I was going tissue all the way but now am questioning that decision. My cardiologist suggested the TAV and said if I chose a tissue valve and OHS that it would be hard to find a surgeon that would replace the valve a third time due to scar tissue.

 

[Cathy]

dick0236 thank you for your reply. It is comforting to know you have taken it for so long without much problems. I have read there is an increase in stroke and you have to be careful of injury and internal bleeding. Just need to feel comfortable with my decision.

 

[dick0236]

............. I have read there is an increase in stroke and you have to be careful of injury and internal bleeding. Just need to feel comfortable with my decision.

I have also heard that the stroke and/or bleeding risk increases with age.....on warfarin or not. Maybe that will become a problem when I get "old".....LOL.........but, so far, so good.

 

[pellicle]

Hi

.... I did have a congenital bicuspid aortic valve bit was never told about an aneurysm.

then you should firmly plainly ask ... as well as doing your own research.

NOTE: By research I mean proper readings, not "FLUFF" which is festered with ads. It may take time to retrain google to stop returning you rubbish that is totally no better than old wives tales. If its not in a peer reviewed journal then its just bullshit and hear say, no better than the rubbish on daytime TV ... also, start structuring your questions in a manner to help Google find stuff.

My cardiologist suggested the TAV and said if I chose a tissue valve and OHS that it would be hard to find a surgeon that would replace the valve a third time due to scar tissue.

weird ... given that he's half right (and the half that's wrong is whats weird.

• TAVR was invented for high risk people with low life expectancies
• TAVR does not have the life expectancy of the valve that the tissue you wore out does, expect around 5 ~ 7 years
• You can have the TAVR "re-fitted" with a "valve in valve" but as you'd think (if you ponder it) that makes the valve diameter smaller (because another valve is shoved inside the existing valve) ... which gives you calcification failure in less time (so, 3 ~ 5 or so as I understand it, perhaps less)
• After that time you'll be needing a conventional OHS to pull that messed up cluster out of you ... you won't be younger or healthier ... so expect a rough ride.

you say in another post:

I have read there is an increase in stroke and you have to be careful of injury and internal bleeding.

which is sort of wrong, because there is no increased risk in stroke by being on warfarin, only by having a mechanical valve and NOT taking your warfarin. There is an increased risk in internal bleeds by not managing your INR properly (which is the number used for determining the proper level of warfarin to be taking.

again, read my blog post on managing INR, don't just skim over it but understand it. If you have questions please ask.

The biggest problem with manging INR is the understanding of what you're doing. Its not hard, but you just simply must understand it.

Best Wishes

 

[pellicle]

to give you an example of good source material, heres the results a search I just did on Google, took me 5 minutes.

https://www.ahajournals.org/doi/10.1161/01.CIR.0000027905.26586.E8

BAV is highly associated with congenital abnormalities of the aorta (coarctation of the aorta and patent ductus arteriosis) and the proximal coronary vasculature. After development, BAV is associated with aortic dilation, aneurysms, and dissection (Figure 2). In light of this, the BAVs should be considered a disease of the entire aortic root.

https://www.hindawi.com/journals/crp/2012/145202/

Optimal management of patients with BAV disease and associated ascending aortic aneurysms often requires a thoughtful approach, carefully assessing various risk factors of the aortic valve and the aorta and discerning individual indications for ongoing surveillance, medical management, and operative intervention. We review current concepts of anatomic classification, pathophysiology, natural history, and clinical management of bicuspid aortic valve disease with associated ascending aortic aneurysms.

https://www.jtcvs.org/article/S0022-5223(17)32681-8/fulltext

is just a good read on the topic

Now, note the sources I've cited:

American Heart Association (aimed at informing clicians and surgeons)
Cardiology Research and Practice (aimed at cardiologists)
The Journal of Thoracic and Cardiovascular Surgery (aimed at surgeons)

this is what I mean by good reliable data ...

Best Wishes

 

[pellicle]

PS

read them carefully, ask questions if you don't understand what it means. However if when you ask your cardiologist about any aneurysm in your future (which may require another surgery) and he / she still doesn't know, then look for a better one (not a quack who doesn't know their business)

 

[Paleowoman]

Hi Cathy - there is a new tissue valve, Edawrds Inspiris Resilia, that became available last year which is designed to have much longer longevity than the previous generation of tissue valves. You might want to ask your surgeon about it. There's a few forum members who've had this valve eg: http://www.valvereplacement.org/foru...s-aortic-valve

 

[pellicle]

Cathy

I recommend you read this thread, there's good advice (it was from before I joined, and I miss some of those great posters like Lionheart, Gym Guy and Ski Girl ... all fit and all active, and lionheart is a tissue-valver)

http://www.valvereplacement.org/foru...315#post761315

the whole thread is gold,

 

[Protimenow]

I've been away for a while - too long. I'm approaching 27 years on warfarin. When you're on warfarin, you'll bruise more than if you weren't. A few weeks ago, I had a fall, and may have torn a ligament in my left leg. The bruising was rather amazing - but certainly not unexpected, and I've had similar bruising from other injuries. It takes a few weeks to resolve, can be painful, but goes away. I'd rather put up with more extensive bruising than with a second surgery or a stroke.

In my case, I DID have what the doctors called a stroke -- I trusted an inaccurate meter. The meter was telling me 2.6 - the hospital told me 1.7. The IS a risk of clot formation if you don't take warfarin, or if you take too little warfarin. At the other end, which I avoid through regular testing, is the internal bleed.

I've been a strong proponent of self testing. I did a daily test a few years ago, comparing available meters to lab results - with frequent tests. I've also reported errors in strips to some of the manufacturers (and may have been partially responsible for recall of a batch of strips by one manufacturer, and leaving the business for another manufacturer). I use the one meter that I have the most trust in - and it isn't the CoaguCheck XS. (The XS is a reasonably accurate meter, according to my testing of a few years ago, and may have gotten even more accurate if they've improved the strips, but seemed to report a bit higher than the labs. I prefer to use my favorite meter, which tends to be .1 or so below the lab I use.)

I've said a lot about my meter of choice in previous posts and don't want to look like I'm a salesperson for this company. If you can't find my recommendation, send me a private message and I'll share this with you.

 

[tom in MO]

The upside of mechanical valves is they last forever. The downside is warfarion and I've been on it for 5 years. To me the warfarin downers are:

• If you have trouble remembering to test or take medication, this could be life threatening.
• If you have arthritis, they don't want you to take NonSteroidal Anti-Inflammatory Drugs (NSAID) due to the risk they will cause a stomach bleed. These drugs are "godsends" to some with arthritis.
• Your INR will be higher. This means it will take longer to clot than a normal human. For example, the usual range for an aortic valve is 2-2.5 INR; it will take 2-2.5 times longer to clot than a normal. Bruises will be 2 times as large.
• Medical procedures will require you to go off warfarin or bridge with a different type of anti-coagulant. I've gone off warfarin for surgery and had no coagulation problems. Most if not all of us do not have problems.
• It costs to test in the US. If you have good insurance that covers medical supplies, it's about $100-200 every 4-6 months for strips. I have good insurance, but the provider of the strips is hell to deal with.

 

[Protimenow]

I've been taking warfarin for nearly 27 years. Many of Tom's 'downers' aren't exactly correct.

The issue with NSAIDs (aspirin, ibuprofen, and others) is not only that they may irritate the stomach, causing it the bleed. The main issue with NSAIDs is that they make the platelets 'slippery.' The platelets are involved in clotting, but not in the same way that thrombin (which is effected by warfarin) does. If you take NSAIDs in addition to Warfarin, you may run into difficulties clotting. The medical profession would rather deal with something that they can reverse and understand (warfarin's effects) than a combination of the effects of warfarin and NSAIDs at the same time.

The usual range for INR depends on the valve you have. I have a 27 year old St. Jude valve. The desired range for my valve is 2.5-3.5.

Tom's statement about an INR of 2.5 means that clotting will take 2.5 times AS LONG, NOT 2.5 times LONGER. (There's a difference - if 'one times longer' means 'twice as long', then wouldn't 'two times longer' be 'three times as long?' This is a verbal thing that most people do and it drives me nuts to see it. With an INR of 2.5, if a person who isn't taking warfarin takes 10 seconds for the blood to clot, a person with an INR of 2.5 will take 25 seconds to clot.

The statement that bruises are 2.5 times as big is hogwash. I've had some monstrous bruises - the most recent bruising occurring when I had a fall and my knee banged against a hard box. The bruise was MASSIVE - much bigger than it would have been if I wasn't anticoagulated. Although it may take 2.5 times as long for the blood to clot, internal bruising could release a LOT more blood, and the pool of blood from an injury can result in very large bruises. (At least, this is how it works for me).

Yes, in the United States, it DOES cost to test. Some insurance will pay for the lab tests and/or self-testing. I usually prefer self testing, with an occasional lab blood draw to make sure that lab and meter values are relatively close to each other. I've tried many different meters over the years. If you own the meter, supplies run between $5-$10 (or so) for each test. There are times when it may take more than one atempt to get a good test. The convenience of being able to test wherever you are is a strong advantage, as is the fact that you don't have to somehow get to a lab and wait for the blood draw.

 

[tom in MO]

Protimenow,

Per NSAIDs, I have found that doctors won't prescribe the NSAIDs arthritis drugs if you are on warfarin, so even though they don't affect your coagulation you are still out of luck.

I was wrong and you are correct, taking 2.5 times longer to clot may not result in a bruise that is 2.5 larger. However one's bruises will be larger with warfarin and you will bruise sometimes w/o even knowing why. My statement that if your range is 2-2.5 (the current range for mechanical valves implanted today) "it will take 2-2.5 times longer to clot than a normal" is correct and is what you also stated. Hogwash means "nonsense." I might have been partially incorrect, but the gist of what I said, "bigger bruises with warfarin" is correct and not nonsense.

Tom in MO

 

[tigerlily]

Hello Cathy and good people here, Cathy, I'm in your predicament but I'm older at 65. I have a tissue valve and it's 12 years old. I will need a replacement some time in the future but don't know when. Currently, the valve has moderate to severe calcification. It's a bit nerve racking because the echo before last called it severe and the most recent called it moderate to severe. I'm questioning those who say the TAVR has only a life expectancy of 5 to 7 years. I thought that they don't know yet because people in good health when they received the valve haven't had them long enough to know how long these valves will last. Since many people who receive the TAVR are not in good health anyway and that is why they receive the TAVR, I think the jury is still out on how long they last. It's certainly worth asking the question anyway. I've been shocked by the interest there is in TAVRs in my case which I should say hasn't been looked at carefully yet. My thought is that they don't know yet if they last any longer than 5 to 7 years and that isn't very long if that turns out to be the case. Changing the subject a bit, there are a lot of things that worry me about warfarin. I've known a lot of people on it including my Dad. Some people seem to do so well. Their diet and exercise hardly seems to be affected at all and others have had a hell of a time. My Dad couldn't wait to get off of it because he was bruising so easily and having to keep his diet consistent constantly was a challenge for him. The testing was not something he enjoyed either. Having said that, he's 89 years old and has other heart issues. He recently got a Watchman and that allowed him to come off the warfarin which he was taking because of Atrial Fibrillation. In my case, I'm in good health except for this valve (knock on wood). I worry about the valve in valve thing and I also worry about multiple surgeries. I wonder if there is any way they can tell what the scar tissue situation is before they open you up. These are just my thoughts. I will be getting more information on the best way to go for me in the future and I will share as it happens. Right now, I'm really interested in the Inspirus Resilia valve by Edwards but I wonder if I can trust they're research. My previous surgeon is using it now and he's a good surgeon so it must have some merit.