How to Choose

[Richie Rich]

Hi All,

It’s been a while since I’ve posted, mainly because everything has been stable and I’ve felt good and not so anxious about my leaking aortic valve and enlarged aorta. Had my annual appointment today and was given the bad news that the valve is now classed as severe and I’m being put on the NHS waiting list for heart surgery.

The consultant said it will probably be six to twelve months before it’s done but he’d rather it be sooner than later. I have to say I’m pretty worried and shocked as I thought it would be years before I needed surgery. He’s booked more tests for me which need to be done before I have an appointment with the surgeon. I’m 49 and thought a tissue valve would be the best option and would avoid warfarin which I’m not keen on as I ride a motorcycle. However the cardiologist told me at my age a mechanical would be the recommended choice. I know It’s months away but I’d like to decide soon as near the time I’ll be too anxious to make the best decision. I’d appreciate any thoughts and advice on this. Thanks Richie.

 

[3mm]

Richie - I'm sorry to hear that you need valve surgery. However, it is good that you are starting the process. I'm 65 and had a mechanical On-X aortic valve installed 10 weeks ago. To use your motorcycle as an analogy: I consider my body, including my heart, to be a valuable and beautiful machine which I carefully and lovingly maintain. INR management requires some self-discipline. You must remember to take your correct dose each day, and you must remember to measure your INR on a weekly or bi-weekly schedule. I consider INR management to be pretty simple. However, I do know people who would not be capable of managing it. You must decide what you can do.

There are forum members who have mechanical valves and still ride motorcycles. My plan for bicycling is to always wear a good helmet, and to carry a basic "stop the bleed" first aid kit. Which is what any cyclist should do even if they do not take warfarin.

Good luck and stay in touch!

 

[pellicle]

Hello, my name is Pellicle and I am an addict

warfarin is my drug of choice

I’m 49 and thought a tissue valve would be the best option and would avoid warfarin which I’m not keen on as I ride a motorcycle.

hasn't bothered me much, I've been on ratsak for 12 years now

Motorcycles




Scooters



(kangaroos bother me more ... and red bellied black snakes
(note: woke individuals should exersize caution as surprised male Australian language is used to describe a difficult situation)


The reality is that as we age the biggest issue isn't warfarin, its the lack of flexibility that our brains have when the head gets a whack ...

https://cjeastwd.blogspot.com/2014/06/skid-lids-aka-helmets.html
I put that together a while back to address a question about survivable impacts (note thats 2014 and I became a warfarin addict in 2011.

It’s months away but I’d like to decide soon as near the time I’ll be too anxious to make the best decision. I’d appreciate any thoughts and advice on this.

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
for reasons I can't work out, people miss this video in that blog post:


I recommend you watch it.

Next, anticoagulation, most of what most people "know" is wrong, so that (to me) means that they know less than nothing (or negative knowledge). Here is a (probably more than you need right now) reference of sorts I've put together

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

When and if the time comes, reach out and I can teach you "everything you wanted to know about managing warfarin, but never even knew to ask"


Best Wishes on your choice (I'm happy with mine)

 

[dick0236]

,
...... I’m 49 and thought a tissue valve would be the best option and would avoid warfarin which I’m not keen on as I ride a motorcycle. However the cardiologist told me at my age a mechanical would be the recommended choice.

It depends on how many surgeries you want in your future. A tissue valve will fail sometime in your senior years, if not before. Mechanical valves typically do not fail. While I have not ridden motorcycles, I have had my share of cuts and bruises over the years while on warfarin. I have never required more than first aid and a bunch of stitches over those years. The "old wives tales" that you have heard about warfarin are simply not true. It is no more difficult to manage than any of the other drugs I take, or have taken. About 3 or 4 months ago l took a tumble down a grass bank.....I broke 3 ribs and did not even bruise.....and I am 87 years old.....and have been on warfarin 56 years....enough said!

If you want a "one and done" surgery, go with mechanical. Incidentally, I just noticed that my mechanical valve is 7 years older than you are.......that's a pretty good testimonial for the durability of mechanical valves.

 

[pellicle]

I just noticed that my mechanical valve is 7 years older than you are.......that's a pretty good testimonial for the durability of mechanical valves.

and its not even the latest model :-D ... the new ones will probably last twice as long ;-)

 

[Timmay]

I’m 52 and chose mechanical. I remember being very unsure and anxious about the valve choice. At this point - it is quite clear what my choice should have been and luckily (blessedly), I made the right choice.

Open Heart Surgery might be normal for the doctors doing it, but make no mistake - it isn’t normal. It may be one of the most physically and potentially emotionally traumatic things you’ve ever done. Getting a tissue valve at such an early age GUARANTEES that you will be back in the hospital doing it again. Maybe even twice. I’m so happy I made this choice to put the odds in my favor of doing it only once.

Docs here in the USA love to say “get a tissue valve and then we’ll just do a TAVR (aka TAVI) later. However, there is no guarantee of being eligible for that TAVR.

Additionally, many tissue valve people end up on a blood thinner anyhow. So meh. There goes that advantage.

I’m not against tissue valves. In fact, if I was 60 I probably would have done it (wrongfully; I think the best age to choose tissue is around 65).

You will have to make your own choice. For me, Warfarin is not a big deal. I have a pill box that guarantees I take it every day. I put a small capsule on my keychain and have some spare warfarin in there “just in case”. Because of these things, I have NEVER missed a dose. And because of that, I have NEVER gone under 2.0 INR. I’m a pretty active guy and I cut and bruise myself all the time. I don’t notice much of a difference.

Warfarin is the easy part of the meds. The harder part is that I am now on the radar of the cardiologists which means blood pressure meds, statins, and aspirin. Ugh. Lol.

You choose. But make sure you make that choice “in the know”. If you choose tissue then expect multiple operations in the future. Multiple. If you choose mechanical, expect to have a pill box and expect to prick your finger once a week for testing. Expect that future operations might require bridging and/or interesting dosing strategies to make you safe for the operation.

 

[Chuck C]

and its not even the latest model :-D ... the new ones will probably last twice as long ;-)

Exactly! I'm expecting to get at least 114 years out of my mechanical valve.

 

[Chuck C]

Hi Richie.

I’m 49 and thought a tissue valve would be the best option and would avoid warfarin which I’m not keen on as I ride a motorcycle. However the cardiologist told me at my age a mechanical would be the recommended choice

Your cardiologist is correct. Glad to see that he's following the guidelines. There is a big marketing push by the tissue valve manufacturers to get cardiologists and surgeons to go with tissue valves for younger patients, outside the guidelines. Glad that your cardiologist has not fallen prey to this.

At age 52, I went back and forth between choosing a tissue or mechanical valve. I was told by two different surgeons that at the young age of 52 I would probably get about 10 years from a tissue valve. It could be a lot less than that. A small number of young patients get very lucky and get significantly longer than that.

I expect to live a lot more years. Both of my parents are 81 and still going strong, appearing to have a lot of runway ahead of them. When I played out the numbers on my expected future procedures, given my age of 52, I did not like the number of future procedures I was facing with a tissue valve. This forum helped me a lot, because I was able to communicate with people who had been on warfarin many years and lived active lives. I was active and before I found VR I was believing the myth, propagated in large part by the tissue valve industry, that you can't live an active life on warfarin. That is nonsense. I run, bike, do jiu jitsu and box. Being on warfarin now for 33 months I can say that most of the information you will find on the internet about warfarin is myth.

For young people, the ones who should not get a mechanical valve are the ones who are contraindicated for warfarin. Your cardiologist is recommending a mechanical valve, so I imagine that he has taken this into account and he believes that you are not contraindicated.

Also, people who are not good at compliance with taking medication should choose a tissue valve and not a mechanical valve, even if they are young. Personally, I have found warfarin management easy. I use a pill box for each day of the week and take my warfarin at the same time every morning. There are a surprising number of people that have trouble with simple medication compliance. I would suggest being honest with yourself about this and if you are one of these people who have trouble remembering to take your medication then choose tissue. I also test myself weekly. This is the best way to go, although many seem to do ok getting their INR checked at the lab. So, I recommend self testing, and if you choose not to self test, get your labs done like clockwork when you are supposed to. Again, I would be honest with yourself. If you are the type of person who gets busy and is likely to blow off their lab visit for weeks or months, then choose a tissue valve.

The choice is yours and yours alone. Your cardiologist will not be the one taking warfarin if you go mechanical and he will not be the one getting repeat surgeries if you choose tissue. Having said that, for my two cents, I believe he is correct in recommending a mechanical valve at your young age, provided you can be responsible in taking your medication and test your INR regularly.

 

[jimbob123]

I'm 51 and opted for a tissue valve (surgery was in Edinburgh 5 weeks ago). My surgeon was very careful to not steer me one way or the other, which is both good and bad. So I went for tissue and I expect to have to go through it all again sometime in the future, hopefully not for many years.

I didn't fancy warfarin as I do a lot of woodworking, gardening, and general DIY stuff and cuts happen, and it seems like it might become tedious. But also, I didn't want the risk of having a valve that I could hear clicking.

Interesting that you have a wait list. I was already an in-patient in Perth as I had presented with symptoms. I was told that as an in-patient I could expect surgery in a couple of weeks which happened), but as an out-patient I might have to wait six months (which others on my ward had done). So getting "in the system" seemed to help me.


Jim

 

[Richie Rich]

Richie - I'm sorry to hear that you need valve surgery. However, it is good that you are starting the process. I'm 65 and had a mechanical On-X aortic valve installed 10 weeks ago. To use your motorcycle as an analogy: I consider my body, including my heart, to be a valuable and beautiful machine which I carefully and lovingly maintain. INR management requires some self-discipline. You must remember to take your correct dose each day, and you must remember to measure your INR on a weekly or bi-weekly schedule. I consider INR management to be pretty simple. However, I do know people who would not be capable of managing it. You must decide what you can do.

There are forum members who have mechanical valves and still ride motorcycles. My plan for bicycling is to always wear a good helmet, and to carry a basic "stop the bleed" first aid kit. Which is what any cyclist should do even if they do not take warfarin.

Good luck and stay in touch!

Thanks for the advice. I will have no problem remembering to take warfarin as I’m on medication which I put into a seven day pill box and take every morning. I’m more concerned about crashing my bike and bleeding to death, but maybe it’s not as risky as I first thought. I hope you are doing well after the operation. Richie

 

[pellicle]

Morning

Personally

I’m more concerned about crashing my bike and

...being a quadriplegic or something worse. As per my helmet post as we age (warfarin not included) our risk of death from severe brain trauma goes up significantly.

But going out and enjoying the experience is better than sitting in a recliner.

So far however my worst accidents have bee being hit by cars on my bicycle.

So I just do my best to stay upright and having done many rider training courses over the preceding decades hope to keep practicing those skills.

Best Wishes

 

[Protimenow]

The thought of bleeding to death from any kind of injury when you're on Warfarin is mostly that - a myth.

Warfarin has to do with clotting - an INR of 3 means that it takes 3 times the normal (INR 1) time to clot. For most small cuts, this isn't much of a problem - I've had many cuts - instead of taking, perhaps, 15 seconds to clot and close, it may take 45 seconds if my INR is 3. But for most cuts, it's common to put a towel or kleenex or other thing over the cut to stop the bleeding - whether the INR is 1.0 or 3.0 - with the pressure and surface to form the clot onto, there's not much difference in clotting time.

I've had considerably more bruising, perhaps, than if my INR was 1.0. I once dropped a heavy hunk of marble on my foot - no broken bones, but a lot of bruising that took a while to heal.

I've had minor procedures done even when my INR was 'high' -- a pacemaker implant with an INR about 3 was a simple procedure for my cardiologist.

I broke two ribs in September - aside from pain, there was minimal bruising. The fact that I was on warfarin didn't make much difference.

Defining warfarin as 'addictive' isn't really the best description - there's nothing addictive about it - but, to be clear, you have to be dependent on it to make sure that clots don't form on the valve. You don't go through withdrawal if you stop taking it - you just run the risk of death if you stop completely, for a long enough time. Your body may not even give you warnings about a clot -- you'll probably know it when it hapens.

I've had my mechanical valve since I was 41 years old - I'm now 115 years old (not really) and the valve is working just fine.

I self test and self manage. I make up my pills in a pill box weekly and (rarely) adjust the dose based on my INR.

If you use a clinic, they may STILL want you to self test. And if you use a clinic, don't listen to their crap about 'your INR has been stable for three months, so you don't have to come back for a month.' If they tell you something like this, continue self-testing, consider self managing (Pellicle is a great source of information about this), and consider finding another 'clinic' - they clearly don't know what they're doing.

For me, the choice was clear - mechanical. If I was even 70 years old, I would still go mechanical - who knows how much time is left? I can't count on TAVR being suitable when my tissue valve starts to fail. I can't be sure if another OHS would be an option. I would prefer a valve that stopped working when I do - rather than having a potential time bomb working my chest, just waiting to slowly fail.

If your symptoms necessitated emergency surgery, I'm sure that you would get it. Six months or a year means that you're not there yet - and gives you a lot more time to obsess about which type of valve to use.

 

[dick0236]

Thanks for the advice. I will have no problem remembering to take warfarin as I’m on medication which I put into a seven day pill box and take every morning. I’m more concerned about crashing my bike and bleeding to death, but maybe it’s not as risky as I first thought. I hope you are doing well after the operation. Richie

I can understand your concern although I think it is unfounded. I have been on warfarin for 56 of my 87 years, have lived a completely normal life, had the bumps and bruises like everybody else and haven't come close to bleeding to death.....or even needed more than "first aid" and a few stitches. If you don't want to go thru this again......get a mechanical valve. If you don't mind future heart procedures go tissue.......and cross your fingers.