Life after Mechanical Valve --- 31 years old

[Heart_Fit]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

 

[John-3919]

You and I seem to be in very similar situations. I had a repair about 5 years ago which didn’t hold up, and I’m due for a mechanical replacement next month. I was very active - big runner before I had to stop due to my repair failing.

My cardiologist at Northwestern said he has multiple patients with mechanical heart valves over 50 years old, and that as long as you don’t have other co-morbidities an artificial valve doesn’t really have any effect of life expectancy. The biggest risk comes from mismanaging your INR which could either lead to a bleeding event or a stroke.

Best of luck with your replacement!

 

[Protimenow]

Heart_Fit -- INR management IS that easy for many of us here. You have to understand how warfarin works to most effectively manage it.
Post-op, you (or your doctors) will have to determine the appropriate dose - it often varies from individual to individual. It also takes a while, post-op, for your body to adjust to warfarin (maybe?).
Once you've determined the appropriate dose to keep your INR in range, you should commit to self-testing weekly -- get yourself a meter, get supplies. Depending on your insurance coverage, you may have to go to a clinic -- but there's nothing keeping you from buying your own meter and supplies -- some clinics are comfortable with testing every two weeks, or even less often.

It helps to be consistent with your diet -- this will help you keep your INR in range. Binging on greens if you don't normally eat a lot, or dropping them from your diet if you do normally have a lot, can change your INR. For your INR to be off for a day or two is no big deal.

Remember -- if you're looking to adjust your dosage, you won't see results for two or three days. Don't think that, if your INR dropped, loading up on warfarin will change your INR the next day -- instead, it can cause your INR to spike in two or three days. If you remember that it takes a few days to see any results from changed doses (up or down), you'll be better able to maintain your INR.

I may have made this sound complicated. It isn't. It's simple. There are many on this site who can help you with dosing or refer you to dosing charts.

As far as your activity level -- it probably doesn't change much. You may actually be more active, and more able to do things that you didn't have strength for, because your heart will be operating more effectively.

It may make sense to avoid some activities where you get banged around - anticoagulation will result in bigger bruises - but if you read through more stuff on this site, you'll see that people are doing all kinds of athletic activities -- even full contact.

Having a mechanical valve WILL change your life -- but for the better. I wouldn't fear anticoagulation if I were you.

(There's also the possibility that, before your 90th birthday, a new medication would have been developed to replace warfarin and eliminate the need for drug testing. It's also possible (perhaps) for a new type of mechanical valve to come on the market that doesn't require anticoagulants and that may even be an easy to install replacement or enhancement to the mechanical. I'll probably see neither of these, and if there's still a livable planet, you might)

 

[pellicle]

HI

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

It saddens me to hear these questions because it can only come from the impressions that the medical profession instill in you with their bullshit. So:

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?

Not only do we have in our midst here competition power lifters, endurance runners and general sports men but you can also find stuff like this around if you look for it:

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749

When I was 23 I was diagnosed with aortic valve disease, which meant that one of the four valves controlling the flow of blood to my heart was failing to function properly. During the 1990s my condition began to worsen, and mountain climbing became more difficult. By the late 1990s even climbing stairs was exhausting. So in 1997, at age 46, I underwent heart valve replacement surgery and received a mechanical heart valve. Five weeks later I was back climbing mountains with a new determination. In my previous attempts to reach the peak of Everest, it wasn't my mechanical heart valve that held me back: twice it was the altitude and illness, and twice the weather conditions forced me to give up on my quest for the peak. Each time, though, I was able to take something important with me from my trip.

2. Is warfarin as easy as the forum makes it sound?

being one who does his best to teach people how simple it is I can only say that the medical profession has only got memory of the worst cases and the patients who don't take their drugs as prescribed then lie about it.

One of my blog posts:
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
and another on a more complext topic of perioerative management
http://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
I guess that simplicity comes down to being organised and being methodical. If however you are a combination of disorganised (and unwilling to change) inept (not methodical) and stupid.

I work with people to help them to learn INR management and have even got a success story with a young lad in his 20's who enjoys an occasional (like any occasion) binge drink. Since starting with him he's been on target and in range ... the (inept fools who were the) clinic managing him were unable to achieve that in the 8 months prior.

3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

All the evidence suggests that with the mechanical valve and AC therapy that accompanies it you'll get a "normal life span". @dick0236 here is over 80 and has been on warfarin for over 50 years.

Myself I cross country ski (although far less now that I'm back in Australia again), bushwalk, ride a motorcycle and an electric scooter. Since being on a mech valve I've also backpacked in europe, continued to XC Ski and generally act like a 30 year old (I'm 55)

I'm sure some others will include their stories.

 

[pellicle]

@Heart_Fit

not wanting to contradict Protimes findings, but this observation:

It helps to be consistent with your diet -- this will help you keep your INR in range. Binging on greens if you don't normally eat a lot, or dropping them from your diet if you do normally have a lot, can change your INR. For your INR to be off for a day or two is no big deal.

is not the case for everyone. It is the case for some, but as for myself I can say not. Current main stream view (and the main stream changes like every 5 to 10 years) is that eating more greens gives a more consistent INR than starving yourself of them.

Further, myself I have a beer or a glass of wine most days (and some days both ;-)

 

[dick0236]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

At 31 and after your previous repair surgery a mechanical valve makes a lot of sense. I had my one, and only, mechanical aortic valve implanted when I was also 31 years old.........almost 84 now. Here's my quick answer to your questions:

1. I've done pretty much everything I've wanted to do.......except sky-diving (not really). The last time I was in the gym was this AM. Still use treadmill and weight machines.

2. I've gone the last 44 years on Warfarin with no issues.....had my one and only stroke about 8 years after surgery ......when little was understood about managing warfarin after mechanical valve surgery. Now it is as simple as taking my pill daily and self-testing (ten minute test once a week for me)

3. They told me I'd get 50 years out of my valve.......I've gotten 52+ out of it.....so far. I'll probably not make 100.....but the valve will probably still be working when I go.

 

[Keithl]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

I just had my AVR at 58 about 6 months ago. I am not overly active, but work out 4 times a week. At 6 weeks I was back to my normal work out. The key is start moving every day. I was walking a little on my treadmill every day so by the time I went to cardic rehab, they laughed and said why was I there as I was doing far more than they would have had me doing.

warfarin is easy. Once you find your dose stick to it. Understand what dietary items can impact the INR and be prepared to adjust if you vary your vitamin K input by large swings. A few other dietary items you need to,watch, but not really a big deal. Sign up for home INR testing as soon as they will let you and if possible buy your own meter.

I wish I make 100, but in all likelihood something other than the valve will kill you and I. Mechanical valves and warfarin have excellent track records.

 

[Superman]

Coming up on my 29th in November with a mechanical valve. 10 since my aneurysm replacement. I was 17 went I started taking Warfarin and plan to for a lot longer.

I work out 4 or 5 days a week. Went canoeing and horseback riding today. Hiked a bunch yesterday and will be hiking a lot more tomorrow. On a little vacation getaway and having no trouble. Just bring my meds with me and live. Even enjoying adult beverages with dinner.

 

[btlRickas01]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

Mind if I ask what was the brand of heart valve that failed and how did it fail?

 

[cherbam]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

Hi. I had triple valve replacement 15 yrs ago and I have never been better. I also work out and lift weight (as I have for years). It should not be a problem. The warfarin is also easy to manage. It takes a little adjusting the med at first but you will get used to it.

 

[Rob Burgess]

I underwent aortic valve and root replacement 4 years ago with a mechanical valve. Warfarin really hasn’t changed my life much other than monitoring my INR weekly. I run 30 to 40 miles a week and compete in half marathons. I’m in gym lifting 5 days a week and am in better shape now than I have ever been. My surgeon did not recommend any restrictions other than contact sports but I did cut out downhill skiing and mountain biking.

 

[Superman]

17.5 miles hiking today! Personal best.

 

[pellicle]

Mind if I ask what was the brand of heart valve that failed and how did it fail?

It appears to be "Natures Own" as it was written as a repair.

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well

 

[cherbam]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

Hi. St. Jude mechanical

 

[Protimenow]

@Heart_Fit

not wanting to contradict Protimes findings, but this observation:



is not the case for everyone. It is the case for some, but as for myself I can say not. Current main stream view (and the main stream changes like every 5 to 10 years) is that eating more greens gives a more consistent INR than starving yourself of them.

Further, myself I have a beer or a glass of wine most days (and some days both ;-)

Pellicle didn't contradict me -- yes, recent research is suggesting that taking Vitamin K1 (using pills, or just eating green, leafy vegetables) can establish a baseline of K activity in the body - and this baseline makes it easier to establish a stable INR. This makes sense.

After researchers figured out how Warfarin works - disrupting the action of Vitamin K1 in controlling the clotting process, they figured that if the person taking warfarin completely avoided Vitamin K, anticoagulation would be easier to manage. The manufacturers of Coumadin even came out with a 'Coumadin Cookbook' (out of print for some years) that had recipes that avoided copmonents that had Vitamin K. Again, complete avoidance of Vitamin K1 doesn't appear to be necessary -- and there are physical benefits that go with taking K1.

My comment about consistency stands -- if you're eating foods that contain K1, try to eat consistent amounts. If you avoid it one day and binge on it another, this could cause your INR to take strange bounces. Keep it pretty consistent, and when you establish the appropriate dose of warfarin to compensate for the K1 in your system, you'll be able to keep your INR pretty consistent.

As far as drinking beer or wine -- I'm not convinced that drinking has much effect on INR (with the exception of red wines, which may have some components that will reduce INR).

 

[flex131]

Hello
Got my St.Jude Mech Valve at 22. I am 45.
1) I do it all, Beach Volleyball (tournament), Softball team, used to play flag football (body cant take it anymore), Ski, spearfish and dive.
2) Mini stroke like 6 years in was not taking Warfrin correctly. Got lucky, never missed a monthly blood work after that.
3) Dont really know but my goal is to beat Dick0236

 

[carolinemc]

Hi Everyone,

About 2 years ago I had an aortic valve REPAIR that unfortunately hasn't held up well. In the next few months I'll be going in for a valve replacement. I have my 'heart' set on a mechanical valve.

A couple questions i think i know the answers to, but Id love to hear more personal experiences...

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up?
2. Is warfarin as easy as the forum makes it sound?
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around

Thank you so much! This forum is awesome.

I had my St. Judes' leaflet put in, in 2001 at age 36, been still leading an active life. You can still keep up with your regular activities even with the warfarin. It is better to be consistent in your diet, activity and living period. It is easy to life with warfarin, just stay consistent and active. Good luck in the zipper club and keep active.

 

[tom in MO]

1. After surgery can i lead an active lifestyle? I work out (until recently) about 5 times a week. I like to run, hike and lift weights. Will i be able to return to all of this in full force after I am all healed up? Yes. You will be restricted from doing things where you hold your breath under great strain, such as some isometric and weightlifting exercises. I believe this elevates your blood pressure.
2. Is warfarin as easy as the forum makes it sound? Yes it can be. However, some people have trouble remembering to take their pills and test and if you forget, this can put you in danger. You don't have to eat a consistent diet, you can "dose the diet or diet the dose." Many people home test so they can "dose the diet." If you are obsessive/compulsive some people obsess about their warfarin and INR and this is a significant source of stress for them. If you have or get arthritis being on warfarin will keep you from taking NonSterodialAntiInflamatoryDrugs (NSAIDs). These can provide significant relief, but many doctors think they are over prescribed or shouldn't even been taken in the first place. If you wish to home test, you will need to have a good paying job or one with good healthcare benefits. You'd need that with a tissue valve as well, since they need to be replaced.
3. What is the longterm outlook? I'd love to make it 100 and still be kicking around I believe a mechanical valve would be the best choice for no future heart problems. A tissue valve at your age will most likely lead to valve failure just like your current valve. They last an indeterminate amount of time depending upon your genetics, body chemistry and the valve itself. There is always the risk that the echos and cardio visits will not catch the failure point in time (particularly if you lose your insurance). This is the same risk you live with now. With a tissue valve at your age you just kick the can down the road until the next operation.

 

[pellicle]

@Heart_Fit

I would agree with the majority of what Tom wrote, however I feel that (not knowing your budget or circumstances) that this point needs a different view:

... If you wish to home test, you will need to have a good paying job or one with good healthcare benefits.

This is simply not the case, for sure you will need to do more than "sit back and take it" when the Dr (motivated by his income streams) says this but you can (yes, even in the USA) find a Dr who will

• allow you to self test and self administer (some time to build their confidence will be needed)
• its not expensive and machines like the Coaguchek are available and stips are available

Let me give you a for instance. eBay has many good sellers with the Roche Coaguchek regularly listed for around US$600, the strips are commonly US$99 for a pack of 24 strips. That works out to less than $5 per test. So even without a good job with good health care benefits (perhaps soon to be a thing of the past in the coming economic times) you can access self testing for less money than the cost of transport of going to a clinic (not to mention parking and time).

I am not alone on this forum for being a self tester and administrator, and that includes members in the USA ..

I've had my Roche Coaguchek since late 2011 and its done more than one test per week (my blog will reveal some of the whys on that), which is about 400 weeks. Thus my machine (which still works fine) has come to cost an additional $1.5 per test in that (and it keeps getting smaller).

Tom makes a good point about obsessing with INR, which I would also counsel against too. However weekly testing, documenting INR and a simple system of what to do and why will mean you can (if you choose to) make midweek tests to allay uncertainty and to gain valuable insight into how your body works with the drug (and what you eat and drink). As long as you keep a steady hand on the tiller in administration of warfarin and are consistent in taking your doses (consistent means not missing them) you'll be fine.

I would say that my Coaguchek has been instrumental in enabling me to be free to go and travel (even live OS) and has freed me from feeling tied to a clinic.

Reach out if you want more specific guidance.

 

[Jamey T]

As usual, I agree nearly one hundred percent with pellicle. The only thing I had to change in my life was after my St. Jude was installed, my cardiologist asked me to give up my position as a volunteer firefighter.

I still ski, motorcycle, fish, kayak, hunt, hike and do pretty much anything else I used to do, or might want to do now, including drinking. You just have to remember to take your dose EVERY DAY! I got very anal retentive about it and have a spreadsheet of every INR test I have ever had, but my spreadsheet is nothing compared to what pellice can do. Do not be afraid to reach out to him when he offers, he is an excellent teacher.

I also self test, and I bought my meter and test strips out of pocket, and luckily have a doctor that understands that I have a vested interest in my anti-coagulation treatment. I test at a lab when ever he asks me to, but he knows I watch myself with my weekly tests.