New but Lurking for Months!

[heartlikeawheel]

Hi,
I've been reading threads here for awhile and figure that it's time to participate! I'm a guy and I'll be 58 in July and have appointments this coming week with a surgeon and cardiologist as well as a CT and Ultrasound of the neck (UVa in my hometown). I'm told I will need surgery soon for my BAV and I figure they'll do something about my aneurism and possibly the MVP as well.
I've known about my valve since I was a teen and have never really had symptoms. But it is heavily calcified and stenotic at this point - considered severe.

It has been very useful to read folks' experiences and words of wisdom on this site. I came here with some ideas already entrenched about what valve I would want based off a little research (I had been thinking the Inspiris) but now I am not so sure after hearing all the pros and cons of tissue vs mechanical as well as the various brands. I wonder also whether it makes any sense at all to consider what technical or other advancements might come down the pipe in the future.

Of course an immediate concern is hospital visits in the time of Covid-19. Lots to think about vis-à-vis risk/reward! Thanks to all of you for already being of help.

 

[dick0236]

Welcome "heartlikeawheel". I think you will find this forum the best site for info and support........read on.

 

[LondonAndy]

Welcome! Being a Genius, I did my research into valves AFTER I had had mine inserted! But in my defence this was because I had been admitted to hospital by ambulance as an emergency case, having not been previously actually diagnosed, after had what I thought was a heart attack but fortunately was 'only' a "Cardiac Event". So all my decision making was done in hospital, in what I recall was something like a 10 minute chat with the surgeon, and revolved around whether to go tissue or mechanical - no more detail than that - ie no choice of manufacturer etc.

However, having said that I am happy with the choice I made of mechanical, and the choice of valve made by the surgeon. In some respects I think this lack of consideration (on my part) has worked out well - having seen how worrying some members here have found it to know they will need a valve at some point, but not exactly when, and then to consider all the options. That can be pretty stressful. I just knew it needed doing or I would die, and had confidence in the hospital team to do what was needed.

So I wish you well in your research and decision making, and I agree: this site is an excellent resource, with helpful members and good information. Despite my uneducated start, I have learnt a lot here and continue to enjoy keeping in touch with new developments.

 

[heartlikeawheel]

Welcome "heartlikeawheel". I think you will find this forum the best site for info and support........read on.

Thank you! It doesn't seem as commercial as another site I found online.

 

[heartlikeawheel]

Welcome! Being a Genius, I did my research into valves AFTER I had had mine inserted! But in my defence this was because I had been admitted to hospital by ambulance as an emergency case, having not been previously actually diagnosed, after had what I thought was a heart attack but fortunately was 'only' a "Cardiac Event". So all my decision making was done in hospital, in what I recall was something like a 10 minute chat with the surgeon, and revolved around whether to go tissue or mechanical - no more detail than that - ie no choice of manufacturer etc.

However, having said that I am happy with the choice I made of mechanical, and the choice of valve made by the surgeon. In some respects I think this lack of consideration (on my part) has worked out well - having seen how worrying some members here have found it to know they will need a valve at some point, but not exactly when, and then to consider all the options. That can be pretty stressful. I just knew it needed doing or I would die, and had confidence in the hospital team to do what was needed.

So I wish you well in your research and decision making, and I agree: this site is an excellent resource, with helpful members and good information. Despite my uneducated start, I have learnt a lot here and continue to enjoy keeping in touch with new developments.

Thank you LondonAndy! Sounds like you had quite an adventure. It's hard to blame oneself or others for choices made during an emergency - so piece of mind in a way what with the alternative - and yours seems to have worked out well! How complicated is it to manage blood thinners? Much of an issue? Easy to get the meds you need?

 

[LondonAndy]

How complicated is it to manage blood thinners? Much of an issue? Easy to get the meds you need?

For me I have found it generally easy to manage Warfarin - though there is both a period of instability in the first few weeks after surgery, and a learning curve. I still make the odd mistake that takes me slightly out of the range I am supposed to keep.

I am a bit of a gadget enthusiast, so have my own meter to self-test my INR whenever I want, which is usually weekly. As an insulin dependent diabetic I am used to pricking a finger for a blood sample and applying the drop to a test stick, and the INR machines are just the same, though needing a bigger drop of blood. Having my own meter means that I am not tied to an anticoagulation clinic - I travel as and when I want, emailing a test result to my clinic when needed, though for me this is more of a formality - I manage my own dose and have the support of the clinic if needed. There are many threads on here about dose management, or you can ask away. The key thing is to make small adjustments, to avoid the risk of "yo-yoing" given that it takes 3 days for the full effect of a dose to have effect on the bloodstream.

Having your own meter is considered the best way to manage INR here in the UK - see http://bit.ly/NICEreport for some reasons and stats.

My meds are prescribed by my doctor and easy to get from a pharmacy. I am issued with 1mg, 3mg and 5mg tablets to make up whatever dose I need. So for example if it needs to be 7mg I take a 5 and two ones.

 

[heartlikeawheel]

For me I have found it generally easy to manage Warfarin - though there is both a period of instability in the first few weeks after surgery, and a learning curve. I still make the odd mistake that takes me slightly out of the range I am supposed to keep.

I am a bit of a gadget enthusiast, so have my own meter to self-test my INR whenever I want, which is usually weekly. As an insulin dependent diabetic I am used to pricking a finger for a blood sample and applying the drop to a test stick, and the INR machines are just the same, though needing a bigger drop of blood. Having my own meter means that I am not tied to an anticoagulation clinic - I travel as and when I want, emailing a test result to my clinic when needed, though for me this is more of a formality - I manage my own dose and have the support of the clinic if needed. There are many threads on here about dose management, or you can ask away. The key thing is to make small adjustments, to avoid the risk of "yo-yoing" given that it takes 3 days for the full effect of a dose to have effect on the bloodstream.

Having your own meter is considered the best way to manage INR here in the UK - see http://bit.ly/NICEreport for some reasons and stats.

My meds are prescribed by my doctor and easy to get from a pharmacy. I am issued with 1mg, 3mg and 5mg tablets to make up whatever dose I need. So for example if it needs to be 7mg I take a 5 and two ones.

I guess it becomes second nature. I will do some more research. Thanks!

 

[jcgtok17]

This coming Friday is the 3 year anniversary of my AVR surgery. Here in Tokyo, there was little talk of mechanical value options, despite my age at the time (50). St. Jude Medical Trifecta GT (27mm). So far so good, we can still run outside in the parks here, 168km so far in April.

 

[heartlikeawheel]

This coming Friday is the 3 year anniversary of my AVR surgery. Here in Tokyo, there was little talk of mechanical value options, despite my age at the time (50). St. Jude Medical Trifecta GT (27mm). So far so good, we can still run outside in the parks here, 168km so far in April.

At your young age I would have thought a mechanical at the forefront of discussions. I mean the need for possible reoperations is an important consideration. Did you ask about it? At any rate it sounds like you're doing great! And maybe they can do some kind of TAVR when you need a new one.

 

[user 16827]

the need for possible reoperations is an important consideration.

Welcome @heartlikeawheel

This was my biggest driver to go with a Mech valve

 

[Protimenow]

I won't make a suggestion here -- but I may come close;

If I was 58 again, I would certainly consider TAVR, a less invasive procedure than cracking ribs or sternum to replace the valve. I would consider that this procedure was only recently approved (in the United States) for people who aren't at high risk. I would also consider that there's no long-term survival statistic that can be relied on, and that, if this would need to be replaced with another device, it would have to be smaller than the first one, reducing the area of blood flow.

Personally, I wouldn't get a tissue valve. Although they claim to have models that will last, perhaps, 20 years, at 78, you may not be a good candidate for another valve - partially because of the risk that you won't be able to recover from the general anesthesia, and because of the scar tissue that results from any open heart procedure. Plus, I'm not sure that, by the time your tissue valve fails (and in some of us, it's been as few as two years), there may not be a good, proven non-invasive or minimally invasive repair. To me, I wouldn't want to worry about having to, eventually, probably dealing with valve failure.

If you have other repairs that require cracking the chest, replacement of a valve will probably be a no brainer - if they're in there, a new valve should be preferable over a TAVR.

The manufacturers of the On-X valve seem to push the advantages being that you won't have to keep your INR so high - as if a difference between 1.5 and 2.5 (with the On-X) from the 2.5-3.5 of most mechanical valves would be a life changer and are worth choosing this valve over the other, proven valves. INR is pretty easy to manage, and there are good sources here and elsewhere for help. It's safer, even with an On-X, to keep your INR between 2.0 and 3,.0 - the risk of clots with an INR below 2.0, for any mechanical valve , is just too high.

Managing your INR isn't that big a deal. Post-Op, it takes a while until your body settles down and you csn establish the appropriate dosage. A clinic or your doctor will probably want to help you to establish the correct dose. Afer that, you may be able to self-test and self-manage (or leave the dosing advice to a doctor or clinic). There are good sources here and on the Internet who can help you with your dosing.

I hope that this information - though not advice - was helpful.

 

[heartlikeawheel]

I won't make a suggestion here -- but I may come close;

If I was 58 again, I would certainly consider TAVR, a less invasive procedure than cracking ribs or sternum to replace the valve. I would consider that this procedure was only recently approved (in the United States) for people who aren't at high risk. I would also consider that there's no long-term survival statistic that can be relied on, and that, if this would need to be replaced with another device, it would have to be smaller than the first one, reducing the area of blood flow.

Personally, I wouldn't get a tissue valve. Although they claim to have models that will last, perhaps, 20 years, at 78, you may not be a good candidate for another valve - partially because of the risk that you won't be able to recover from the general anesthesia, and because of the scar tissue that results from any open heart procedure. Plus, I'm not sure that, by the time your tissue valve fails (and in some of us, it's been as few as two years), there may not be a good, proven non-invasive or minimally invasive repair. To me, I wouldn't want to worry about having to, eventually, probably dealing with valve failure.

If you have other repairs that require cracking the chest, replacement of a valve will probably be a no brainer - if they're in there, a new valve should be preferable over a TAVR.

The manufacturers of the On-X valve seem to push the advantages being that you won't have to keep your INR so high - as if a difference between 1.5 and 2.5 (with the On-X) from the 2.5-3.5 of most mechanical valves would be a life changer and are worth choosing this valve over the other, proven valves. INR is pretty easy to manage, and there are good sources here and elsewhere for help. It's safer, even with an On-X, to keep your INR between 2.0 and 3,.0 - the risk of clots with an INR below 2.0, for any mechanical valve , is just too high.

Managing your INR isn't that big a deal. Post-Op, it takes a while until your body settles down and you csn establish the appropriate dosage. A clinic or your doctor will probably want to help you to establish the correct dose. Afer that, you may be able to self-test and self-manage (or leave the dosing advice to a doctor or clinic). There are good sources here and on the Internet who can help you with your dosing.

I hope that this information - though not advice - was helpful.

Thank you for your perspective. How much of an issue is diet (and alcohol) with managing a mechanical valve? And are there constraints as to what you can do? How about travel? It would be nice (whether mechanical or tissue) to be able to lift weights, play tennis, jog, ride my bike etc. without having fear for something failing or otherwise compromising me. Since I haven't had much in the way of symptoms to this point I know I will be bummed if I can't get back to a level of fitness and activity I'm used to. Though given the alternative not much to do about it.

 

[LondonAndy]

Thank you for your perspective. How much of an issue is diet (and alcohol) with managing a mechanical valve? And are there constraints as to what you can do? How about travel?

Not sure if you were addressing the question specifically to Protimenow, whom I am sure will also comment, but here is my view.

You will find many threads on diet, and a regular answer too: "dose the diet". In other words, with moderation you can broadly eat and drink what you like, and using your trusty meter measure your INR and see what effect it has had and adjust your Warfarin dose to suit. It is possible some things will have more effect on you than on others, but I think fellow forumites will agree that some of the things we are warned about actually have less effect than you might think. For example, I am weird, and like broccoli, something that is high in vitamin K and that we are supposed to be cautious of, and eat consistent amounts. I am entirely inconsistent, and also with my alcohol consumption, which is generally quite low, eg a glass or two of wine with a meal, but not every day. I seldom have to adjust my dose, but when I go on holiday and the attractions of the poolside bar might perhaps lead to an increase in alcohol consumption, my INR goes up and I reduce my dose. Or is that because of the sunbathing, or change in diet? Or the bars in the evening too?

There are, of course, other health reasons not to drink larger quantities of alcohol consistently.

So having a meter is key to giving freedom of diet, knowing your alcohol limit (or dealing with it when consumption changes) and for international travel. I can't say what the answers are for you, and some may not have the same experience - we are all different, and hopefully others will comment too.

Actually the things that affect my INR most are having a cold (INR drops even before I have symptoms) or going on antibiotics (INR up).

 

[LondonAndy]

Here is me INR testing in the Canary Islands in February. Cheers!

 

[pellicle]

Hi and welcome

the differences between Mech and Tissue are well clarified and boil down to this: All valve surgery exchanges valvular disease for prosthetic valve disease. Tissue prosthetic valve disease will essentially step you back to a time before your native valve started giving problems, and will give you another cycle of "tending towards failure" with an eventual reoperation (unless you die of something else first). Mechanical valve disease will see you need to manage a drug, something which will occur (managing drugs) to you as you age anyway. It may also see you fighting a medical establishment which proports to support you, but only in a parasitic manner.

At 58 its easy to make a solid case either way. So I can't speak for your priorities as by 58 I'll have had my mech valve for 10 years already.

I wonder also whether it makes any sense at all to consider what technical or other advancements might come down the pipe in the future.

I suggest that less valvular advancements than you may like to imagine, because while we all look at the possible things on the horizon there is the reality of testing and approval regimes.

Managing ACT on the other hand has gone leaps and bounds (although the USA seems to have done a grand job of keeping that expensive when it should be peanuts and tying you down when it should be a liberating thing). Myself I moved between Australia and Finland a few times (for a few years at a time as well as some other European travel) with totally no more overhead than taking one small piece of luggage with me (the tester).

To me a key point is this: do you want to have a hand in how well your valve goes or just rely on the doctors for everything? With a mech valve I stand a chance of managing it to never have a problem.

Best Wishes.

 

[pellicle]

How much of an issue is diet (and alcohol) with managing a mechanical valve?

nil, unless you want to blow it up into an issue that doesn't exist, fluff around with lots of documentation on what you ate and still make no difference.

I'm helping a 25 year old lad who likes a drink and due to other medical issues we cope with managing drugs too.

Some reading from my blog:
http://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
http://cjeastwd.blogspot.com/2017/01/2016-inr-data.html
http://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
99% of the time its just business as usual.

 

[Protimenow]

I'm sure that the question was not just for me. As LondonAndy said, you dose the diet. One of the key things that the experts suggest is consistency - if you can, stay as consistent as possible with diet, activities, etc. This way, your INR should be affected the least.

As Andy said, this doesn't always work, and it's often hard to maintain that consistency. That's where a monitor can come into play - get a monitor and test your blood weekly. You shouldn't have to do it on a day when your diet or activities were very inconsistent - your regular dose should even you out, if you've only been inconsistent for a few days. It takes a while - more than a week - with an INR below 2.0, for a clot to form. Warfarin's half life is three days - so it takes a while to see the full effects of any dose.

Illness, new medications or supplements, and especially antibiotics, can also have an impact on your INR. As long as any dosing changes are small, you should be able to manage your INR.

As far as activites go - others hee have been very active - and I won't list all he activiies (because I can't remember them all). These activities include cross-country skiiing, walking, running (even marathons and half-marathons), cycle racing (I think), motorsports, lots of other evidence of extremely active lifestyles. You'll want to avoid activities that increase your risk of head injuries (things like tackle football, for example) because you want to avoid any possible brain bleeds, and you probably want to avoid activities that could leave a lot of bruising (primarily because they hurt, and secondarily because you can do a lot of other things that don't leave a bruise). Some doctors have said that weight lifting and other activities that make you put undue stress on your system should also be avoided. For he most part, though, you should be able to most or all of the activities that you're doing now -- only with more energy than you probably have now.

Pellicle can probably shae some of his videos. Others may want to share some of their athletic accomplishments - or at least list their current activities.

 

[dutchboy]

Welcome, lots of great information here. Do your homework, be objective, and ask questions.

 

[Protimenow]

For some reason, Pellicle's reply came befoe mine. Perhaps we were responding simultaneously.

Pellicle is a great source of information about INR management.

Also - if it hasn't been mentioned yet, if you choose to go with a prosthetic valve, you should get yourself a meter - even if you're stuck going to a clinic after the surgery, you'll be able to self-test weekly. (Some years ago, after I had gotten my metes and was testing multiple meters against each other and the labs), I kept my INR within range. When I went to the clinic for a test, I was always in range. They called me 'Mr Consistent.' Of course I was - I managed my own dosing and checked my INR before going to the clinic.

 

[pellicle]

For some reason, Pellicle's reply came befoe mine. Perhaps we were responding simultaneously.

quite probably ...