New but Lurking for Months!

[pellicle]

They called me 'Mr Consistent.' Of course I was - I managed my own dosing and checked my INR before going to the clinic.

I love it when I read stuff like this

 

[pellicle]

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

its interesting the different attitudes in the USA to having a drink I recently put this picture:

and was surprised at how many people told me it was wrong to drink and ride a scooter.

FFS - get a grip folks

you can't even see if its alcoholic or not!!

 

[caro]

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.

Hi! I had my valve replaced with an on-x a little over two months ago. I did not have any symptoms before my surgery either. It was important to me to feel the same or better once I recovered. So far, I feel great! My incision was a mini thoracotamy. Much less pain after surgery than a mini stern or full stern and there are not as many limitations during recovery. I call my cardiologist once a week to report my INR and the clinic at his hospital manages the dose. For the first month, I went into the clinic. I am now using a Roche meter at home. Since cardio rehab is closed because of the virus, I’ve been doing doctor approved at home workouts. Once the gyms open back up, I’ll do the same exercises I used to do. I lift dumbbells, rowing machine, run on treadmill, dance, etc. I’ve been walking over 3 miles a day over the last month because the weather is so nice. I had the opportunity to play tennis a couple weeks ago and it felt great! When I was in the hospital, the doctors and nurses told me that they want me to continue eating vitamin K foods and that the main thing is to be consistent. Just as I did before surgery, I eat some kind of green every day. I’ve only had one warfarin dosage increase since having surgery. I plan on traveling again asap once the world returns to normal (I guess that will be when there’s a vaccine). I plan on traveling with an INR meter for the next 50 plus years.

 

[user 15848]

I had the OnX AVR on Nov-2015 at 63, my Surgeon ask me to choose Tissue/OnX, and told me and i quote "The tissue valve needs no pill, and should last you till you are in your high 70s".... then i looked at him and thought " and what happens when i am 78 and this white thing brakes ?", back to here ?, nah... , and as per TAVI, sure, sounds very good, BUT reality is that is not 100% it can be performed, and i can only be done "once" i read, so.... When i had this dilemma i read on tis site that goes something like this "your life will never be the same afte surgery, you had a condition now you have a fix, and Warfarin is not John Wick the boogey man, because as you get older, you may end up taking warfarin for "other" reasons anyways, ... Just sharing my thoughts...., there is no right and wrong here, just our personal perspectives, Be Safe, Keep Mentaly busy !, read, study, play cards, chess

 

[tom in MO]

One thing not mentioned about warfarin is that you can not readily take NonSteroidal Antinflamatory drugs (NSAID). Not because they interact with warfarin, but because they can cause stomach bleeds, which are hard to treat if on warfarin. For me with arthritis this is a pita. I'm allowed to take a 2-month course of NSAIDs at the over-the-counter strength and dose. I've had one surgery since being on warfarin, and it took a little bit longer to recover since it takes longer for your wounds to clot, scab and heal. Not a big deal.

However, I am happy with my mechanical valve, which I chose since it has no risk of having to be replaced in the future. I've had my share of operations and was not about to take a path that assured a second heart surgery.

 

[Protimenow]

Yes, NSAIDs CAN cause stomach bleeds, but a more important reason why we're advised not to use them, or to have very limited use of them, is that they make the platelets 'less sticky.' The result is that it takes even longer to clot than it would on warfarin alone. The effects of NSAIDs on clotting time can't be detected by a meter, so it's a guessing game to figure how much effect the NSAIDs will have on clotting time.

FWIW - I'm on Plavix, with interferes even more with the platelets -- so var, I haven't had serious issues with it - and others here have long histories of usage with no major issues.

I was told by a doctor that, for short term aches and injuries, it's okay to take an NSAID (maybe a day or two), but it's not advised for chronic use and, as Tom pointed out, it CAN cause gastric bleeding.

 

[heartlikeawheel]

Wow! Thank you everyone for these great comments and recommendations!
It's funny, I had a meeting today with surgeon and cardiologist and they had different things to say about valves. The cardiologist said good things about the On-X and the dosages of blood thinners (and of course mentioned the lifetime durability) and the surgeon went for the Inspiris saying I would be a good candidate for ViV TAVR when that wore out (going so far as to mention I was going to have a large valve put in). I'd like to think they were both speaking from an objective point of view but I'm taking it all with a grain of salt and still doing my research and getting input from folks like you - the actual guinea pigs!
At any rate they've set me up for a May 26 surgery - we'll all be wearing masks and washing hands during the procedure (well I guess I won't).
Oh, it was mentioned that it is very likely my small aneurism won't need anything done - it's between 3.7 and 4 I believe. And the surgeon said he's not sure if the mitral valve prolapse will be addressed either - wants to wait until he gets in there to see. So it's possible the only thing done will be the valve. Would I be right in guessing that the less done, the less risk of complications?
Lastly - what are your impressions of that other valve replacement website by Pick? To me it almost reads like a giant advertisement.

 

[heartlikeawheel]

Sorry maybe not cool to bring up what is probably the only other site devoted to these issues. And I have to admit I haven't really drilled down to the threads or stories where it's likely much the same as here (lots of good and bad). It's the top end that seems super glossy and perky.

 

[Protimenow]

I don't think that anyone here would be bothered by you going to whatever source you can find to get as much information (opinion, experiences) that you need. You didn't mention your age, and this may make a difference.

The Inspiris is marketed as having a longer life than other tissue valves. I don't know if it's been proven yet, and it's very possible that, when/if that valve fails, you'll be able to have a TAVI procedure that should give you some more years. Who knows - by the time you have trouble with the Inspiris IF you have trouble ith it, there may be a better way to repair/replace that failing valve. I don't know if you'll have to take anti-rejection medications (I don't know - my valve is prosthetic, but others here with tissue valves can clarify that).

The mechanical will require a lifetime of warfarin -- but it's no big deal. It's not the nightmare that some people paint it to be. There are many here (including me) who self-test and self-manage our dosing. If you don't want to manage it yourself, there are clinics that'll do this - and that your surgeon or cardiologist may demand that you use.

In any case, your surgeon may make the decision about valves when you're open on the table. You can tell him/her your preference, but the decision will ultimately be made in the O.R.

Good luck in your search for an answer. I'm sure that we're all here to help you.

 

[pellicle]

Sorry maybe not cool to bring up what is probably the only other site devoted to these issues.

all good ... there are many sources, if the people there aren't friendly because you went to "another place" well then ... that's their problem

 

[pellicle]

Oh, it was mentioned that it is very likely my small aneurism won't need anything done - it's between 3.7 and 4 I believe.

from: Aortic Aneurysm | ANZSVS

When do aortic aneurysms require treatment?
In healthy people the aorta (the main blood vessel that becomes swollen) is usually about 2.0-2.5 cms (20-25mm) in diameter although this can vary with age and whether you are a man or a woman. We know from two large studies in the USA and UK (Lederle FA et al, 2002) that aneurysms less than 5.5 cms (55mm) across can be safely watched as long as they are monitored on a regular basis. For aneurysms less than 4.4 cms across or less, a yearly ultrasound scan is sufficient to monitor aneurysm growth. For aneurysms between 4.5 and 4.9 cms across, a scan every 6 months is advised. An aneurysm greater than 5.0 cms across requires scans every 3 months although there is some variation in recommendations.

When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention. This is because, at this size, the aneurysm has a greater risk of rupture. It then becomes as safe to have an operation to repair the aneurysm, as it is to leave the aneurysm alone. Surgery may also be considered if your aneurysm is rapidly expanding on regular scans or it starts to cause other complications (see above). Rapid expansion means more than 7mm in 6 months or 10mm in one year.

Whether you proceed with surgery will not just depend on the size of the aneurysm. It is important that each patient is fit enough to withstand the operation. Fitness for surgery can be affected by many factors and the decision whether or not to proceed with surgery can be a difficult one, as it is a very major operation. It will only be after a detailed discussion with your surgeon, regarding your own personal circumstances and type of treatment available, that a decision can be reached.

There is still some debate on the treatment of aneurysms between 4.0 and 5.5cms despite the large UK and North American trials indicating that there is no clear benefit. Looked at in another way though, there was no clear disadvantage to having the aneurysm treated at an earlier stage. Overall 60% of all patients in the trial would eventually require an operation so why not step in at an earlier stage? Taking patients with aneurysms over 5.0cms the argument is even more convincing, as over 80% of these patients eventually require surgery. However, the accepted size to initiate treatment is still 5.5cms (55mm).

 

[user 16827]

its interesting the different attitudes in the USA to having a drink I recently put this picture:

and was surprised at how many people told me it was wrong to drink and ride a scooter.

FFS - get a grip folks

you can't even see if its alcoholic or not!!

Yeah ! And what about your crash helmet Pell,

 

[pellicle]

Yeah ! And what about your crash helmet Pell,

on the ground beside my left foot mate ;-)
but when I visited Tassie I often saw people walking around in supermarkets still wearing them ... I hope they were cyclists ;-)

 

[jcgtok17]

This coming Friday, May 1st is the 3 year anniversary of my AVR operation (Infective Endocarditis, undiagnosed bicuspid aortic value). IF this valve were to need replacement before the 10 year anniversary I'd be heavily leaning towards a mechanical value replacement if TAVR procedure were not feasible for some reason. Both Japan (current abode) and Canada (nationality) now cover TAVR procedures under universal health care and the fact the existing St. Jude is 27mm bodes well unless there is other "work" required at the time. Great advice in this thread for certain.

 

[user 16827]

on the ground beside my left foot mate ;-)
but when I visited Tassie I often saw people walking around in supermarkets still wearing them ... I hope they were cyclists ;-)

Haha i never noticed it there i would make a poor Detective

 

[tom in MO]

Wow! Thank you everyone for these great comments and recommendations!
It's funny, I had a meeting today with surgeon and cardiologist and they had different things to say about valves. The cardiologist said good things about the On-X and the dosages of blood thinners (and of course mentioned the lifetime durability) and the surgeon went for the Inspiris saying I would be a good candidate for ViV TAVR when that wore out (going so far as to mention I was going to have a large valve put in). I'd like to think they were both speaking from an objective point of view but I'm taking it all with a grain of salt and still doing my research and getting input from folks like you - the actual guinea pigs!
At any rate they've set me up for a May 26 surgery - we'll all be wearing masks and washing hands during the procedure (well I guess I won't).
Oh, it was mentioned that it is very likely my small aneurism won't need anything done - it's between 3.7 and 4 I believe. And the surgeon said he's not sure if the mitral valve prolapse will be addressed either - wants to wait until he gets in there to see. So it's possible the only thing done will be the valve. Would I be right in guessing that the less done, the less risk of complications?
Lastly - what are your impressions of that other valve replacement website by Pick? To me it almost reads like a giant advertisement.

Would I be right in guessing that the less done, the less risk of complications? I'd say yes and no. The biggest complication is Open Heart Surgery, thus they like to fix what's needed while they are in there. Make sure you know what paths will be taken when "he gets in there to see." You may need to make a decision before hand or have a family member make that decision for you since you will be under the some of most powerful anesthesia there is.

Many surgeons are warfarin adverse because they do not prescribe or follow the drug. That's done by cardiologists. Cardiologists have people on warfarin or other anticoagulants for a variety of ills, thus anticoagulation therapy is their business.

 

[tom in MO]

Yes, NSAIDs CAN cause stomach bleeds, but a more important reason why we're advised not to use them, or to have very limited use of them, is that they make the platelets 'less sticky.' The result is that it takes even longer to clot than it would on warfarin alone. The effects of NSAIDs on clotting time can't be detected by a meter, so it's a guessing game to figure how much effect the NSAIDs will have on clotting time....

Per my two cardiologists, in aortic valve replacement patients, the primary reason to avoid warfarin or limit its use when on NSAIDs is stomach bleeds. That's why I am allowed to take up to two months of an over the counter recommended dosage.

 

[Protimenow]

Well, golly gee, if your two cardiologists say this, it must be so. Are these the same experts who are comfortable with testing every two weeks, and are comfortable with INRs below 2?

I'd sure consider these two cardiologists to have much better knowledge than any of the other poor suckers who went through medical school, got Specialty Certifications for Cardology, and actually probably keep up with the literature. I sould move to MO so I can see YOUR cardiologists. I must be wasting my time here.

 

[tom in MO]

It has nothing to do with being in Missouri, the Show Me State. I was actually born and raised in Delaware, the First State. I was educated in Vermont, the Green Mountain State. I wouldn't presume anything about you being from California.

When it comes to my knowledge base, well one of my cardiologists was very old and recently retired...he had the benefit of experience and years of knowledge. The other cardiologist is younger, but not too young, so he has the benefit of up-to-date training and a youthful mind. Then I have my own test bed, my body. Taking NSAIDs as needed, no more than the OTC dose for no more than 2 straight months has worked for me.

By the way, my in-range INR goal is not <2 but 2-2.5.

 

[Pete81]

Hi heartlikeawheel, My St Jude25mm mechanical valve was put in somewhat 3 yrs ago in the UK and was on warfarin back then with in clinic testing and dosing came by, yes, Royal Mail. Worked back then because I was very cautious and consistent with my diet. Since I moved to the Netherlands where I take Fenprocoumon a longer-acting warfarin derivative which I self dose after self testing with my CoaguCheck machine. I have never really been out of range since and (knock on wood) haven’t had any problems with bleeds or other anticoagulant related adverse events. At the same time, because I have the ability to self test and dose I am much more relaxed with my sports and activities and have found that for someone my age at least, it’s fine to have a few more than one when celebrating. I take omaprazol as a stomach protector when there’s a need for the anti-inflammatory effect on top of pain relief, then there’s naproxen to which is supposedly milder than ibuprofen on the stomach. Overall, despite the anti-coagulation, really quite happy with my mechanical valve but have to say at 35 a tissue really wasn’t an option.