Valve Selection Questions

[kcamarata]

I am 44 years old and just scheduled my aortic valve replacement for the 29th of this month. I am active. I run, hike, fish, hunt, and tackle the occasional construction project. I am an Architect, so my days are often spent in an office environment. I also have three daughters ages 5, 11 and 16 (I mention it because they keep me busy too). I was leaning tissue because I don't like having to be on blood thinners for the rest of my life. Unfortunately, that also means that I would be electing to have more surgeries down the road. I just read through another thread that seemed overwhelmingly mechanical biased and started wondering what peoples experiences were on blood thinners. What can you do? What can't you do? For example, I like to drink the occasional beer with my colleagues and was considering making my first batch of elderberry wine this fall. What about your general diet? How do you manage / balance your food to make sure that you don't throw things out of wack? Any insight would be greatly appreciated. Thank you!

 

[clay_from_nj]

There are a lot of strong opinions here on both sides, mechanical and tissue, but most would agree that both are very good and whichever you choose is the best for you. IMHO, most often that choice is based on a negative; that is, basing it on what you really don't want or can't do. For instance, I was going into congestive heart failure before my AVR and absolutely did not want to go anywhere near there again, such as when a tissue valve is wearing out and needing replacement. Some people really don't want to or can't take warfarin (so choose tissue), or don't want to go through another OHS or gamble on TAVI being a future option (and go mechanical), or don't want to deal with the ticking sound of a mechanical valve (so tissue), or can't go through OHS (TAVI for them).

My personal experience with warfarin: I lift weights at the gym every weekday, ride my motorcycle way too fast, split wood, mow my acre with a regular walk-behind, occasionally run, bike a lot, etc. I've drunk anywhere from nothing for a couple of months to several drinks at one sitting. I do like to use fresh spinach with a lot of meals and when I was out for a week my INR went up to 3.1 (target range of 2-3). Still nothing to worry about.

 

[dick0236]

.........I just read through another thread that seemed overwhelmingly mechanical biased and started wondering what peoples experiences were on blood thinners. What can you do? What can't you do? For example, I like to drink the occasional beer with my colleagues and was considering making my first batch of elderberry wine this fall. What about your general diet? How do you manage / balance your food to make sure that you don't throw things out of wack? Any insight would be greatly appreciated. Thank you!

It is not a bias....more like bewilderment that so many pre-surgery patients make anti-mechanical valve decisions based on warfarin misinformation. I have been on warfarin longer than most and have seen a lot of ill informed posts regarding ACT(anti coagulant therapy) since joining this group.

Like you, I raised two active sons, fished, camped, built a lake cabin and other construction projects etc.....and I still play golf and workout at a gym several times per week. I smoked, drank and generally pushed the envelope for twenty years after surgery until I wised up. The only problem I've had with ACT was due to my own negligence in following a simple rule...."take warfarin as prescribed".......it is a drug that can kick your A-- if you "play fast and loose" with it.

The PLUS side is that I have needed only one OHS.....some don't have a problem with looking at several potential surgeries down the road.....but for me, one was enough. Maybe someday they will perfect an "outpatient valve replacement" procedure....who knows, I've been hearing it for years....and years.

I never had to choose a valve type, but the successful surgery back in 1967 doubled my life expectancy so far. You have several choices today and none of them are wrong.....you just need to review the pros and cons of each and make the decision you want to live with.

 

[kcamarata]

Well....the two of you are certainly easing my mind a bit on warfarin. dick0236, your comment about taking warfarin as prescribed was also one of my concerns. Although I have been generally consistent with my blood pressure and cholesterol meds, I do occasionally miss a day when my schedule is thrown out of whack. My understanding is that I would have to be a lot more vigilant.

 

[dick0236]

........have been generally consistent with my blood pressure and cholesterol meds, I do occasionally miss a day when my schedule is thrown out of whack. My understanding is that I would have to be a lot more vigilant.

Everyone misses a dose of warfarin every now and then and the world does not come to an end although it might affect your INR for a short time. I had the same problem, especially during the earlier years when warfarin was my only med. A seven day pillbox mostly solved that problem.....also helps assure not double dosing. It becomes just another routine after awhile.

 

[pellicle]

Hi

I do occasionally miss a day when my schedule is thrown out of whack...

Yes, me too, and its not a big issue. I did daily measurements with my Coagucheck XS and have confirmed that my body INR behaviour is consistent with a small model I developed. It goes like in these lines (the bars are the dose)

in the above two scenarios are modeled: do nothing about it OR take half of the missed dose to accommodate. As you see little difference was made.

You may find this post interesting reading, it is about what happened to me when I had to go off warfarin for a surgery (and took the opportunity to document what happened to my INR and no I was not on Heparin during that time either my surgeon didn't think it was needed for such a time with an ATS valve).

Ultimately its like playing tennis, keep in the middle of the court, so if your INR was to be impacted by something it can go a little ways either side before returning to desired. As the modern valves are documented at being far less likely to cause clots even INR = 1.5 is not seen as a long term problem and with the On-X brand we actually have a study which suggests that even totally uncoagulated can be event free for even years.

So its really not a big issue if you ask me (and I'm on warfarin and have an ATS)

Best Wishes

 

[pellicle]

Hi

It is not a bias....more like bewilderment that so many pre-surgery patients make anti-mechanical valve decisions based on warfarin misinformation.

the whole thing reminds me of what I see as consumerism tendencies. Where everyone wants to "exersize their rights as a consumer" ... but we're not buying a fridge here.

People want to be informed, but how much do people actually understand the "informing" and can they differentiate it from the "advertising".

 

[pellicle]

Hi

I thought I'd also answer you question (sorry about the number of bite sized posts by me here)

I am 44 years old and just scheduled my aortic valve replacement for the 29th of this month. I am active. I run, hike, fish, hunt, and tackle the occasional construction project.

ok, sounds like me. Eg http://cjeastwd.blogspot.com/2011/07/solar-floor-heating-part-2.html
http://cjeastwd.blogspot.com/2011/05/palm-sunday.html

Timberrrrrr (and it landed perfectly where I'd planned it to go).

I just read through another thread that seemed overwhelmingly mechanical biased and started wondering what peoples experiences were on blood thinners.

well be careful of threads here that seem overwhelmingly biased. There is a case to be made for tissue valve and in my opinion that case depends on other co-morbidities (other illnesses and weaknesses) ... but in my view if you are an otherwise fit and healthy male in late middle age (no other issues like diabetes) a mechanical is the most sound option.

What can you do?

everything (seriously everything) I did before. Bang my finger with a hammer still huts (I have not done before and after pain comparisons) bleeding seems about consistent with my age (http://www.valvereplacement.org/forums/showthread.php?43022-I-cut-myself-today-thread)

What can't you do? For example, I like to drink the occasional beer with my colleagues and was considering making my first batch of elderberry wine this fall. What about your general diet? How do you manage / balance your food to make sure that you don't throw things out of wack? Any insight would be greatly appreciated.

My experience is that I drink as much as I want (I'm not a falling down drinker) and it has no effect on my INR. The diet thing makes no difference to me (sure my INR makes occasional variences, but remains statistically well within range) Below is my 2013 data for my INR, note that the variations (and corrections) earlier in the year were as a result of a surgery.

yet I remained within a Std deviation of no more than 0.3 INR from my target mean of 2.5 ... overall a very good result and putting me square in the middle of the minimal problems group.

So basically its like that Kubrik movie: How I learned to stop worrying and love the bomb (where warfarin is the bomb)

anyway ... who knows, you may end up on it anyway down the track :-0

Best Wishes

 

[Eva]

I'll share with you my very honest personal opinion after six years on Warfarin. Though I never had any *major* issues with Warfarin, I wish I didn't have to deal with it...it would have been one less stress on me since I'm going through many these days! Also, it would have been one less pill to take and to worry what may affect its efficacy or so.

This is just my OWN personal feelings these months! Ask your surgeon if he thinks he would be practicing valve replacement percutanously! You may read more about this procedure if you like at: (http://my.clevelandclinic.org/heart/percutaneous/percutaneousvalve.aspx)

This was my most difficult decision I had to make in my life!

Good luck. Prayers.

 

[ski girl]

I'm one of the 'fortunate' people who has had one of each type of valve - rubbish one I was born with, tissue for 11 months, now mechanical for almost three years.

Warfarin really has been a non-issue and I do whatever I want, including mountain biking very badly. I drink what/when I want (like pellicle, I don't get falling down drunk, I drink the same as before), and I eat what I want with the exception of grapefruit juice that once sent my INR to 9.0. But that's a known interaction, except it wasn't to me.

I'm happy with my valve choice now, other than sometimes the ticking noise drives me bonkers! But less bonkers than another operation would. As others have said, both choices are very VERY good choices and soooo much better than keeping your current valve - so once you make up your mind, be at peace with it! Best of luck from down under.

 

[Heart Of The Sunrise]

I started thinking tissue due to Coumadin misinformation. For a wealth of reasons a mechanical valve was the right choice.
I take brand specific Coumadin...this has not been an issue. I rarely hear the "ticking" anymore.
My mother is 90 years old. Longevity in the family. So, the fear of re-ops at increasing older ages was a bigger fear than Coumadin.
Soon I will be home testing for my INR.

 

[MrsBray]

42/f/AVR 3/5/14, mechanical

I chose mechanical for two reasons:
1) I wanted to drastically decrease my chances of facing surgery again (even though it wasn't as horrible as I thought it would be - the more surgeries you have the more risk you assume). My surgeon told me if I opted for tissue, I would be seeing him again in possibly 5-7 years because tissue valves wear out faster on us young folks than they do on our more mature friends.
2) I've already lived through years of a declining valve, why would I want to do that again?

I am just now getting my INR stabilized. I have not had any problems, have not adjusted my diet, etc. I did have a little spike when I went on vacation because my normal intake of greens decreased, and my intake of alcohol increased. But that was just a blip. Pre-op I was on only night-time meds, and kept them on my nightstand. Post-op, initially, I was on morning & night, so i set an alarm on my phone. There were definitely days when I forgot to take my morning meds, but I never missed them by more than a few hours. I still keep an empty pill bottle on my nightstand to remind me in case I ignored the alarm on my phone.

The only adverse warfarin effects I have noticed are: 1) It take a little longer to stop bleeding when the chickens scratch my arm (maybe a few minutes more?) 2) If I have an acne breakout and manage to pick at it, they take 2-3 days longer to heal completely. 3) Girl problems.

It's probably if I weren't on ACT that I would never had paid attention to those issues.

Ticking? Yeah, it's there. Sometimes I hear it, other times not. Sometimes others hear it, sometimes not. Right now: 8:15 am, alone in the house, AC running, ceiling fan on, can't hear it.

I agonized over the decision also, because of the possibility of hearing ticking forEVER. Once I hear something, it's hard to ignore it, and then I start counting (I know!). I've gotten over that, mostly. It's a personal decision, and I did have a lot of my older friends question my choice (which I thought was rude) because of the warfarin. I'm happy with my choice, and I'm sure if I had chosen tissue I would be happy with that choice as well.

Good luck!

 

[kcamarata]

Thank you all for taking the time to respond to my questions. One of the things that has jumped out at me as I read the responses and information in other places is the testing related to being on warfarin. People mention home testing, so there must be some "freedom" gained by being able to do that? What does the testing involve? How regularly do you get tested? The fact that I am seeing people chart their results seems rather intimidating too. Is that a normal part of managing life on warfarin?

 

[Ely]

hi kcamarata. I have had a mechanical aortic valve for 7 years now, and been taking warfarin ever since.

For 6 years I used to get my INR checked in a laboratory (i.e blood sample taken from my arm with a needle), but not anymore. My parents bought me a CoaguChek machine (bit expensive unfortunatly, something like 1,000 €). Basically, all I need to do is to sting my finger, put a drop of blood on a testing "band" (not sure if this is the right word), and the machine tells me my INR in a matter of seconds. I self-adjust my dosage now, and my INR is always fine. About the frequency, I used to get checked at the laboratory once a month, now with the easiness of the machine I do it twice a month.

About what I can do : to be honest, I've lived my life without any restraint. Alcohol intake ? I got drunk several times. Food diet ? I eat what I want. I just did not do any dangerous sport or activity, but I'm not fond of them anyway. I'm still young (23yo) so maybe that helps, but warfarin really hasn't been a blocker for me. My INR can go up to 5 when I get very drunk, so I try not to do that anymore.

Hope that helps. All my best.

Edit : I forgot to talk about the one thing that sucks with warfarin. When you need to get surgery, you'll need to stop taking warfarin days before so that you're not on blood thinners the day of the surgery. But at the same time, you still need to be anticoagulated before and after, so you'll bridge it with heparin stings in the stomach. These are not fun times.

 

[pellicle]

Hi

One of the things that has jumped out at me as I read the responses and information in other places is the testing related to being on warfarin. People mention home testing, so there must be some "freedom" gained by being able to do that?

absolutely. The freedom is not having to take time out of my day (causing me to be late for work to go to a lab and have tests done. Just testing if I feel that I'd like to know, or testing again a few days later if I feel my INR was trending in a direction I don't like (and mostly finding its recovered without my intervention. It gives me a sence of comfort or confidence.

What does the testing involve?

Basically here it is:
[ link ]

How regularly do you get tested?

I don't get tested very often now, because I test myself. I got tested last month (to compare) and that was about a year since the previous test.

I test myself every week (Saturday is my day)

The fact that I am seeing people chart their results seems rather intimidating too. Is that a normal part of managing life on warfarin?

I can't say its part of "normal", I think some of the folks here just maintained momentum from their time in a clinic and had a "feel" for what they needed. But I like to know what my history is ... if you don't then you don't need to record it. However it will make it *very* difficult for your to make your own dose adjustments if you have no idea what or when or how much. If you want to take over dosing (and I did) then you need to be rigorous.

Hope that helps

 

[pellicle]

Hi

My parents bought me a CoaguChek machine (bit expensive unfortunatly, something like 1,000 €).

should it matter to you, they can be had for half that online at any of the good European, American or Australian online medical supplies shops and for even less than that on eBay used. My machine is used (I've been using it for some years now) and that does not bother me at all. The actually sensitive stuff is in the strips which are disposed of after every test (you need to keep buying them) so a used machine either works or does not work ...

Many buy these machines and then either can't test (or mum/dad won't use it) and so get rid of it on eBay.

HTH

 

[chaconne]

kcamarata,

I have things in common with you: 44 years old, active but have desk job, 3 kids (4, 7, 9). I've found that being on Warfarin is not a big deal and is worth tolerating rather than having a repeated surgeries. I do bruise more easily and occasionally get some big purple bumps if I bump something really hard, but I don't bleed anymore than usual when I get cut and I've had big gashes that needed stitches. I think there are good reasons to get tissue valves, like wanting to bear children, not being able to tolerate the clicking of a mechanical valve, a known intolerance to Warfarin, boxing, playing full contact American football. However, l agree with others here that you can do well with a mechanical valve with a little extra vigilance and care. Otherwise you should be able to do whatever you want and eat whatever you want without much worry.

 

[T in YVR]

Like many others I had the same questions as you and started this thread at the time: http://www.valvereplacement.org/for...act-to-your-life-from-being-on-blood-thinners

There were alot of good responses in here. Its worth a read.

Home testing has really made it easier and provides alot more peace of mind with a very fast INR reading when you need it. As for charting the results, its pretty easy and definitely not intimidating. I just set up an Excel spreadsheet, enter my daily dose in the table along with my periodic INR readings and plot it on a graph. Once you set it up, its just a matter of entering a # each day. Piece of cake. If you want to have someone spare you the hassle of setting it up, send me a message and I can email you my Excel file/template and you can use that for capturing your data. Its very useful to have all of your historical info on dosage and INR. I also capture any notes on changes in diet, my meds etc so I can see any trends or changes.

By the way, just as a point of reference I bought my brand new Coaguchek XS in Canada for $500 CDN (about 350 Euros or $450 USD)....the real cost for home INR testing is not the machine though - its the ongoing strip cost which can be about $5-$6 per strip/test if you buy them on eBay. But its worth the money in my opinion.

Tony

 

[tom in MO]

"The fact that I am seeing people chart their results seems rather intimidating too. Is that a normal part of managing life on warfarin?"

No it's not normal. Outside of a few on this board, all the warfarin takers of my family and friends either just went to the clinic and did not even write it down the value, or recorded it in the little book you get with the monitor. Most people do write down their dose so they won't forget it. I am a "scientist" and the only thing I chart is my weight once a week because I need to be reminded not to eat too much and that's the best way.

Alcohol has no direct interaction with warfarin. If you get really falling down drunk, you will bleed more, that's the risk. If you puke, you will upset your metabolism for a days, but everything will come back to normal on its own.

You can test on your own, or through a walk-in testing clinic. What you do is dependent upon your insurance, how close you are to a phlebotomist, and what you can afford. Most US insurance policies cover testing through a walk- testing clinic for a very small fee or no fee.

 

[river-wear]

I've been told by a couple of medical professionals (I think it was a surgeon and nurse) that home testing reduces the risk of bleeding complications by about 50%. Part of that is probably due to people taking more responsibility for their care.