2nd Mitral Valve Replacement Next Week

[Guest]

Hi all. Just found this forum & have immensely enjoyed the read. Excellent info.! Here's this newbie's story (I apologize in advance for questions you've undoubtedly answered repeatedly):

In Oct. 2015 I had a mitral valve replacement via minimally invasive procedure in Phoenix, AZ. Minimally invasive, maximum pain! Epic tissue valve (I think Porcine?). Model #: E100-31M-00. Was told it would last about 10 years, or, worst case scenario, 5 years. Well, one year later I started having shortness of breath again, just as before. Echo revealed "significant stenosis"of tissue valve.

TEE revealed a "shadow" under the replaced tissue-mitral valve that no one knows what it is. Have spoken w. 1 cardiologist & me case has been presented to 3 very experienced cardio-thoracic surgeons. Cardiologist said he thinks it's a sub-valvular membrane (have no clue what that means). Still, no one has ever seen a case like this (go figure).

Summation: Having my 2nd OHS next Thursday (April 6th) w.in a 1.5 yrs. - this time full sternotomy (which mortifies me after reading about the procedure & subsequent wire problems). Surgeon said he would not do the operation if I chose another tissue valve since - even under excellent circumstances - I would very likely need a 3rd surgery (I'm a 49 yr. old male). My surgeon, who is approx. 60 yrs. old & very experienced (a man), said that a 3rd OHS would be dangerous & he really thinks my best chances to avoid a 3rd surgery is a mechanical valve. Although, he said we cannot guarantee that whatever has caused this will not cause it again since they cannot identify the culprit.

Have read on here about the Coumadin regulation. Both scary & comforting at the same time. My question is, since I live in the US, I am wondering where to get a self-check unit for my INR? And, how on earth will I know how to dose it? I know nothing about it & despise the idea of going on this med. I am very active in exercise & fear that my quality of life is over. I also pastor a church & worry that I will be forced to resign due to the poorer quality of health...not to mention how many stories of strokes I've read for folks on Coumadin.

Worse, I also have to have dental crowns put in soon. The surgeon suggested that I wait until at least 6 weeks after surgery to have dental work done & that I would have to wean off of Coumadin for a while before the dental work (taking a shot of something [starts w. an L?]). Then work my way back into my dosage. The INR thing is worrisome to me since they tell me it can be tricky to find an individual's particular ratio & can fluctuate significantly post-op. for quite some time (?).

I am a thin guy (about 5'9" 160 lbs.) so I also worry about the wires hurting afterwards & stopping me from working out or preaching after the sternum heals (about 3 months later).

Finally (my apologies for long post), after much reading, I have also asked my surgeon to apply SternaLock to secure my sternum in addition to the wires & brackets. But, I fear that this can cause more pain (i.e., the screws)? I am very concerned that excessive coughing, sneezing & using the spirometer afterwards will cause disunion of the sternum.

Simply, I cannot believe this is happening again so soon :Face-Angry:! Nightmare.


Any advice would greatly appreciated. Meeting w. surgeon Wednesday afternoon before surgery the next morning.

This forum is a blessing to me & I greatly appreciate you allowing a newbie like myself on here. Tremendous info.!

Homeskillet

 

[Homeskillet]

Also, quick follow-up question (sorry): I have a puppy that equates me w. a chew toy. My arms apparently look like a T-bone steak in his eyes. Punctures the skin quite frequently. Arms stay bruised. I recall when I was on Plavix for 3 months after my initial surgery how easily I bruised...& Coumadin is worse!

My question is, would you guys suggest that I get rid of the puppy since stopping him from chewing on me is virtually impossible at this point. At best, I would bruise much easier & constantly be worried about him causing profuse bleeding.

My surgeon said minor scrapes & scratches are not the issue on Coumadin. It's the serious punctures that can get worrisome - although I'm not sure how "serious" the abrasions have to be to be of concern? Also, that is not what I have read elsewhere: http://forums.webmd.com/3/heart-disease-exchange/forum/1927/1

I have read about a product called Quickclot that is supposed to help w. bleeding from cuts for Coumadin patients. Ever heard of this? How reliable?

I have also read that stress can greatly alter a persons INR. Is this true in your experience? Thank you again!

 

[Warrick]

Also, quick follow-up question (sorry): I have a puppy that equates me w. a chew toy. My arms apparently look like a T-bone steak in his eyes. Punctures the skin quite frequently. Arms stay bruised. I recall when I was on Plavix for 3 months after my initial surgery how easily I bruised...& Coumadin is worse!

My question is, would you guys suggest that I get rid of the puppy since stopping him from chewing on me is virtually impossible at this point. At best, I would bruise much easier & constantly be worried about him causing profuse bleeding.

My surgeon said minor scrapes & scratches are not the issue on Coumadin. It's the serious punctures that can get worrisome - although I'm not sure how "serious" the abrasions have to be to be of concern? Also, that is not what I have read elsewhere: http://forums.webmd.com/3/heart-disease-exchange/forum/1927/1

I have read about a product called Quickclot that is supposed to help w. bleeding from cuts for Coumadin patients. Ever heard of this? How reliable?

I have also read that stress can greatly alter a persons INR. Is this true in your experience? Thank you again!

Hi, welcome, a few of my own experiences to hopefully put your mind at ease maybe a little

Sneezing afterwards is the pits but a pillow helps that and the anxiety you get when you feel one coming up soon passes

I had 2 fillings a few weeks back (first ones since op) I never had to adjust my warfarin dose at all , and even when I had my wires removed my INR never went below 2.0, I was advised I didn't need to stop warfarin but as I self manage I did adjust it myself to the lower end of my range, warfarin management is not hard at all once you get your head round it and theres plenty of help here


I would have thought at your age poorer quality of health is simply a worry that is unfounded, this op hasn't stopped me from doing anything I did prior and unless you have other problems it won't with you either. And i think you will find the majority of folks here will testify the same

My wires stuck up a bit and as I'm very active in my job caused irritation, but it was certainly no biggie to have them out

would certainly keep your puppy, the bleeding from what I've had so far is nothing like what I was kind of expecting, when I cut myself prior I bled and not much has changed, apply pressure and it stops, I do find sometimes cuts start bleeding again a few hours later but really it's not like I'm in any strife. We have a similar product here called Celox for the clotting

http://www.valvereplacement.org/forums/forum/anti-coagulation/869084-celox-clotting-agent
It is meant to just gel it on the surface and kind of "set" when it contacts blood thus sealing any bleeding, I think I'd have to be cut pretty bad to need it

Not sure about stress, I don't really think it's an issue, my jobs pretty stressful at times, homelife can be stressful, my INR generally fluctuates over several weeks but theres certainly never been any time I've put it down to stress

 

[dornole]

Sounds like you don't have much choice . . . that can be a good thing in a way . . . gonna have to take things as they come, not much to decide. I think others can help with your specific worries and questions about INR, etc. From what I've read here your chances of figuring it all out and going on with a rich and full life are good.

What was wrong with your mitral originally - stenosis? Did you have rheumatic heart disease?

1.5 years is what I'm afraid of and is why I will be going mechanical when I need a full replacement. I suspect my hearty immune system will just stenose the crap out of a tissue valve.

 

[dick0236]

Welcome Homeskillet. Whoa.....warfarin ain't that big of a deal. In a nutshell....take the pill as prescribed, test routinely and live a normal life. There are thousands of good post on this forum about warfarin and I suggest you do a search......you will find that, for most of us, warfarin is nothing more than another maintenance pill and it interferes little with our lives......and don't get rid of the puppy.

 

[Agian]

I'll swap you the puppy for my mother-in-law. I'll throw in a dozen bottles of Lambrusco.

 

[Homeskillet]

Hi, welcome, a few of my own experiences to hopefully put your mind at ease maybe a little

Sneezing afterwards is the pits but a pillow helps that and the anxiety you get when you feel one coming up soon passes

I had 2 fillings a few weeks back (first ones since op) I never had to adjust my warfarin dose at all , and even when I had my wires removed my INR never went below 2.0, I was advised I didn't need to stop warfarin but as I self manage I did adjust it myself to the lower end of my range, warfarin management is not hard at all once you get your head round it and theres plenty of help here


I would have thought at your age poorer quality of health is simply a worry that is unfounded, this op hasn't stopped me from doing anything I did prior and unless you have other problems it won't with you either. And i think you will find the majority of folks here will testify the same

My wires stuck up a bit and as I'm very active in my job caused irritation, but it was certainly no biggie to have them out

would certainly keep your puppy, the bleeding from what I've had so far is nothing like what I was kind of expecting, when I cut myself prior I bled and not much has changed, apply pressure and it stops, I do find sometimes cuts start bleeding again a few hours later but really it's not like I'm in any strife. We have a similar product here called Celox for the clotting

http://www.valvereplacement.org/forums/forum/anti-coagulation/869084-celox-clotting-agent
It is meant to just gel it on the surface and kind of "set" when it contacts blood thus sealing any bleeding, I think I'd have to be cut pretty bad to need it

Not sure about stress, I don't really think it's an issue, my jobs pretty stressful at times, homelife can be stressful, my INR generally fluctuates over several weeks but theres certainly never been any time I've put it down to stress

Thanks for the info.

The wires are a major concern. Like yourself, I am - and fully intend to remain - very active. Have been an avid weightlifter much of my life & I am concerned that my INR will fluctuate significantly upon resuming my workout (after recovery).

Also worried that the wires will hurt so bad that they will stop me from working out (?).

Probably sound pretty ignorant about it all right now, but that's because I am about this issue .

And yes, your experiences have indeed been a great help. Exactly why I came on this forum.

Thank you again.

 

[Homeskillet]

Sounds like you don't have much choice . . . that can be a good thing in a way . . . gonna have to take things as they come, not much to decide. I think others can help with your specific worries and questions about INR, etc. From what I've read here your chances of figuring it all out and going on with a rich and full life are good.

What was wrong with your mitral originally - stenosis? Did you have rheumatic heart disease?

1.5 years is what I'm afraid of and is why I will be going mechanical when I need a full replacement. I suspect my hearty immune system will just stenose the crap out of a tissue valve.

My original mitral was "floppy" & hence was causing severe regurgitation. No one knows what has caused either episode so far, which is not a good sign.

All the cardiologist & surgeon have told me so far is that in all of their combined experience they have never seen this & have no idea what is causing it. Thus, our concern is that the same thing will happen even w. the mechanical valve & I'll be right back in the surgeons office in another year or so.

Have also read horror stories about the sound of the valve literally driving people to virtual insanity (e.g., ringing in ears, etc.). Heard that anger/stress causes it to resound even louder?

Again, simply a nightmare.

Wondering if I can still eat cookies, sweets, etc. on Warfarin? Some things a man just can't do w.out !

Thank you much for the response.

 

[Homeskillet]

Welcome Homeskillet. Whoa.....warfarin ain't that big of a deal. In a nutshell....take the pill as prescribed, test routinely and live a normal life. There are thousands of good post on this forum about warfarin and I suggest you do a search......you will find that, for most of us, warfarin is nothing more than another maintenance pill and it interferes little with our lives......and don't get rid of the puppy.

Thank you much Dick. I have read many of your informative posts already.

Confusing part for me is that I see where many suggest self-checking INR weekly....although I have no idea where I would get a machine or strips here in the US - much less how to actually work it.

Have also read where more active folks check it bi-weekly, which is most likely what I would do (I'm quite proactive). My surgeon said that every 4-6 weeks is sufficient, but, that would make me wonder what was going on w. my INR in the between-time? 4-6 weeks sounds too long to me personally, but, again, I am speaking quite ignorantly on the topic.

 

[Homeskillet]

I'll swap you the puppy for my mother-in-law. I'll throw in a dozen bottles of Lambrusco.

Well, since my luck has not been too great w. mother-in-laws....think I'll keep the pup :Scared:!

 

[Agian]

Oh come on, she's up to date with vaccinations, microchipped and recently wormed. 2 dozen Lambrusco and my yo-yo collection.

 

[pellicle]

I'll swap you the puppy for my mother-in-law. I'll throw in a dozen bottles of Lambrusco.

Mother in law. .. Per week?

 

[pellicle]

Hi

Have also read horror stories about the sound of the valve literally driving people to virtual insanity (e.g., ringing in ears, etc.). Heard that anger/stress causes it to resound even louder?

Well to me it all comes down who runs the show: you or your anxieties? I don't like to get bossed around by my subconscious. I'm sure that both Warrick and Agian would agree that there was a period of adjustment and times of feeling bad about things. Depression post surgery is to be expected, so the trick is to not let that form you ongoing opinions during recovery. Aim to get better and you will

Cookies and food in general not a problem.

I'm just back from a week in Prague and I've been on warfarin for over 5 years, more to come I'm sure

Much is over blown and storm in a tea cup material. It's interesting to me that the overwhelming majority who go on about warfarin aren't on it and yet those who are on it overwhelmingly say it's not a problem. It's not a club we benefit from you joining or ignoring, but just saying it's not that bad. So the ignorant or the ones with actual experience? Make your own mind up about that.

I'd rather manage my INR than another surgery. I've had 3 surgeries already.

A blog post of mine to chew on:
http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

 

[pellicle]

Hi

thought I'd go back and address some points ... having read the first post now...

Summation: Having my 2nd OHS next Thursday (April 6th) w.in a 1.5 yrs. - this time full sternotomy (which mortifies

don't hang on it ... you'll be out to it ... and it remains the best way in current medicine. People recover well.

I've had 3 surgeries, but all spaced by about 20 years.

...Surgeon said he would not do the operation if I chose another tissue valve since - even under excellent circumstances - I would very likely need a 3rd surgery (I'm a 49 yr. old male). My surgeon, who is approx. 60 yrs. old & very experienced (a man), said that a 3rd OHS would be dangerous & he really thinks my best chances to avoid a 3rd surgery is a mechanical valve. Although, he said we cannot guarantee that whatever has caused this will not cause it again since they cannot identify the culprit.

I too faced a similar choice (first operation was a repair second was a homograft). My surgeon also point out to me that if I picked a tissue at my 3rd that there was little doubt I'd be coming back for a 4th in anywhere from 5 to 15 years (being younger and more active). He made it clear that surgeons would not be lining up to do my 4th because I also needed an aortic aneurysm graft making the next surgery VERY difficult.

I looked at my wife (and our plans for children) and did not want to be taking the option which would be a total certainty of putting my family through this again (and a significant chance of me being a wreck and a liability on my family).

My question is, since I live in the US, I am wondering where to get a self-check unit for my INR? And, how on earth will I know how to dose it?

I can't answer with certainty of handling the US system (cos I'm Australian) but I understand you can work it in ... just find a friendly / cooperative Dr and you'll be good to go. As to how to dose, well the blog post I put up in my previous answer will help that. Also, you'll be on a dose by the time you leave hospital. I expect also a clinic for a few months at least. After that its pretty much like steering a car ... any kid can do it.

Bumps in the road require a little more experience but many of the questions (read all of them) have been asked here before and can be found with searching. Also there are people like me who are happy to help and set you on your feet for self management.

Your puppy won't be a puppy forever and so that part will stop.

As Warrick has said, I don't notice bruising more than usual and another member here has had a deep cut on his had that severed a tendon and he was on warfarin. The Dr at the hospital noted to him his bleeding was normal for the wound and they discussed his warfarin management. Short story is that I got a positive feedback from him about the directions I'd set him on.

Best Wishes

 

[dick0236]

Confusing part for me is that I see where many suggest self-checking INR weekly....although I have no idea where I would get a machine or strips here in the US - much less how to actually work it.

Have also read where more active folks check it bi-weekly, which is most likely what I would do (I'm quite proactive). My surgeon said that every 4-6 weeks is sufficient, but, that would make me wonder what was going on w. my INR in the between-time? 4-6 weeks sounds too long to me personally, but, again, I am speaking quite ignorantly on the topic.

Here is a starting point for INR self-testing info if you have health insurance...... Coaguchek Patient Services 1-800-780-0675. If you do not have good insurance try ebay.

Four week testing was the standard for many years since we had to go into labs for testing. With self testing it is convenient to test weekly or bi-weekly. Personally I would not go more than monthly without testing. If you have good insurance it is "fail safe" to test weekly (or bi-weekly if you have a predicable life style and your INR is easily managed). I test weekly even tho I am in range about 95% of the time. It give me a warm fuzzy feeling (LOL).......plus I had a stroke way back when anti-coagulant management was not well understood by the patient.......or the docs.

 

[dornole]

Being mega active is definitely still possible. Check out the Active Lifestyles thread. Some of our members with names like TheGymGuy and PaleoWoman and I think SumoRunner all lift. There's another who lives in the wilderness chainsawing all day.

 

[lance]

Try checking the Anti-coagulation and home testing sites on this board. Anti-coagulants are not a villain. Warfarin has 50 fifty years of successful use. The recently introduced oral anti-coagulants are not suitable for replacement valves only for A-fib. I'm sorry the tissue valve needs replacing do soon.

 

[Homeskillet]

Hi

thought I'd go back and address some points ... having read the first post now...



don't hang on it ... you'll be out to it ... and it remains the best way in current medicine. People recover well.

I've had 3 surgeries, but all spaced by about 20 years.



I too faced a similar choice (first operation was a repair second was a homograft). My surgeon also point out to me that if I picked a tissue at my 3rd that there was little doubt I'd be coming back for a 4th in anywhere from 5 to 15 years (being younger and more active). He made it clear that surgeons would not be lining up to do my 4th because I also needed an aortic aneurysm graft making the next surgery VERY difficult.

I looked at my wife (and our plans for children) and did not want to be taking the option which would be a total certainty of putting my family through this again (and a significant chance of me being a wreck and a liability on my family).




I can't answer with certainty of handling the US system (cos I'm Australian) but I understand you can work it in ... just find a friendly / cooperative Dr and you'll be good to go. As to how to dose, well the blog post I put up in my previous answer will help that. Also, you'll be on a dose by the time you leave hospital. I expect also a clinic for a few months at least. After that its pretty much like steering a car ... any kid can do it.

Bumps in the road require a little more experience but many of the questions (read all of them) have been asked here before and can be found with searching. Also there are people like me who are happy to help and set you on your feet for self management.

Your puppy won't be a puppy forever and so that part will stop.

As Warrick has said, I don't notice bruising more than usual and another member here has had a deep cut on his had that severed a tendon and he was on warfarin. The Dr at the hospital noted to him his bleeding was normal for the wound and they discussed his warfarin management. Short story is that I got a positive feedback from him about the directions I'd set him on.

Best Wishes

Read this 3 times now. Thank you much. Very informative.

A major concern that we have is that no one knows what is causing this. Hence, the possibility of it returning in a matter of mere months.

Will be doing much reading on here - as well as likely asking some old questions that y'all are probably tired of hearing :confused2:.

 

[Homeskillet]

Here is a starting point for INR self-testing info if you have health insurance...... Coaguchek Patient Services 1-800-780-0675. If you do not have good insurance try ebay.

Four week testing was the standard for many years since we had to go into labs for testing. With self testing it is convenient to test weekly or bi-weekly. Personally I would not go more than monthly without testing. If you have good insurance it is "fail safe" to test weekly (or bi-weekly if you have a predicable life style and your INR is easily managed). I test weekly even tho I am in range about 95% of the time. It give me a warm fuzzy feeling (LOL).......plus I had a stroke way back when anti-coagulant management was not well understood by the patient.......or the docs.

No insurance, just VA, which is horrid. Trying to look into a CoaguChek XS, but think a Dr. has to order it for me. I cannot seem to purchase one on-line in the US.

Definitely want to shoot for weekly - or 2x/week - checks.

A stroke is precisely what concerns us until we figure out my INR. My question is, do I just risk a stroke until they get it figured out?

Thank you again.

 

[Homeskillet]

Being mega active is definitely still possible. Check out the Active Lifestyles thread. Some of our members with names like TheGymGuy and PaleoWoman and I think SumoRunner all lift. There's another who lives in the wilderness chainsawing all day.

Got it. Will do! Thank you much.