Second surgery vs. Coumadin

[Lotti]

Which valve

Which valve

Clark.
Hi. I sympathise completely. I have until Feb 6th to make my choice, and have yo yo'd back and forth many times.
I was adamant not to be "A Patient" and decided on a tissue, then asked more questions from many people in many walks of life. A good point was that each time surgery is done they have to go through scar tissue making it more complicated. And then at what point do you start to think about your next surgey... 8 years 10 years, and we both know how much FUN waiting is!!!! I am 37 and from a long lived family. How many times can we go through the stress of waiting for surgery again, let alone the actual surgry at an older age each time. One chap I spoke to told me that the probability of something actually going wrong with warfarin is about the same as being hit by a car crossing the road. Well, thats a risk I take at least six times a day and so far so good. I am still undecided and have another meeting with my surgeon on 25th to discuss it further.I have also heard of people who manage their warfarin and diet restrictions with no problem at all and others who have just had to cut out vitimin K completely. Also one chap said it made him cold. I believe the USA are more forward than england (or certainly my county) with regard to testing you INR. We have to actually have blood taken and then phone 24 hours later for results. That could be a pain! One lady gave me a good bit of advice.. (It could be called a cop out too though)..If you really can't decide tell your surgeon to make the best choice for what he finds once he's in there! I hope you come to a decision soon and remember that whatever you decide will be the right choice for you. After all the important thing is that you do what's right for you, not anyone else.
Wishing you all the very best and will chat after we're both on the other side of the mountain as they say on this wonderfull site.

Lotti

 

[RCB]

Please say it ain't so!

Please say it ain't so!

Lotti,
I don't think you meant to post this:

"others who have just had to cut out vitimin K completely."

I have seen a lot of post on a lot of forums, but I have never seen anyone say they had to completely cut out vit. K. If it is so, please post a link to it
so I explain why that idea is not only unwise, but impossible!

Then I will let Al Lodwick post it to his list of crazy things that people say about ACT.

 

[Ross]

There is no possible way to cut out vit k completely. It's even in the food s you eat! The other thing, INR results called to you the next day are worthless. You need the results as soon as the test is done!

 

[aussigal]

I was quoted by one of the head CT surgeons

"your (meaning me personally) risk in a second surgery is greater than the risk of warfarin/coumadin"



I have often read a second surgery is double OR more the risk % of the first and will do all i can to avoid more than 1 round of OHS.

 

[Gemma]

Lotti,
Check out Anticoagulation Europe (ACE) http://www.anticoagulationeurope.org/welcome.html for advice - they're based in the UK and when my boyfriend Jim was trying to convince his GP & anti-coag clinic he could home-test his INR they were very helpful. Unfortunately it turned out the hospital still wants him to get his blood sample sent to the hospital clinic (rather than just phoning his home-test result in) for testing due to NHS funding or lack of staff or whatever reason you believe, but at least his GP knows he tests his INR at home as well and is sensible enough to ask for help if he gets an out of range reading ever, or in fact adjust his dosage if he really needed to. The hospital calls him on the day of the test if a dosage adjustment needs to be made, or send his results to him in the post otherwise. Waiting 24 hours to get results is not the way it should work! If that's the case where you are, get some info from ACE about home-testing and discuss it with your GP before you make any decisions.

Obviously your body's reaction to warfarin is personal, and some people have more difficulty getting regulated than others, but Jim hasn't had any problems so far, and certainly hasn't cut out vitamin K! He likes nothing better as a side serving than salad and coleslaw!

 

[Karlynn]

As I've posted in the past - one of the things to understand is that we talk of the risk of repeat surgeries in terms of living or dying. And those are the statistics we see as well - what % make it through alive. Granted, that # is still on the larger side, thankfully. What we rarely discuss, and maybe because we don't have any concrete information, is what shape the heart is left in after repeat surgeries. Has it weakened? Did chronic arrhythmia result? Is the heart performing at a decreased capacity? Are physical capabilities decreased? And if the answer is yes to any of these question, then to what degree? These are certainly questions I would be concerned with if/when facing additional OHS.

 

[Mary]

As someone who knows they face a second valve replacement, my concern is not with whether I live or die while undergoing it. My biggest concern is the initial two weeks of recovery afterwards. It is a hard surgery to recuperate from.

I have a heart complication from my valve replacement. I have pericardial constriction. It resulted from the surgery; not from the type of valve that was implanted. It is possible I will have to undergo another heart surgery to correct it. However, if I am lucky, I will be able to wait until I have my tissue valve replaced, and then have both procedures done at one time. So in my case, my having a tissue valve is a very good thing. My second surgery will not involve the complicating factors of anticoagulation therapy.

Although my experience is rather unique, it is an actual experience. What happened to me can happen to a person who has a mechanical valve, a repair, the Ross procedure, or a tissue valve replacement. If we question the condition of the heart following a second surgery, then we would need to compare it with the condition of the heart following any replacement. We have all read posts from members with mechanical valves who have ongoing problems with remodeling, arrythmmias, ejection fractions, development of issues with nonreplaced valves.

I understand why members with mechanical valves do not like newbies repeating the nonsense they hear from many medical professionals about the danger of coumadin. However, I personally don't like my decision to have a second surgery questioned everytime these threads appear. Perhaps if members who are on coumadin explain the anticoagulation issues, and the members who have chosen nonmechanicals explain their decisions and the thought process underlying their decision, we would have less acrimony. I think we would ALL benefit as a result.

 

[Mary]

I was quoted by one of the head CT surgeons

"your risk in a second surgery is greater than the risk of warfarin/coumadin"
I have often read a second surgery is double OR more the risk % of the first and will do all i can to avoid more than 1 round of OHS.

Toni,
I question those figures. This is from a thread started by Al Lodwick in May, 2004. If you have a different source, please share it with us.
And by the way, I reread Al's thread and it had many interesting points of view. If you're not tired of the subject, you might want to take a look at it.
Risk of reoperation with tissue valve vs. warfarin

--------------------------------------------------------------------------------

This was just published in the journal Heart Surgery Forum
Background: Many patients are advised to have mechanical aortic valve replacement (AVR) because their expected longevity exceeds that of tissue prostheses. This strategy may avoid the risks of reoperation but exposes patients to the risks of long-term anticoagulation therapy. Which risk is greater? Methods: We reviewed the records of 1213 consecutive, unselected AVR patients, 60% of whom had concomitant procedures, who were treated from 1994 through 2002. Of these patients, 887 were first-time AVR patients, and 326 underwent reoperation. Of the reoperation patients, 134 had previously undergone AVR (redo). We constructed a risk model from these 1213 cases to assess the factors that predicted mortality and to examine the extent to which reoperation affected outcome. Results: Multiple logistic regression analysis indicated that factors of reoperation and redo operation did not predict mortality. In fact, the mortality rate was 4.1% for all first AVR operations and 3.1% for all reoperation AVR ( P =.891). Significant predicting factors (with odds ratios) were reoperative dialysis (6.03), preoperative shock (3.68), New York Heart Association class IV (2.20), female sex (1.76), age (1.61), and cardiopulmonary bypass time (1.26). Conclusions: In this series, the risk of reoperation AVR is comparable with the published risks of long-term warfarin sodium (Coumadin) administration after mechanical AVR. Any adult who requires AVR may be well advised to consider tissue prostheses.
__________________
Al Lodwick, R.Ph.
Certified Anticoagulation Care Provider

 

[Karlynn]

Mary, if you're referring to my comments on the shape of the heart after repeat surgeries, it was not directed in order to sway people to the mechanical side nor to criticise those who choose tissue. I think those of us with mechanical valves are very clear in stating that it does not guarantee you will not ever have to have another surgery. However, for most under the age of 65 receiving a tissue valve, a second surgery (if they are fortunate to live a long life), is guaranteed, no matter how long the longest tissue valve lasts. And my comments were directed at looking beyond the issue of life and death from repeat surgeries, but also considering the possible negative toll that the heart takes.

I think we have done many many discussions on the issues of Coumadin and their draw-backs. We discuss not only whether having a stroke because of a mechanical valve can cause death, but also discuss what damage a survived stroke may cause the brain and physical abilities. I do not think we have done mush discussion, if any, on what shape the heart is in after a second surgery or any additional surgeries and I am bringing this up only to emphasize that this must also be considered, not just the life or death issue. In reality, most having repeat surgeries will have to deal with the heart damage issue, because the stats are still on their side for survival of the surgery. But I doubt that any surgeon would argue that each additional surgery doesn't take it's toll on the heart. To what degree is the unknown. And while those that choose mechanical should weigh this as a factor, those considering tissue should absolutely weigh it as a factor.

Yes, we have people with mechanical valves who have had repeat surgeries. And many of their stories should be a lesson for not only mechanical valve recipients, but also tissue valve recipients. Ross, Geebee, Nancy's Joe and Joann have all had repeat surgeries. All have stated that they have been told they would not make it through another because of the damage already done to the heart. I don't believe that this is because of the mechanical valve issue, but the issue revolving around what toll is exacted on the heart with each additional surgery. This is valuable information for all of us. And, IMHO, it is not something discussed when the Coumadin vs. Repeat Surgeries issue is discussed.

Mechanical valves are improving, just as tissue valves are. The valve I had installed 14 years ago was a good one, but the ones today are even better, so I feel comfortable in saying that people who receive mechanical valves today, do have a pretty good shot at it being the only one they'll need.

I, personally, do not question your decision. I think too many people here take personally, remarks that are made only to inform and highlight. It is not only the new members that question the wisdom of choosing a life on Coumadin. I see it from seasoned members as well. Just as you stated, any time this discussion comes up, if I were to take it personally, I would feel that my decision was being questioned. However, I choose to assume that any comments or information disseminated here is done to educate and not attack. Maybe some are to attack - I just choose not to look at it that way. (Which then makes the attack a failure.)

 

[Georgia]

I didn't have the opportunity to make a decision as to type of valve. Having not found this site prior to surgery, I didn't even know there was such a thing! I thought I'd have a mitral repair; when the repair didn't work, the surgeon used a St. Jude. Period.

I'm OK with the mechanical - how can I not be? I feel good, recovered well, and warfarin isn't the bugaboo it's made out to be (although when I've had a bad blood draw I don't always feel that way!).

I don't know what decision I'd have made; altho given my paucity of veins I have a sneaking suspicion I'd have gone bovine. But it's water over the dam.

But I don't really think about this at all other than when reading posts where someone is torn about the choice. Just understand that you WILL make a choice and you won't be looking back and re-guessing your decision. It'll be the right choice and you'll go forward from there.

 

[Karlynn]

Georgia (said with a smooth Southern accent, cuz it sounds cool that way )

Are you still getting venous draws regularly? If so, home test, or make your doctor get a machine! My veins in my "good veins" arm have thanked me for 4 years now.

 

[Georgia]

Karlynn: Yeah, yeah yeah - I need to join the 21st century; but my doc just won't go with the program (wants monthly venous draws) and as long as he insists on that I'm not real interested in purchasing a home testing unit (my insurance turned it down after many appeals).

There's a coumadin clinic here that I'm going to try to get connected with; just haven't made connections, yet.

It's kind of a catch 22 - this doc is great about managing the coumadin (well, pretty great); he doesn't panic, doesn't hold, etc. But doesn't like home testing. After having a rotten pcp, I hate to make this quite an issue.

 

[geebee]

I do not agree that to state there is a danger from repeat surgeries is telling those who chose a tissue valve they were wrong. It is simply indicating that there is a danger in repeat surgeries and that is a fact irregardless of the valve type.

I am a prime example that having a mechanical valve is no guarantee for avoiding additional surgeries. I have had 3 OHS and have been told I would not survive a fourth. That doesn't mean I would not take a chance on another surgery if I needed it but I sure would put my house in order first.

I am also a prime example of someone who would have been on coumadin if I had chosen a tissue valve because of chronic a-fib. Again, doesn't mean everyone who chooses a tissue valve will end up on coumadin (I think the 10-year stats show about 25% for various reasons) but it happens. For us not to provide that information to people seeking answers would be omitting important information.

This is a website started to provide ALL the information necessary for someone to make an informed decision. I have NEVER berated someone for choosing tissue and never will. Had I had the opportunity to choose for myself 25 years ago, I might have made a different decision. I do not know and I don't have a time machine to go back and change things. I can only move forward and hope to help others.

 

[Mary]

Sometimes we neglect the difference between replacing the mitral and aortic valve.
Betty has a link http://www.ajmc.com/files/articlefil. . .usaada50 7.pdf to an article in the anticoagulation forum that suggests the possibility of afib after replacement ranges from a low of 1% for aortic valves to a high of 29% for mitral valve replacement.
Clark, since you need your aortic valve replaced, perhaps this will help in your decision making process.

 

[nia]

I, too, am someone facing a 2nd (and most likely 3rd one along the way) OHS because I got a bovine mitral valve at 21. Like Georgia, I had no choice. Due to brain hemorrhage prior to the surgery, I could not be put on anti-coagulation therapy afterwards so I had to go tissue. I have no qualms with the decision made. If I had the choice, I probably went tissue anyhow to give me a chance at having children, but I tend to not think about this choice since there is nothing to be done about it now.

However, as Karlynn and Mary posted, what I think about the re-dos are not just about whether or not I?ll survive it. One concern is (and I think someone already posted this before) whether or not I have a health insurance that lets me have the second surgery at a good hospital. I?m already having some difficulty at job interviews, especially to those interviewers who ask why I had to take a semester off of college or why I got interested in cardiology (I worked for a cardiology lab as a student after I came back to college following recuperation from the first surgery). I do have ?textbook answers? to go with these questions, but in the back of my mind, I always worry about my potential employers finding out about my having had an OHS (from one of my references, perhaps). No one will hire someone who is guaranteed to have another OHS in the next 10 years or less (mitral tissue valves don?t last as long as aortic ones, and I?m a young woman?worst combination to have for the mitral tissue). And no jobs, no insurance.

Also, my heart will be in decline several years prior to the re-do. So even if I can get a job now, hiding that I?ll need an OHS, will I get fired once I can no longer hide my condition? Sure that?s illegal, but it does happen, and it could be hard to prove that I was fired because of my condition.

Another concern is that, yes, I most likely will survive the second surgery, but will I have the same physical and mental functionality afterwards? I am considering trying for medical school, and aside from my iffy GPA, what is making me hesitant about it despite my strong desires, is the fact that I would need the re-do before I?ll be fully certified. If I come out from the second surgery with reduced physical and/or mental functions to the point where I cannot become a doctor, how am I going to pay off the huge education debt? It will place a big burden on my family, on top of the emotional and financial issues associated with the surgery itself. I think this scenario can apply to people who are on home loans, etc. also. And would a bank/school even let me take out a loan, knowing that I have a significantly higher risk than others of not being able to return it?

When I had my first OHS, I was told that my chance for functional recovery was about 15%. I recovered fully from the surgery and two strokes, so luckily I was in that 15%. However, that comment made me aware that it was also totally possible for someone to survive the surgery but not regain one?s original physical and mental abilities.

Though, one thing I can?t help but worry about long-time anticoagulation therapy is how much toll my liver/kidney will be taking for being exposed to the medication for such a long time. From what I read here, whatever risk there is with taking coumadin for a long time (not about bleeding or stroke) seems to be not so big (?) and it?s not like I have a choice to avoid it either, so I guess it?s not as much of an issue? I guess I?ll always have something to worry about regardless of which way I go. And I LOVE to worry?at this rate, my stomach will probably be the first to give out?

I?m sorry to have rambled on, and I?m sorry if this comment offended anyone. I am not trying to sway someone?s choice. But, as much as valve replacement surgeries are becoming somewhat of a routine, it is still one of the most invasive heart surgeries one can get. So I think it is important to remember that there are risks and issues, aside from the matter of survival, that cannot be ignored when discussing about the operation/re-operation.

 

[Mama2Rylan]

Hey There! I had my OHS at Mayo just this past August. First off, I have to say, that I love that place. Everyone is so nice and understanding, I really do think that I found the best place. So please take some comfort in that. Second, as far as coumadin goes, I was very scared to be on it. When I had my surgery, I wasn't sure what I wanted to do, but for my complicated situation, I was told that mechanical was my only option. I'm glad that I got my mechanical. I know that I am less likely to need another surgery, and I can "move-on" a little easier. The coumadin has not really changed my life for the most part. I just have to remember to take it every night. Lately, my levels have not been the best, so that just means that I need to go get tested more often. Not a big deal, and when I get my home testing kit (hopefully that will be soon ) I can just call-in.
I am very happy with my mechanical valve. I only had surgery a few months ago, but I feel great. I have so much more energy and I am so excited to start living a "normal" life. I really think when it comes to it, you need to ask yourself how comfortable you feel with surgery. No one likes having it, and if you get a tissue, you know you will need to have another operation. Since you are older, your tissue will last you longer, but not forever. It's just a personal choice that we each have to make.
Well, good luck with your decision, and if you have any questions or want to talk about mayo at all, just give me a holler

 

[RCB]

A plea!

A plea!

"Though, one thing I can’t help but worry about long-time anticoagulation therapy is how much toll my liver/kidney will be taking for being exposed to the medication for such a long time"

Again, who even suggested to you that there are risk to the liver/kidney associated with warfarin? I won't take a cheap shot at you for posting such misinformation by suggestion you are trying to "scare newbees", but please don't post things about warfarin unless you know them to be true! Please!

There are many us on this board who have been on warfarin longer that some of the
member have been alive, who have no liver or kidney problems that could have caused by warfarin.

If you want a drug the worry about, then worry about acetaminophen where
your chance for damage are well established.

 

[Lynlw]

Nia

Nia

I'm really sorry you are so worried about so much because of your tissue valve.Please don't. yes some people have a tough time w/ redos, but I literally know hundreds of kids that have had 3 or 4 heart surgeries with out ending up physically or mentally deminished. So I really wouldn't stop your dream of going to medical school or what ever it might be, because of something that MAY happen during your next heart surgery. and as for worrying about having good health insurance in 10 or years down the road when you need your next heart surgery, try to be happy you don't have to worry about health insurance paying for coumaden, blood work (or a machine and supplies) and more office visit copays you would need if on if you had a mechanical valve now.
As for a job, I really don't think a possible surgery 10 years or less from now really would keep someone from hiring a good canidate, even IF for some reason one of your references did mention you had a heart surgery.
As you are leading up to your next surgery, yes there will be a decline of function, but if it gets to the point where it is affecting the quality of your life, it would be time for the surgery, so please don't worry about it greatly affecting your job and causing you to lose it.
I know you have overcome so much to be at this point of your life, so please try to enjoy it and not worry about all the worse case senerios down the road. I know it's best to count on what's available now, but if possible when you are thinking about the future, instead of thinking of all the things that can possible go wrong, try to think of all the advances that have been made in replacing tissue valves, wether it be having it repaired by cath, so that you wouldn't have to have more surgeries, or a valve grown from your own cells so that THAT could probably be the last replacement you need.
I hope that I didn't offend anyone by trying to show NIA all the positives, since it makes me so sad that someone her age is so worried about the future what ifs,
Lyn www.caringbridge.org/nj/justinw

 

[Karlynn]

I hope that I didn't offend anyone by trying to show NIA all the positives, since it makes me so sad that someone her age is so worried about the future what ifs,
Lyn www.caringbridge.org/nj/justinw

We do walk a fine line of informing and encouraging here. We need the success stories as well as the cautionary tales. It's about informed choice.

NIA - I would also encourage you to live your life's dreams to the best of your ability. Your heart repairs have given you the opportunity that 50 years ago would not have been available to you. I don't think many, if any of us, sit around in a cushioned room waiting for the next doctor's visit.

 

[CCRN]

Jealous

Jealous

Thought I'd put my 2 cents into the pile........There is a chance and a very good one that you might not get to choose at all. I had the same diagnosis as you. I was all set for one of those nifty stentless porcine models but the rug was pullled out from under me four days before my surgery with the results of my cath. You see, I had a nice fat aneurysm in my chest. I believe it was the same size as Ross' when his ruptured. I was immediately informed by my surgeon I would be getting a mechanical valve with dacron conduit and no discussion. After the previous info, as I have said before, I quite frankly didn't care if he went to Home Depot and bought PVC tubing to replace it as long as he got the thing out of my chest. Yes, coumadin is a pain BUT open heart surgery is not a walk in the park. I could have gone either way, I guess, but I will tell you If I had to choose between the worst pain I had post op and the anxiety I had before the surgery I would choose the post op pain every time. It's going to be okay. Tell your surgeon your thoughts on the subject and let him/her do the rest. Hope this helps.