Trying to learn "my place" in all of this

[Ambriz]

Thanks for the replies. My mother had to take coumadin therapy recently after a bout with pnemonia and she told me as well that it was not that big of a deal. So I'm probably just getting worried for nothing.

 

[Ambriz]

maybe you mentioned this somewhere, but do you know the cause of his valve problem?

I think they said he was born with the bicuspid valve and I assume the other things occurred because of that. (i need to find out more) He also has high cholesterol, so maybe that is making it worse.

 

[Ambriz]

A prison sentence of bags of medications... I've never heard concerns about taking coumadin put quite that way. Actually, given the kinds of misconcetions about the drug that are out there, your concerns are pretty normal.

Life tends to present all kinds of challenges. We tend to respond by doing whatever we need to do to get by. If getting by means I'll need to pack my bag of coumadin along with me, I'll do it.

-Philip

I'm sorry I hope I didn't offend. I'm still just trying to wrap my brain around all of this and that was just my initial reaction to him telling me that he would have to take some medication for the rest of his life.

 

[Nancy]

I would guess that the majority of adults take a medication of some kind for the rest of their lives. Really, Coumadin is not a scary monster. It just has to be regulated properly. Many folks on this site learn how to do their own testing and dosage adjustments. It's like someone who has to take insulin, but not even that bad, because you don't have to test as much.

 

[hook]

I am 45 years old, and got a mechanical valve. Wouldn't have it any other way. I would hate to think every time I work out I am cutting life of my valve. I agree with the person who said they don't want to do this again,,, I would not!!. With additional open heart surgery you keep increasing your risk for various arythmias. Once you get these you will be on ACT anyway. People older than 60, those who do things that make you bleed, or women who want to have children are all great reasons to get tissue; to tell the truth I almost did. For me, I am glad I went the direction I did.

BTW, the ACT is no big deal. I take my pills, check my INR at home. The best part is you will know when he lies to you; his heart rate will spead up the clicking will give him away.

 

[Ambriz]

With additional open heart surgery you keep increasing your risk for various arythmias.

OK this i didn't know. I really have a lot to research.

BTW, the ACT is no big deal. I take my pills, check my INR at home. The best part is you will know when he lies to you; his heart rate will spead up the clicking will give him away.

That made me laugh, thanks

 

[Marguerite53]

So I'm probably just getting worried for nothing.

You are not getting worried for nothing. You are getting worried for love. This we all understand! Fortunately you both have time to get answers to questions (even the ones you have not got enough knowledge to ask yet) so that you can walk into this surgery with confidence. This is a great place to ask questions. What we can do is help you formulate deeper kinds of questions to ask the cardio and surgeon and thus make your understanding more thorough. Keep in mind -- it will all seem dizzying, but you will manage to get your arms around things.

Marguerite

 

[Philip B]

Offended?

Offended?

Ambriz,

Your analogy about a prison sentence with bags of meds wasn't offensive. There are lots of varying opinions out there and even among members here about coumadin. Yes, there are some members here who suscribe to the opinion that it's a bad drug and should be avoided at all costs; those folks are entitled to their opinions. I simply don't share their opinions because My experience with the drug has been positive.

I've been in some pretty bad accidents since starting to take the drug in March 2007 and I'm still here. This said, do make sure to weigh all of the information and opinions you can find. Well-informed decisions require looking at lots of information.

Personally, I wouldn't be honest if I didn't admit that I had concerns about being on a drug for the rest of my life following AVR surgery. Those concerns were resolved pretty quickly.

-Philip

 

[Lynlw]

I am 45 years old, and got a mechanical valve. Wouldn't have it any other way. I would hate to think every time I work out I am cutting life of my valve. I agree with the person who said they don't want to do this again,,, I would not!!. With additional open heart surgery you keep increasing your risk for various arythmias. Once you get these you will be on ACT anyway. People older than 60, those who do things that make you bleed, or women who want to have children are all great reasons to get tissue; to tell the truth I almost did. For me, I am glad I went the direction I did.

BTW, the ACT is no big deal. I take my pills, check my INR at home. The best part is you will know when he lies to you; his heart rate will spead up the clicking will give him away.

I know this started out because you were trying to figure out your place, but it looks like it turned into a valve choice thread. There are quite a few strong opinions on valve choice and it is a very personal decision, you can see alot of the different opinions and facts in the different valve threads. But make sure you get real facts. In the valve choice forum, there are many threads that have alot of good information, including links to numerous studies or articeles about the different valves.
Since many of the posts here are about why people choose a mechanical valve and are very happy, I just wanted to say many people are equally happy they chose a tissue valve when they were younger than 60.
MANY of the leading centers and surgeons now recomend tissue valves in their patients 40 and up. The main reason is, the stats are about the same IF you choose a tissue valve and REDOs or mechanical valve and a life on coumadin. BOTH have small risks, but they DO both have risks. Tissue you risk having 1 or more repeat surgery and coumadin/mech valve you have an increased risk of a stroke or internal bleeds. (Internal bleeds, especially in the brain are the bleeds most doctors worry about with coumadin, not cuts, that you see the blood and can always stop it)
Some of the reasons they recomend (and younger patients choose) tissue valves is the fact that the stats for REDOS have really gotten much better as more surgeons/center have experience taking care of patients with multiple REDOS and know the safest way to open chests that have internal scar tissue or other things that make REDOS trickier for surgeons) Of course every heart surgery has some risk and people do die, but with experienced doctors the risks for a 2nd surgery are about the same as the first.
Also the latest (since they started treating them with anti-calcification treatments) tissue valves are lasting longer, which plays a part in the reason younger people are very happy choosing tisue valves, as well as how good the studies are going for the percutaneous valve replacements (replacing the valve in the cath lab and not needing to open your chest) Which you shouldn't COUNT on when making the decision of what kind of valve is best, the many of the leading cardiologist and surgeons, believe IF oyou get a tissue valve now, by the time it needs replaced, (even in 10 years) there is a good chance it can be replaced in the cathlab.

I have NEVER heard, by ANY of the doctors we've talked to over 20 years at the leading centers for Congnenital Heart Defects (which some valve issues like BAV are CHDs) That exercise cuts the life of your tissue valve. Also NOT all rythm issues mean you WILL have to take coumadin anyway. That simply is NOT true.

 

[Nancy]

When weighing choices, please do not discount the risk of reops. This has to be carefully thought about. No one can determine what the future holds. If other comorbidities start to crop up and then you have to have a reop, it could be problematical. When you are young, you think that will never happen.

The first and second surgery for most people is not too bad. When there is a third one necessary, the percentage drops. And when my husband needed a 4th valve surgery on his tricuspid, all surgeons and his cardiologist concluded that he would not make it off the table. This was due to a combination of his much operated on heart and his multiple co-morbidities.

I will never forget the very frank discussion with his excellent cardiologist who merely said, "Joe, we are not going to operate on you, we will do our best to manage your symptoms medically", and the frank statement from his excellent surgeon, "He won't make it off the table, I cannot operate on him"

And Joe is not the only one who has had this conversation with their doctors.

 

[dsouter]

My GF of 13 years came with me to all the appointments and was very helpful and supportive of my valve choice.
She was there for the 1st one and her opinion was as important to me as my own. After all, she saw and remembers the things that
are a haze for me.

ACT is not that big a deal although I am still getting used to the 'tick' on quiet nights while struggling with insomnia.

Cheers!

 

[scott.eitman]

12 years ago, 34 years old, I sentenced myself to a 2nd surgery without thinking anything about it other than I did not want to take coumadin.

This year, I put much more thought into it. When told I needed surgery, I wrestled with which valve to get for a couple months. I did not make a final decision until about 2 weeks before surgery. It was not easy. Finally, the people on this site made sense to me. Why plan a 2nd surgery before you get the first. I cannot express enough how much fear I had going into the second one. I cried like a baby, out of fear, as they rolled me in. Recovery is no bed of roses.

I cut myself shaving for the first time this morning...big deal as it barely bleed.

I am an avid bicyclist riding about 3,000 miles a year, and I do not see that changing. It can't. Yeah, I will be a little more worried about going down. But changing my lifestyle will not happen.

I have a 9, 13, 15 & 17 year old who have trouble keeping up with dad.

 

[kfay]

I'm not sure how this thread got away from your original question about learning your place in all of this and turned, once again, into the tissue vs. mechanical issue. If your husband and you are leaning towards one valve type over another, then you should make that choice for yourselves. No one on here is going to be living your lives afterwards but you two. The bottom line between the two is what can you stomach more, subsequent surgeries (yes, there is risk, but for surgery #2, it is the SAME as surgery #1, around 1-2%), or taking daily medication and the risks that go with that medication (yes, there is risk with Coumadin as well). As for HAVING to take Coumadin with arrhythmias, that simply isn't true. I've had arrhythmias my whole life and have NEVER required Coumadin for them.

It's good that you are trying to educate yourself. Have a talk with your husband's surgeon, whom I assume you trust, then make your choice and never look back.

Best of luck to both of you.


Kim

 

[ALCapshaw2]

The Leading Reason for putting patients on Coumadin / Anti-Coagulation Therapy is Atrial Fibrilation which is ONE of several types of Arrhythmias. For other arrhythmias, Beta Blockers are typically prescribed.

From my perspective, the originator of this thread, Ambriz, raised several quesitons about dealing with Coumadin and Mechanical Valves and expressed several unfounded or exagerated fears of those issues, hence the valve discussion.

It is well known that every valve choice has its Positive Attributes and Negative Attributes.
Wresting with those attributes is a common dilemma for patients who are told they need to have their valve replaced. It seems to me that many patients end up choosing a valve whose negative attributes they believe they can best live with.

 

[Eva]

..........I think maybe it would be a good idea to just write down things I think he should ask his doctor when we set up his next appt. I thought about going with him, but I think me being there will add tension.
I'm going to set up his kaiser account online so he can write to the doctor as well.

It is a great idea and very helpful to write down all the questions you have on mind and do not be shy to ask the Surgeon as many questions as you want.
I think it is better to accompany your husband as he needs your support...just being there next to him may give him comfort. Also, you might be stronger than you think you are by the time of the next appointment, and you maybe the one to focus better. I could not focus at all, myself. It was my husband who repeated everything later to me.
But of course, this is only my opinion.

I'm still new to this and my initial impression of the mechanical and coumadin therapy just made me feel as if he was being given a prison sentence of bags of medication and still in his 40's. I can see that's not true now, but I know I'm still not keen on the idea. But I know it's not my decision to make.

It is both your decisions, as you are the ones who will be living with the outcome of your decision. Just as an example, my husband shared his opinions with me and left the decision to me, though I knew what was his in his heart!
I felt like you exactly about Coumadin and that my life would depend completely on a pill!! The more I talked to people about it, the less scared I became. And the angels here on this forum, confirmed that my fears were unfounded and just anxiety!

I'm sorry I hope I didn't offend. I'm still just trying to wrap my brain around all of this and that was just my initial reaction to him telling me that he would have to take some medication for the rest of his life.

As Philip responded to you, I like all to emphasize that you can say anything you like...we do not get offended. We will simply understrand how you feel and how fearful we can get. We were there and we understand. My husband has to take Diabetes pills for the rest of his life, my sisters has to take BP pills, I have to take Synthroid in addition to Warfarin and Toprol for the rest of my life.

Good luck with making the choice and any choice you make will be the right one for you.

Cheers

 

[Nancy]

Ambriz, if you can do it and your husband would like you to, I think you should go to his appts. with him. You can just sit there and listen to what the doctor says, you wouldn't have to say anything. It is very educational. It is also very educational to see just how they examine your husband and what they are looking for. I learned so much when I went with Joe.

I found that Joe, not feeling his best, would many times forget to bring up an important point and I could mention it so he could elaborate on it with the doctor.

I think whether you like it right now or not, you will be a part of his medical life. You will have to be his helpmate after surgery. He will really need you to be there for him.

So, I would really like to nudge you a little to get to the point that you can be helpful to him. It may be that you relied on him for many things, but now he needs to rely on you until he gets to feeling better.

 

[Ambriz]

Thanks Nancy, I told him that I wanted to be there as much as possible and go to the appts and he said he is fine with it. (lol I'm reading parts of this thread to him and he is laughing at the thought of me helping him with things, you are right, he does most of the work around here)

 

[Ambriz]

Ambriz,

Your analogy about a prison sentence with bags of meds wasn't offensive. There are lots of varying opinions out there and even among members here about coumadin. Yes, there are some members here who suscribe to the opinion that it's a bad drug and should be avoided at all costs; those folks are entitled to their opinions. I simply don't share their opinions because My experience with the drug has been positive.

I've been in some pretty bad accidents since starting to take the drug in March 2007 and I'm still here. This said, do make sure to weigh all of the information and opinions you can find. Well-informed decisions require looking at lots of information.

Personally, I wouldn't be honest if I didn't admit that I had concerns about being on a drug for the rest of my life following AVR surgery. Those concerns were resolved pretty quickly.

-Philip

Thanks, I'm glad you posted because I was afraid what I said bothered you. I'm trying to read about the coumadin as much as possible. The drug sounds scary but watching my mom on it and it didn't seem to bother her much outside of a couple of nosebleeds and having to make trips to the doctor to get some things checked, so maybe I'm making a mountain out of a molehill. I still think that if i were facing this and had to choose that I would go for the biological one. So sometimes I'm confused and amazed that the idea does not seem to bother my husband at all.

 

[Ambriz]

As Philip responded to you, I like all to emphasize that you can say anything you like...we do not get offended. We will simply understrand how you feel and how fearful we can get. We were there and we understand. My husband has to take Diabetes pills for the rest of his life, my sisters has to take BP pills, I have to take Synthroid in addition to Warfarin and Toprol for the rest of my life.

Good luck with making the choice and any choice you make will be the right one for you.

Cheers

I guess it's just an adjustment I have to make in my mind. I guess I just didn't expect either of us to start on the "bag of medications" for another 10 years or so (if that makes sense) I just expected/hoped that all the illnesses and things like that would not hit us till we had gotten into our late 40's or 50's. I really wish we had found out about this years ago so we could have both had lots of time to get used to the idea like some of the people here I've been reading about..

 

[Nancy]

I've got news, no matter what age a serious medical problem shows up, it will always be a surprise and a scary disappointment. Medical problems can show up at any age and none of us is prepared to deal with it until it actually happens.

So, yes, this is an adjustment phase for both of you. But you will learn things and by learning things, your fear will be lessened.