Trying to learn "my place" in all of this

[Ambriz]

My husband is 41 and from what I have been reading, were it me, I would want the tissue valve. I've told him what I think, but wondering if I should not stick my oar in when it's not my heart and life. Wondering how significant others felt about telling their partner what they preferred as far as surgery.

When I think of it, I feel as if im being very selfish because I am wondering in addition to him having to deal with coumadin therapy, how it would affect me having to assist with this. Also worried about how this will affect his quality of life if he got the mechanical valve. We are still pretty far from retirement age, but our kids are 17 and 19 and we were both looking forward to having time to ourselves pretty soon to start doing things, maybe traveling, some road trips.

So yeah, I feel very selfish and self centered thinking of my own needs and wants in regards to his heart valve...and trying to resist the urge to start bombarding him with info.

His doctor just told him he would get the mechanical one and he just accepted what the doctor said. I don't think he is looking on the net like I am and is thinking of his options.

Wondering if anyone else has had these feelings and how they dealt with it.

 

[sweetbanker]

Some folks think the doctor knows best and you need to let your husband know this may not be the case. You are in this together his decision effects you too. Sit down with your hubby armed with all the pros and cons of the type of valve and then you both can come to a joint choice.
I went with tissue , mine and the Doctors choice . I am 48 years old and felt in 10--15 years or more if the valve needs replacement there should be alternatives to open heart surgery.
Wish you and the family much luck.

 

[Cherie']

As someone who just underwent OHS, along with the ascending aorta replaced, & the aortic root this is a surgery I would never want to submit myself or a family member to this surgery more than necessary. The surgery was far worse than anything I ever imagined. The pain was excruciating (I delivered my kids naturally with 36 hours of labor and no drugs, so I have a high pain tolerence.). I am 46, non smoker, low cholesterol, low BP, not overweight and was in good health. Even with the vibration issues I am having with my mechanical valve i would neveer want to undergo the surgery again. If you choose tissue, you are commiting to another surgery before you even have had the first. I dont want to even imagine doing this again. There are no guarantees how long the tissue valve lasts. You will read here that some have failed after 5-6 years. I do think that you can give your husband your opinion, but ultimately the decision needs to be his as he is the one that will need to endure multiple surgeries. The coumadin really is not that big of an issue. People here all have different opinions and have had varying experiences, but this is just a little food for thought.

 

[dick0236]

I am wondering in addition to him having to deal with coumadin therapy, how it would affect me having to assist with this. Also worried about how this will affect his quality of life if he got the mechanical valve. We are still pretty far from retirement age, but our kids are 17 and 19 and we were both looking forward to having time to ourselves pretty soon to start doing things, maybe traveling, some road trips.
.

Valve choice is very personal and that is his to make, with your input. However, in answer to your questions.....coumadin/warfarin will have little affect on you and should require very little, if any, of your time. My wife is an RN and the times she has had any input in my INR management can be counted on one hand.

There should be no reason for a mechanical valve to affect "quality of life"....mine certainly hasn't suffered. I have traveled, in the USA(including Hawaii and Alaska), South America, Canada, and Europe, played sports with my kids, built a vacation cabin, etc., etc. Never thought twice about my valve.

Warfarin can sometimes be a pain in the A--, but for me, it is a little price to pay to avoid the certainty of additional surgeries. Incidently, my valve is two(2) years older than your husband is.

It really matters little to me, which valve people choose, since we have to live with our choice, but the choice should not be based on fiction, superstition, or "old wives tales".

 

[Lily]

My husband is 41 and from what I have been reading, were it me, I would want the tissue valve. I've told him what I think, but wondering if I should not stick my oar in when it's not my heart and life. Wondering how significant others felt about telling their partner what they preferred as far as surgery.

When I think of it, I feel as if im being very selfish because I am wondering in addition to him having to deal with coumadin therapy, how it would affect me having to assist with this. Also worried about how this will affect his quality of life if he got the mechanical valve. We are still pretty far from retirement age, but our kids are 17 and 19 and we were both looking forward to having time to ourselves pretty soon to start doing things, maybe traveling, some road trips.

So yeah, I feel very selfish and self centered thinking of my own needs and wants in regards to his heart valve...and trying to resist the urge to start bombarding him with info.

His doctor just told him he would get the mechanical one and he just accepted what the doctor said. I don't think he is looking on the net like I am and is thinking of his options.

Wondering if anyone else has had these feelings and how they dealt with it.

Many years ago my dad's doctors wanted him on ACT for some arrhythmias. My mother felt like he wouldn't take care of himself properly on it.

There are many things to consider, in regard to it. Can you and your husband discuss this in more detail with the cardio?

Being on ACT should be something most individuals must be willing to be personally responsible for. Home monitoring can probably make the experience easier for most people.

 

[ALCapshaw2]

Ambriz -

The downside of Mechanical Valves is AntiCoagulation Therapy (ACT) for the rest of his life.
The Key to ACT is having a Good Manager or learning to Self Test and Self Dose.
There are several Dosing Guides and/or ACT Calculators on-line now.
Most people can deal with one or the other of these options without too much difficulty.
(See the Anti-Coagulation Forum)

The downside of Tissue Valves is that they 'wear out' and wear out Faster in younger patients (under age 60),
sometimes in just a few years. The Bovine Pericardial Tissue Valves have a good record approaching 20 years when implanted in patients over age 60 (and 10 years in young women who choose them in order to bear children). Porcine Valves tend to wear out faster than Bovine Tissue Valves.

You can learn more about Valves in the Valve Selection Forum.

'AL Capshaw'

 

[Philip B]

Choices

Choices

First, what's wrong with getting a mechanical valve? I've got one and it's never stopped me from doing what I want to do. If you've been paying attention to the remarks made here by members when this topic comes up, you'd realize that a large number of us live normal, active lives with mechanical valves and have few issues with coumadin management. I think there's an old post entitled something along the lines of coumadin it's not to be feared.

Second, regarding your place in all this... sure, valve choice is a personal thing, but there's nothing wrong with discussing options with your spouse and engaging in researching those options. My wife played a role in the decision-making process. She still plays a role as she insists upon asking me if I've taken my coumadin every night. I don't see that as a bad thing. Frankly, I think she sometimes wishes AVR surgery and that my mechanical valve had slowed me down just a little bit... she has a hard time keeping-up.

Third, if you're going to be involved in this, please make sure that you are basing your conceptions on facts rather than nonsense.

-Philip

 

[Marguerite53]

Isn't this place wonderful??? So many people sharing so much experience? We are all different!! Before you spend too much time as the significant other here, could you please invite your husband to join us? Let him read (show him -- whichever :wink2 the responses you have gotten so far. Get him thinking. Get him asking questions.

I would like to stress the importance of being educated and informed when undergoing such a dramatic surgery. There is a lot to know! Sometimes it is so overwhelming that you go crazy trying to make sense of it all. It sounds like your husband really trusts his doctor. That is awesome!!! Trust is a hard earned thing in these instances. So is relinquishing control -- which we all must do once the anesthesiologist walks in the room!

What I hear coming from you is an uncertainty borne out of your (quite understandable) lack of knowledge. Please encourage your husband to learn more about what can, could and will transpire for him. Guide him to research some options. For me, I just kind of knew instinctively what my choice was. I researched and thought it through (I had 3 years of waiting to do this in) and I still came back to my original gut choice. Fortunately, my surgeon (who I didn't meet for 3 years) said it was the valve he would choose for himself (we were the same age -- 52). Being on board with the surgeon is incredibly important!

I am a stubborn kind of gal. Had my husband had any inclination to try to change my mind I would almost certainly not have listened to him. The role he chose was to find me a top notch cardiologist who recommended a top notch surgeon and let me work it all out with them.

Best wishes to you both.

Marguerite

 

[Lynlw]

I think alot of what is "your place" has to do with how your relationship with your spouse is. Everyone and every relationship is so different it is hard to tell another couple what to do.
I believe you should learn as much as you can since this DOES affect your life and your childrens, wether you can tell him your opinions or thoughts or how he will accept it, you would know best. Does he usually ask or even listen to what your thoughts are on something big? Does he like you to go to his doctors appts with him and be involved in the discussion with the doctors, or does he go by himself and tell you what was said afterward?
I think it is great you are doing as much research, and hopefully will be able to put some of your fears to rest. So when you are around him
you can at least hide your fears and put on a good face. One thing I really believe is the families members not having the surgery, should basically suck it up and put a positive face on when talking to the person who needs the surgery. The last thing a patient needs to worry about is comforting their spouse or family member all their time and energy should be going to themselves and doing what they need to do to get thru this as easily as possible. They also should not have to worry and keep things to themselves, because they are afraid if they share their fears, they will end up having to worry about the spouse crying ect. IF you need somewhere to vent so you CAN be postive around your husbands, here is a good place (Unless he becomes a member, you might not want to write things that would make him feel worse, in that case find a close family member, friends or pastor to cry to IN MY OPINION.)
Also you said his doctor said a mechanical, since he doesn't need surgery right now, I'm guessing he hasn't spoken to a surgeon. IF a GP or cardiologist told him what kind of valve to get and why, I would want to get the surgeons opinions, since for the most part, surgeons know more about the different valves than the cardiologist. Sometime cardiologist recomend 1 thing and the surgeons have a different opinion.

I know as far as health matters go, I am the one in the family who does research alot and tries to learn as much as I can about something our family is dealing with. My husband tends to not be that interested and knows I will share what I learn and give my opinions wether it is should he take a certain medicine or ANYTHING that involves our son's heart (he is the heart patient) He trusts me and values my opinions on health issues.
Justin is an adult now, but at this point in his life, he still replies on my thoughts as far as his heart and health too.
So IF he needed a valve surgery my opinion about who, where and what would play a big part in his decisions. But for us, IF I needed the surgery, he probably wouldn't offer his opinion and would be there more to support me and help me get thru the surgery and recovery.
I would ask his opinion or what he thinks, but chances are he wouldn't really have any. Altho it would be nice if he did, to be able to use him as a sounding board as I get my thoughts together.
There are other things, like anything to do with electronics, HE is the interested person in and I would just go along with what he suggests.

 

[Ambriz]

One thing I really believe is the families members not having the surgery, should basically suck it up and put a positive face on when talking to the person who needs the surgery. The last thing a patient needs to worry about is comforting their spouse or family member all their time and energy should be going to themselves and doing what they need to do to get thru this as easily as possible.

This is probably the biggest thing i need to work on.

You are all right, this is still fairly new to us, we just barely told the kids. 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.

 

[Ambriz]

Before you spend too much time as the significant other here, could you please invite your husband to join us? Let him read (show him -- whichever ) the responses you have gotten so far. Get him thinking. Get him asking questions.

I told him I opened this membership and was asking questions, I'm am going to mail him pages from here of interesting things I'm reading.

 

[Ambriz]

First, what's wrong with getting a mechanical valve? I've got one and it's never stopped me from doing what I want to do. If you've been paying attention to the remarks made here by members when this topic comes up, you'd realize that a large number of us live normal, active lives with mechanical valves and have few issues with coumadin management. I think there's an old post entitled something along the lines of coumadin it's not to be feared.

Second, regarding your place in all this... sure, valve choice is a personal thing, but there's nothing wrong with discussing options with your spouse and engaging in researching those options. My wife played a role in the decision-making process. She still plays a role as she insists upon asking me if I've taken my coumadin every night. I don't see that as a bad thing. Frankly, I think she sometimes wishes AVR surgery and that my mechanical valve had slowed me down just a little bit... she has a hard time keeping-up.

Third, if you're going to be involved in this, please make sure that you are basing your conceptions on facts rather than nonsense.

-Philip

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.

 

[Nancy]

As the spouse of a much operated on husband, I wholeheartedly agree with many things Lyn said.

Don't try to make the decision about valve choice for your husband. It is a very personal choice. What you can do that would be very helpful is to give him whatever information you find about choosing valves, but make sure it is balanced, so that he has good info.

And try your best to keep a positive perspective on all of this. The surgery is basically a fix for his problems. It is difficult, yes, of course, and he will be going through a lengthy recovery period, that's a given. But he will get his life back and his heart will be better.

I always did my very best to put on a happy face when visiting my husband in the hospital. And I tried to look my best. I wanted him to feel good when he saw me, not discouraged and down. I always figured that if I needed to cry, I could go home and have a good cry. But I never did it when I was with him.

His will to live kept him in this world much longer than any of his doctors thought possible. He lived to be 75 years old with many, many co-morbidities along with his heart situation. But he never gave in,

We worked as a team, and we were very successful as a team. I was his advocate and I was a strong one. When he couldn't speak for himself, I did the talking for him.

I did everything I could do to learn about his conditions so I was able to converse with his doctors in their own language. That was important.

So, this is your assignment. Start learning about your husband's health condition, read until your eye feel like they are going to fall out. You will be very busy, but you will be on the way to really helping your husband with what he really needs, a knowledgeable spouse and advocate.

If you do this, you will have little time to feel bad about it all. You will be way too busy with much more useful things.

 

[Nancy]

Oh, I forgot to add that Joe had two mechanical valves and was on Coumadin for years and years and years. His first surgery was when he was in his 40s. Coumadin for him had fewer side effects than ANY of his other medications.

 

[Lynlw]

This is probably the biggest thing i need to work on.

You are all right, this is still fairly new to us, we just barely told the kids. 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 isn't easy and can be hard to be positive in front of someone when it is something you are pretty nervous about yourself. Believe me, I know, Justin has had alot of heart surgeries and lots of really bad complications and for a few reasons his last couple surgeries are higher risk than usual. So when I was talking to him, or doctors with him, I focus on getting the facts and telling him things that are positive, such as yes it is risky, but this is why we go to the best hospital and best surgeon who do risky surgeries every day, so you do do well. I focus on thinking good thoughts when I am around him, and know that's my job.
But I also know there will be time later when I can yell and scream and cry and stamp my feet when he isn't around. I also tend not to share my fears with family members who I know won't be able to just be positive around Justin. This is about the person having the surgery and doing everything you can to make it as easy as possible for them, and I believe beside good docctors, one of the most important things is they believe going into surgery they WILL do well and will do all their exercises walks, breathing ect they need to feel better and get home soon. I think the right attitude helps alot so I when talking to Justin (or my Mom when she had her surgery) thats what I focus on.

AS for going to his appts, if he doesn't mind of course, I find when ever we are discussing something really important like heart surgery with the doctors, it is pretty easy to get overwhelmed with all the information and technical parts and as soon as you walk out of the office, your brain starts getting confused and can't remeber exactly what was said. SO it can really help to have another person with you. Then after the appt, you can talk and usually between the 2 of you, everything the doctors discussed is easier to remember. Also if there is another person beside the patient, you here, if you know there are certain questions you both had, even with everything written down, sometimes you just forget to ask things you had questions about, so you might be able to ask something he forgot to ask about. Also sometimes alot of things a doctor says gets a little lost by the time your spouse is telling you everything 2nd hand.
SO is there anyway you could make it that you could go to the appts and make it less tense for him and not add to it? Even if you have to practice asking questions by yourself over and over outloud, so you can ask important questions with out breaking down or whatever you are afraid might happen that would make it more stressful for him, not help? This could be something that when you both look back on you will think of a something you worked together well as a team.

As others said focus on how great the success rates for valve surgeries are, they are even better for young people who are in good shape going into surgery.

 

[Cherie']

Ambriz-
My husband did go with me to appts. and did a lot of research and presented the information to me. I had a very short time between when I found out about my condition and when I had the surgery - basically about 1.5 months. The whole thing was very overwhelming - not only did I found out that I needed serious heart surgery - I not only needed a valve but I had an aneurysm on my aorta, and my root was aneurized. My aorta was replaced up through the arch. I can tell you that facing the surgery is extremely stressful - but in this situation you are not only facing the surgery, but you are having to make the difficult decision what kind of valve you want - which does impact the rest of your life. You may be commiting to a second surgery before you even know what the first one is like. How many other surgeries do you have to make life altering choices? You need to be there for your husband - research, investigate, listen, and support him - but ultimately he has to make the decision because he has to live with the choice. A lot of things entered into my decision - even the fact that the medical schools have reported that the cardiothoracic slots are not being filled and that within the next 10 years there will be 50% less cardiothoracic surgeons. My surgeon will be retired in 10 years and so will all of the ones I interviewed.

I wish you the best. This is not an easy time.

 

[Philip B]

Prison Sentence?

Prison Sentence?

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

 

[Cooker]

Lots has been said on both side of this valve choice card ... we all have to eat the fish and spit out the bones, make the decision that is right for us ... at age 49 a tissue valve would have meant another surgery in the future ... would there be advancements, maybe ... one thing I was concerned with was my health when time for a second surgery ... as with everything there are no guarantees but I have seen friends and family have unexpected health changes, changes that would have complicated if not prevented an open heart surgery if needed ... I am not exempt from unexpected health issues ... now, I gamble a bit and I'll flip a coin with you for $100 but I wanted better odds on avoiding future surgery ... peace out

 

[AgilityDog]

Having just had my second heart surgery to implant a mechanical aortic valve and repair my tricuspid valve, after receiving a mechanical mitral valve 4 years ago, I can tell you I NEVER want to do this again, even though this second surgery was much easier on me than the first, in part because I was healthier, and in part because I was an "old hand" at it.

Coumadin can be a PITA, but it has rarely interfered with me doing what I want to. I DID once cancel an agility trial because my INR was 6.something, and I was concerned about being worried and distracted during my run and thereby causing a fall, and not doing justice to my dog. That is the only time it ever interfered.

But no, I NEVER want to do this again, and am very glad I chose mechanical.
I'm now 51, was 47 for my first surgery.

 

[Nancy]

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