Heart Valves and Second Opinions

[ALCapshaw2]

FYI, a new member, MNmom, stated that her "tissue valve" had deteriorated to the point where it needed to be replaced after 10 years. She just clarified that she has a Bovine Pericardial Tissue Valve which was implanted when she was 20 years old. This is about half the expected lifetime for the same valve if it were implanted in a 60 year old.

 

[strudell]

Just to let you all know, I called my surgeon yesterday to let him know I made the decision to go with the mechanical valve. He thought this was the best choice for someone in my age group.

Talking with a person who heads up my system's Anti-coagulation clinic and the advice found here on this fourm helped me make my decision. I'm very gratefull for both.

My surgeon is Dr. Nemeh at Henry Ford Hospital in Detroit and I have an appointment with him tomorrow to discuss the next steps. He's already trying to schedule my catheterization for next week.

In the back of my mind I can hear: "Please keep your hands and feet inside the cart at all times. Make sure your harness is securely fastioned. Enjoyr your ride"

 

[Karlynn]

In the back of my mind I can hear: "Please keep your hands and feet inside the cart at all times. Make sure your harness is securely fastioned. Enjoyr your ride"

Good for you! Laughter is the best medicine! Best wishes.

 

[ALCapshaw2]

I was scared sh*tl*ss before my first Cath.

When it was all over, I had one of those "Is that all there is?" kinds of reactions. I actually ENJOYED watching the catheter being moved around inside my coronary arteries.

Weird, I Know.

'AL Capshaw'

 

[tobagotwo]

I was almost entirely awake for the cath, and it wasn't bad at all. Like you, I wasn't thrilled with the idea beforehand at all, though.

Al, The cath delivery of a valve is like an angioplasty. They first mash the old valve into the walls of the heart, then expand the new one into place like a stent. As such, it's not the diameter inside the old valve that you're dealing with, but more the same diameter outer wall the original valve had.

Best wishes,

 

[Bina]

I only had 1 day notice before my cath.....no time to research, just enough time to freak out.
So, when they offered me a mild tranq, I graciously accepted.
Then I kind of floated through the cath. No big deal. Fabulous bruise afterwards.

 

[Sean L]

I didn't have time

I didn't have time

I knew about my problem about a year ago and was given medication and told to follow up in six months. I folowed up in six months and then was told it had improved and told to follow up in another six months. I switched doctors because of insurance plans and the new doctor got all excited and said the old doctor made the wrong decision and said I needed surgery ASAP. He did more extensive echo and found that I had severe regurgitation of the aortic vavle instead of minor to moderte as the prior one suggested. He also was concerned of my extremely low heart rate. The new cardiologist did not give me time to seek too many second opinions and I had to have the surgery by the on call surgeon as the cardiologist was worried my heart had already suffered permanent damage. Luckily I had done enough research to come to my own conclusion which vavle to get and I told the surgeon and he agreed with my decision.

Anyways, my point is that you may not have time to shop around. If you do, question any surgeon that recommends you get a tissue valve. I am not saying don't get a tissue valve but make sure you think about it. For me, I love sports and martial arts. Especially Brazilian Jujitusu. However, in spite of this I chose a mechanical vavle and will take blood thinner. The reason for this is I did not want to risk having to have another operation in 10 to 15 years to replace a tissue vavle. Yeah, I know some studies say the newer ones are lasting longer etc. but there is still no proof they last as long as the mechanical vavles so I wanted the least risky choice.

Hope my two cents helps.

Sean

 

[sknydave]

The cardiac cath was very interesting. My doctor told me most of the patients fall asleep from the happy medicine they give you, but I wanted to watch everything. It was a neat experience. Afterwards the pain isn't too bad at all

 

[Robert]

Its good to see you chose the mechanical valve path. After so many issues with tissue/animal type valves in the past I have had the last 7 years worry free due to a fabulous little St Jude item

 

[strudell]

Well I had my cath on Friday and it didn't go as bad as I thought. I'm still a little sore in the groin but fine.

Next Monday is my OHS. I am very pleased with the level of service that my Surgeon has so far provided. I'm still a little nervous about the whole breathing tube thing, but I know I'll be fine.

See you on the other side!

 

[ponygirlmom]

I met with my surgeon last week (Thursday) for the first time and he was very nice. Basically I will need to have the surgery in the next month to two months.....

So now I've had three Doctors review my results and all have said that I need surgery soon..... My frustration right now is getting a second opinion..... I know I need surgery, but I just need additional advice on the Type of surgery and the Type of Valve to get.

I know I'm late to this party because so many people have already responded, but I really don't understand how a "second opinion" applies to your case.

You actually have four doctors telling you to have surgery soon, so I think that decision is covered.

When it comes to the type of valve, you actually have no opinions, because the surgeon left it up to you. At first it sounded like you had already decided on a mechanical valve, but now it sounds like you aren't sure.

When it comes to valve type, I think asking people -- like the people here, for example -- who have the various types of valves how they are working out. Think about the way you like to live your life and if the type of valve will fit into it. I don't think an MD can help you make that decision, although come to think of it, a counselor or psychologist might, because he or she could help you weigh the impact on your life of coumadin vs. more surgeries in the future.

 

[Ross]

I know I'm late to this party because so many people have already responded, but I really don't understand how a "second opinion" applies to your case.

You actually have four doctors telling you to have surgery soon, so I think that decision is covered.

When it comes to the type of valve, you actually have no opinions, because the surgeon left it up to you. At first it sounded like you had already decided on a mechanical valve, but now it sounds like you aren't sure.

When it comes to valve type, I think asking people -- like the people here, for example -- who have the various types of valves how they are working out. Think about the way you like to live your life and if the type of valve will fit into it. I don't think an MD can help you make that decision, although come to think of it, a counselor or psychologist might, because he or she could help you weigh the impact on your life of coumadin vs. more surgeries in the future.

Ponygirlmom how has Coumadin affected your life? I take it everyday and it hasn't affected mine at all other then testing once a week. I go about doing what I want without too much thought. What I'm getting at is a person limits themselves on what they do, not the Coumadin. If a person adheres to their testing and maintains their range, there is no reason to have any impact on a persons life taking Coumadin. Take a look at the active lifestyles forum. Many Coumadin users there are doing things that some of you have already written off as not being able to do them anymore.

Looking at your profile, you haven't had surgery yet? May I suggest a Coumadin course at the following link:http://www.warfarinfo.com/warfarinfo.com2.htm

 

[Superbob]

Well I had my cath on Friday and it didn't go as bad as I thought. I'm still a little sore in the groin but fine.

Next Monday is my OHS. I am very pleased with the level of service that my Surgeon has so far provided. I'm still a little nervous about the whole breathing tube thing, but I know I'll be fine.

See you on the other side!

Sounds like you have made the preps and decisions, and now it's just waiting, which can be tough, I know. As far as the breathing tube, many wake up to find it's already out, many (like me) find it's still in in the ICU but not a problem. I worried about it beforehand, but it turned out to be friend, not foe. All best wishes as you go forward....

 

[Karlynn]

I hated the tube when I woke up. However 16 years ago I didn't have this site with the advice I read people give of concentrating on breathing with the tube. I came upon that realization after fighting it and it was much easier and out shortly after.

Some people don't even remember the tube because they were still pretty out of it when it was taken out. Maybe that will be you!

I know that you will do just fine!

 

[Ross]

There will always be those of us who take it daily and tell you all how it is for us and those that will tell you how it should be according to documentions. Yeap, it's never ending.

Make a choice, roll your dice, move your mice.

 

[ponygirlmom]

Ponygirlmom how has Coumadin affected your life?

I must have written one of my responses in a confusing way, because I don't take coumadin. I do know a woman who has to take coumadin for a heart issue. As it happens, she had to begin her coumadin right after my surgeon ruled out a mechanical valve for me. I see up close and personal how it affects her life, including the effect at different dosages.

My surgeon said that he could use a mechanical valve if I would like, but he recommended against it. His reason? It is too dangerous to do the things that are dearly important to me while on coumadin. I know you disagree, but his daughters are also into equestrian sports, and he knows exactly the types of injuries, tiny to large, that I get or could get, and how much more dangerous they are while on coumadin. He said that I, personally, should not take it.

So when people ask "what valve are you choosing?" I say which one and why. That doesn't make it the right choice for someone else. For someone else it could be the totally wrong choice. It's what I, personally, chose, and I always try to make this clear.

 

[Karlynn]

I see up close and personal how it affects her life, including the effect at different dosages.

Just a little explanation here. The strength of the dosage is not something that should be affecting anyone's life. It is all about what range your INR should be in for specific medical needs. For example, a mitral mechanical valve most often has an INR range of 2.5-3.5. I currently take a dose of 82 mgs/week of Coumadin to maintain that INR range. Someone else may only need to take 35 mgs/week to maintain that INR range. The fact that I take over double the amount of Coumadin does not mean that I am any more at risk for bleeding or stroke. If our INR is the same and we both cut ourselves, the fact that I take so much more will not mean that I will bleed any longer.

I feel no differently now at 82 mgs/week than I did years ago when I was taking 40 mgs/week. It's very rare for the amount of Coumadin one takes to affect their lifestyle or how they feel. It's all about the INR - and it's rare for anyone to be able to tell how high or low their INR is based on how they feel.

 

[ponygirlmom]

The fact that I take over double the amount of Coumadin does not mean that I am any more at risk for bleeding or stroke.

She has been bleeding more on her higher dose; if what you say is true, then there is something else wrong. I will ask her about it when I see her.

 

[Karlynn]

She has been bleeding more on her higher dose; if what you say is true, then there is something else wrong. I will ask her about it when I see her.

Recommend she go to www.warfarinfo.com for tons of very valuable information. In the many years I've been on Coumadin the one thing I've learned the most is that those that manage Coumadin don't necessarily know what they are doing. Or you can even invite her to come on here if she has any questions. We literally have hundreds of years of Coumadin experience here. Chances are, someone has had her experience and can help out.

How is she bleeding? She really shouldn't be just spontaneously bleeding if her INR is in range. If she's bleeding on a higher dose, that means her INR is likely much too high. If she is spontaneously bleeding with an in-range INR- that usually signals something else is wrong and the Coumadin/bleeding is drawing attention to it. People shouldn't assume that the bleeding is "just because" of the Coumadin. Some have told stories of certain types of cancer being caught early because being on Coumadin caused them to bleed sooner with it than a non-anticoagulated person. (I'm certainly not suggesting that your friend has cancer! - Just pointing out why it's important to think past the Coumadin.)

Much of the frustration and disappointment for Coumadin users comes from having people manage it who really don't know what they are doing. We see evidence all too often of so-called experts really messing people up needlessly.

Sorry for hijacking the thread - but I hate to see someone have a tough time with a drug that really isn't tough to manage and if we can help out - that is what we are here for.