Frustrated and angry

[howard]

I am 51 and have known for about a month now that I am at the point of AVR surgery. I have gathered all the facts, talked to everybody (surgeon, internist, cardiologist, psychologist, family and friends and it all boils down to my personal choice of tissue or mechanical valve. Both are terrible choices. I have no idea how I would manage on ACT or how I would respond to multiple surgeries until I have experienced them.

This is a terrible feeling and I am trapped.

 

[Dennis S]

Manageing ACT has not been a problem for the five years I have been doing it. I wouldn't be too keen on a repeat surgery, and that's why I accepted a choice involving warfarin. Many have chosen tissue valves, and come through subsequent surgery(ies) with flying colors. When I found out that surgery was in my future, I felt the same as you. I can tell you from experience that it looks a lot smaller in my rear view mirror.

 

[Jkm7]

The only bad choice is to not make a choice.
All of us with replacements have walked your walk and many of us agree it is a crushing choice.
After research, reading and discussion with all the professionals, there was no question that for me, tissue (bovine) valve was my first choice and that is what I had implanted 2 1/2 years ago. I am so grateful I made that choice as I had a short course of coumadin after my surgery (many surgeons require that until our own tissue grows over the seat of the valve) and, for me, ACT was undesireable. It was not knowable in advance of my surgery I would require in the area of 100 mg weekly to maintain my correct INR. I hated being on such a high dose and my surgeon agreed that was a lot of coumadin. He had me stop 2 weeks sooner than he expected.

The possible clicking of mechanical valve also was an issue for me.

Another thing for you to discuss with your surgeon/cardio is what they think of the likelihood many valve replacements will be done percutaneously in the near future. They are currently doing them by cath on patients too ill for open heart surgery and my Mass General Surgeon made it very clear he believed that will be the future of valve replacements. If that is the case, there's a strong possibility of avoiding a second surgery. Talk with your doctors to get their opinion.

No one but you can make the choice and you will make the right one for you. Make your choice and don't look back. Don't second guess yourself. They are both good choices as we would not survive without that replacement.

Best wishes.

 

[dtread]

Howard, you're in one of the early stages of grief; see for example: http://en.wikipedia.org/wiki/Kübler-Ross_model
You'll have to work through it. One way some have dealt with it is to let their Cadiologist/Surgeon decide for them. Others have made the choice on their own. I recommend the latter course of action. Gather the facts, weigh the pros and cons, and make the best choice you can based on your fact finding, etc.

Yeah, you got a raw deal. So have a lot of others. Its bad, but you have to learn to live with it.

 

[dick0236]

Both are terrible choices. I have no idea how I would manage on ACT or how I would respond to multiple surgeries until I have experienced them.

This is a terrible feeling and I am trapped.

Unfortunately, there is no right....or easy, answer on which valve too choose.....and there is no wrong answer:confused2:. In a nutshell it does boil down to a lifetime on ACT with probably no future surgeries......or probably no ACT (unless you develop Afib that requires ACT) and the certainty of one or more future surgeries.

Since I know little about tissue valves, I will let someone else address that valve. I have had the same mechanical valve a long time, over 43 years, and it is becoming increasingly more likely that it will last my lifetime. I have never had ACT interfere with my life, EXCEPTyou must follow the simple regimen of taking the pill as directed and test routinely. Otherwise it can bite you.....been there done that. I have always done, pretty much, whatever I've wanted.....from diet, too lifestyle, too activities or interests, with little thought given to the valve. All you can do is research your options and make a choice. The only wrong choice is too make NO choice.

PS: I was lucky. There was only ONE valve available when I got mine:smile2:.

 

[guyinva]

Howard...I'm 51 as well and having surgery on 10/6. I chose the mechanical valve because of my age and the thought of subsequent surgeries did not appeal to me at all. (once will be enough for me!) But as everyone has said, the choice has to be yours. I'm praying that the choice I made is the right one. I read all the literature I could find and to be honest, each one has its pros and cons. I don't cherish the thought of Coumadin the rest of my life but since I was already on it because of A-Fib, it made my decision easier. Good luck in your decision. I was there not that long ago and I know how hard it was for me.

 

[Greg a]

I am 51 and have known for about a month now that I am at the point of AVR surgery. I have gathered all the facts, talked to everybody (surgeon, internist, cardiologist, psychologist, family and friends and it all boils down to my personal choice of tissue or mechanical valve. Both are terrible choices. I have no idea how I would manage on ACT or how I would respond to multiple surgeries until I have experienced them.

This is a terrible feeling and I am trapped.

FIRST WELCOME to the board ..........you are doing the right thing by doing your due dilligence and asking questions of these board brothers and sisters in OHS ....these are all the people that speak wiith experience in every word...........read and ask more questions of the willing and eager to help members

 

[Superbob]

Let me offer you a different perspective: We're damn lucky to be living in a time when medical science can detect heart problems and provide -- with a very high rate of success -- a fix for those problems. Thereby, we get to enjoy many more quality years of life.

It is understandable that you feel down right now. But rather than having terrible choices, you have two good, life-saving ones. A terrible choice would be to have no choice, and just to expire with a heart problem undiagnosed and uncorrectable even if it were detected. Do your research -- there is a heap of info on this site, which has many members willing to share their perspectives -- and then make the choice. It will be a good one.

 

[New Guy]

Howard,

Sorry to learn you need the surgery. I'm 2 months post-op and feeling almost normal. I had 2 bouts of a-fib in the weeks following surgery and since have learned some things about a-fib.

Many people live and struggle with a-fib problems. Often those who get it are treated with ACT just like those of us with mechanical valves. A-fib is not uncommon in people who have had OHS, especially during the healing process. I've learned that people who've had multiple heart surgeries are more likely to develop chronic a-fib.

I'm on Multaq now to control my a-fib and it has done an excellent job. I hope and plan to stop taking the Multaq in another few months and pray I will avoid a recurrence.

I've got concerns looking forward, but OHS for another heart valve is not one of them.

I found great peace of mind when I finally made my decision. I'm sure you will too.

Doug

 

[Lionheart]

Howard,
Yep, its a difficult choice... but only because both choices are so good. Think of it as a kid at the Ice cream store. Vanilla or Chocolate? They're both good. I don't mean to make lite of it because I struggled with the decision too and I'm now happy with my choice. But, I would have been happy if I had chosen the other. Both are good choices. Each carries a little baggage but both can be managed. I was on ACT for a while and it was no big deal, you just have to adjust a little and be compliant with your Rx. Did either your Cardio or surgeon make a recommendation? Unless there is some underlying cause or personal preference otherwise, the I think the American Heart Association (AHA) Guidelines for someone your age suggest a mechanical valve.

Here is a link to a CIGNA insurance site that provides a decision chart to help with valve selection.
http://www.cigna.com/healthinfo/uf4587.html#uf4587-Intro

John

 

[Mentu]

Greetings, Howard

Greetings, Howard

Howard, welcome aboard. Most of us have struggled with the same dilemma - Mechanical or Tissue - how to choose? In fact, there is no certainty for any of us. As several have already said, however, we at least have the option to choose and for most of us that choice brings both a return to health and the hope of many years of life regardless of valve type. When you read the statistical analysis that predicts how long valves will last, keep in mind that they do not predict the experience of any individual. Mechanical valves must sometimes be replaced and some tissue valves have lasted quite a long while. No one knows how long the latest generation of tissue valves will last just as it is not yet clear whether it may be possible to safely stop anticoagulation with the newest mechanical valves.

Which ever valve you choose, Howard, it will let you live in good health for years longer than the one you were born with and that is not a bad choice. You are right, it is not a perfect choice but, then, how often are we presented with perfection. Perhaps, one day stem cell research will enable labs to grow a new perfect valve of our own but that isn't going to happen soon. In the mean time, we learn to live with our imperfect valves but we do live and most of us live normal active lives as will you.

A year ago this week, I could not walk 100 ft on flat ground without panting. Almost every day now I walk several miles along my favorite riverside path. There is no need to stop and catch my breath or rest until I recover strength. Its a great feeling.

Make your choice, Howard, and then don't stop to second guess yourself.

Larry

 

[neil]

howard, which ever you choose is a good choice, so nice to read the answers above with people being so positive about either choice,long may it continue, for what its worth howard i was awarded the cert for being the worlds biggest baby when it came to operations, and i found it not to bad at all, infact i loved all the attention lol,

 

[NealR]

Howard,

Well,,,if anything,,,you are making lots of friends! Lots of experience to draw from. You have to think differently. I think one of the respondents, Howard, or JKM said it best. You have a choice. A generation ago, this choice was simply not there, and that was that. I am your age, and had my surgery almost exactly one year ago. Today, I am in better shape than I was 30 or so years ago. Heck,,,I can't sit still for more than 5 minutes. Best of all, I can still hit a golf ball 300+ yards. Mechanical, Tissue, both good choices. They both work! A lot of mechanical users on this site, and appears almost all of them are doing quite well. Tissue users, well,,,read the news. It's on literally every periodical: Heart Valve Replacement Surgery to change,,,,One respondent listed percuntaneous catherized procedures,,,well,,this is the most exciting new there is. If you have XM radio, I would suggest you look up a channel called Dr. Radio, and search for the very next airing of Ribicove and Schwartz. Two leading Thoracic Surgeons who I am sure, will now be talking heart valves in light of the latest buss on replacement valves.

But like everyone is telling you..you have a choice. Not everyone is so fortunate.

 

[nngbwh]

Welcome aboard, Howard. Hope you are finding VR helpful. If you look through the forum there are tons of information on tissue or mechanical valve and ACT.
Best wishes and good luck. Keep us updated.

 

[Cooker]

I am 51 and have known for about a month now that I am at the point of AVR surgery. I have gathered all the facts, talked to everybody (surgeon, internist, cardiologist, psychologist, family and friends and it all boils down to my personal choice of tissue or mechanical valve. Both are terrible choices. I have no idea how I would manage on ACT or how I would respond to multiple surgeries until I have experienced them.

This is a terrible feeling and I am trapped.

Howard, welcome to VR.org ... here is a place that you can gain much knowledge and support, please take advantage of it.

I am sorry you are feeling the way you are and let me be the first to say that it is not my place to tell you how you should feel but I would like to share my thoughts with you.

After choosing to go mechanical I entered the hospital at age 49 for AVR ... was I excited about it, no .... was I afraid, yes ... but I also made the decision to choose life ... as Bob has said we are fortunate to live in an age where we can be helped, it was not long ago when people with defective valves had NO option except to die ... anticoagulation is not a problem for me ... I chose mechanical to avoid future surgeries and I feel that I made the right decision for me ... we have members that are young, middle agers and oldsters ... this does not have to be a nightmare ... make informed decisions, choose good health-care professionals and move on ... I am convinced that my life and the quality thereof is immensely better now than it would have been if I had elected to ignore the problem ... I wish you all the best.

 

[hook]

This is a personal choice, and I went with a mechanical. I am 45 years old and do not want to do this again. Aside from almost losing my job, this process was incredibly difficult for my family. Heart surgery recovery is very complicated, and every time you have it done more damage you do to the organ. Many may dispute this, but it is a fact. The truth is, you will be on blood thinning after surgery anyway, which is the most difficult period for weekly testing. Once you get down to once a month testing, that is when tissue recipients are removed from testing. On the other hand, open heart surgery causes afib on many patients, and if you are one of those you will be on blood thinners anyway.

On the other hand, if there was a tissue valve option that was catheter based, and can be replaced several times using the same method, I would be all over that.

From my experience, the difficult part of this was not recovering from the rib spreader, but the damage done from cutting into the heart. Whatever process is available to minimize this is the direction I would take. That’s my opinion only and I wish you the best in your decision .

BTW, managing anticoagualtion has become no big deal now that I have a home testing device. I put my AM and PM pills in pill box that helps me keep up with taking them, and test once every week or two. Most people will take some kind of pill or supliments in our situation, so adding coumadin was not an issue.

Look on the bright side, if you take blood thinners you have reduced your risk of heart attack from blood clots and or stroke

 

[Michelle D]

I have neither mechanical or tissue but I've had complications after my repair that would make me lean on the side of a mechanical valve. I'm not sure if it is because I'm younger (28 yrs old) that I'm having a strong auto-immune response and my nerves are more sensitive but I wouldn't ever want to go through this again. The surgery itself may be quite safe nowadays but there is decent risk of having atrial fibrillation after surgery, there is also a risk of plueral and pericardial effusions, there is a risk of infection, etc. Really I'm not trying to scare you, I just wish they would warn you about these things. But again I had a repair so I don't have first hand experience.

I get upset that I had to go through this but I just think if I were born 100 years ago I'd be dead by the age of 29. Now I can live a normal lifespan.

 

[Lynlw]

This is a personal choice, and I went with a mechanical. I am 45 years old and do not want to do this again. Aside from almost losing my job, this process was incredibly difficult for my family. Heart surgery recovery is very complicated, and every time you have it done more damage you do to the organ. Many may dispute this, but it is a fact. The truth is, you will be on blood thinning after surgery anyway, which is the most difficult period for weekly testing. Once you get down to once a month testing, that is when tissue recipients are removed from testing. On the other hand, open heart surgery causes afib on many patients, and if you are one of those you will be on blood thinners anyway.

On the other hand, if there was a tissue valve option that was catheter based, and can be replaced several times using the same method, I would be all over that.

From my experience, the difficult part of this was not recovering from the rib spreader, but the damage done from cutting into the heart. Whatever process is available to minimize this is the direction I would take. That’s my opinion only and I wish you the best in your decision .

BTW, managing anticoagualtion has become no big deal now that I have a home testing device. I put my AM and PM pills in pill box that helps me keep up with taking them, and test once every week or two. Most people will take some kind of pill or supliments in our situation, so adding coumadin was not an issue.

Look on the bright side, if you take blood thinners you have reduced your risk of heart attack from blood clots and or stroke

It is not necessarily true that IF you choose a tissue valve you WILL be on coumadin anyway in the beginning. Justin has never been on coumadin and a few times this came up asking if other tissue valve patients took coumadin right after surgery and many did NOT. (I used to be able to find the links, but can't the way the search is set up now)

I'm sorry you are so angry right now and think both choices are awful. Hopefully as you make your decision, you will find peace.
BTW it is nice to see another person from NJ here.

 

[howard]

Thanks Neal. I am leaning heavily toward tissue too and hope my experience through this is as much of a relief as yours.

 

[Lynlw]

Thanks Neal. I am leaning heavily toward tissue too and hope my experience through this is as much of a relief as yours.

I was curious if you decided where you will be having your surgery. We're pretty lucky that there are so many good heart centers a couple hours in any direction.