Still not sure!

[akaShei]

I know there's still time (2 weeks), but it's frustrating that we're not able to stick with one decision & be happy with it. The readings & comments on tissue valves have him still wondering. We were looking at the Cleveland Clinic website & saw that nearly 75% of aortic valve replacements are done with a tissue valve! I would imagine that a good number of these patients are young to middle-age adults. If he were to go with a tissue valve, he'd be going against his cardiologist's & surgeon's advice, though.

Regarding the On-X valve and the study on lower ACT, your cautionary comments are very much appreciated and will be greatly considered. The ON-X will definitely be the choice of valve if he decides to go with mechanical, but he's not sure about participation in the study.

About the aorta, it is at 4.1 & his doctors are not concerned with replacing the aortic root. There was a question at first, but after his CTA, it's apparently not an issue anymore.

Again, I appreciate all of your feedback in the significant others & pre-surgery forums. You're an awesome group!

 

[starfish11040]

I know there's still time (2 weeks), but it's frustrating that we're not able to stick with one decision & be happy with it. The readings & comments on tissue valves have him still wondering. We were looking at the Cleveland Clinic website & saw that nearly 75% of aortic valve replacements are done with a tissue valve! I would imagine that a good number of these patients are young to middle-age adults. If he were to go with a tissue valve, he'd be going against his cardiologist's & surgeon's advice, though.

Regarding the On-X valve and the study on lower ACT, your cautionary comments are very much appreciated and will be greatly considered. The ON-X will definitely be the choice of valve if he decides to go with mechanical, but he's not sure about participation in the study.

I have the feeling that the majority of young to middle-age people who go tissue ARE going against medical advice (unless their occupation or life style mkes them prone to injury). Choosing a tissue valve when you know it means a re-op, it seems to me, is the buy now pay later approach. I know the ACT turns people off but the majority of docs seem to think that the risks associated with it are less than that of a re-op later in life.

BTW, were your docs familiar with the On-X? What was their opinion of it in comparison to other valves?


severe aortic regurg,
just waiting

 

[Ross]

Again, I would not be a study participant. I would however have no problem going with the On-X valve. If my surgeon could have used it on me, that was his first choice, but he needed a graft sleeve attached to it and they don't make it that way yet.

If he's young enough, I say mechanical and hope that there are no more reops in the future. There is no guarantee either way, but why set yourself up for them if it can be avoided?

 

[Karlynn]

Now you know why we are known for having such heated discussions over valve choice , it's very confusing. Many people, including doctors, have their ideas for what is right. We had a thread going a while back that discussed the amount of tissue replacements that Cleveland does. Some saw it as a sign that made tissue the definitive valve choice over-all. Some saw it as a sign that Cleveland isn't taking re-ops as seriously as many here would like them to.

I am one who is a bit mystified as to why doctors are so willing to put their younger patients through additional valve deterioration and more surgery by recommending tissue valves. (This is where some of our members are poised over the reply button in order to mention that mechanical doesn't guarantee no more surgeries - true. It's just not a certainty as tissues are for younger patients.)

I'll just tell you my story - and everyone's is different. My mitral valve gave me big problems prior to my replacement. I had horrible arrhythmia, SOB (shortness of breath) and fatigue. I was in the beginning stages of Congestive Heart Failure (CHF) prior to my replacement. All this was happening while trying to raise my baby and toddler. My VR took place when my "baby" was in kindergarten and my "toddler" was in 2nd grade. My valve replacement was a godsend. But it took me well over a year to 2 years to recover, since I was in such poor physical shape prior to the surgery. The thought of going through all that again wasn't a pleasant one. The busiest time of my life (when my children were in high school) was the time I would have been facing another surgery and putting up with symptoms from valve deterioration. Instead - we took a trip to Europe as a family.

I am someone who cringes at the thought of valve deterioration, more surgery and recovery - because mine wasn't pretty. Someone who had an easy time will tell you it's not a concern for them. Neither of us has the corner on being more right. Your problem arises in that you don't know what your experience is going to be.

And I'm sure nothing I've said has done much for making your decision easier. I would just say if you (meaning you and your husband - you're in this together and in some ways, your part is harder) trust your cardio and you trust your surgeon, educate yourself on their recommendation. Look to other choices. But don't drive yourself crazy. Any choice will be a good choice, because doing nothing is the worst possible choice.

 

[lance]

How much do you know about ACT

How much do you know about ACT

Hello,

First of all whichever valve you decide to choose will be the right one.

How much information has your surgeon and cardiologist supplied you with about ACT? From what my surgeon told me I could be taking something similar to asparin. Actually it was disinformation. No one else told me anything. You're left to learn on your own. According to Health Canada every valve recipient under the age of 70 will be given a mechanical valve to avoid the additional cost of replacing a tissue valve so there was no incentive to honestly and accurately inform me about ACT.

You need to find out everything you can about ACT and think about home testing. Accurate ACT management initially requires the services of an anticoagulation clinic (not your local doctor) to keep you in range.

Something else comes to mind--what about additional surgeries other than valve replacement. In Canada the wait time for a surgery I required was 8 months minimum. It could have been performed in less than a week at the Cleveland Clinic. When I advised I was on warfarin the expected cost jumped from around $10,000 US to $30,000US.

I realize health care is different in Canda to what you are used to. I have been on warfarin for 8 years, home test and am in range about 99% of the time. That's not a bad record, and to my knowledge have not suffered any bad effects from ACT. Do I wish I had known more about ACT--absolutely.

All I'm saying is educate yourself as much as you can about ACT don't enter into it not knowing what you really need to know.

Whichever valve you choose is the right one--you'll be alive and ACT you can learn to live with.

 

[Susan BAV]

Now you know why we are known for having such heated discussions over valve choice...
I am one who is a bit mystified as to why doctors are so willing to put their younger patients through additional valve deterioration and more surgery by recommending tissue valves. (This is where some of our members are poised over the reply button in order to mention that mechanical doesn't guarantee no more surgeries - true. It's just not a certainty as tissues are for younger patients.)...

Adversarial -- or perhaps even antagonistic -- comments bring on heated discussions. And you weren't "poised over the reply button," Karlynn?

-------

AkaShei, I believe everyone has their own definition of "quality of life," based on many different things, some deeply personal and unknown to others; and valve choice can hinge on our personal definition of such.

One simple example of that in my case is that I knew I might need a hysterectomy after my AVR, which I did. This turned out for me to be a fairly simple speed bump in the road of life partly because I am only on aspirin therapy.

(I want to also mention that tissue valves do not promise avoidance of Coumadin because there is the possibility of an ongoing struggle with post-AVR A-fib.)

Also, we can only make the best decision we can with the information we have at present; we don't know what the future will bring for us. A stroke? Unmanageable A-fib? Something else? Tissue growth? Valvular strands? Valve failure? Aneurysm?

When we make our decision, we must not second guess ourselves later based on some future hindsight. We can only make the best decision we can with the information we have at present and we must make peace with that decision.

Best wishes for a successful surgery and outcome.

 

[Karlynn]

Adversarial -- or perhaps even antagonistic -- comments bring on heated discussions. And you weren't "poised over the reply button," Karlynn?

Wow, have to say this totally blind-sided me. Did you notice my smiley face?

And we wonder why RCB doesn't post anymore.

Those who know me here would not have made the assumptions you did. If the rest of my previous post is read, hopefully no one else makes your assumption. I'm only speaking on my 20 years of experience, 15 post VR.

PS - just noticed my second smiley face didn't get in with the "reply button" comment. Even so, can we please give people the benefit of the doubt here? Just added the smiley face where it was intended, so no one else decides to characterize me as antagonistic or adversarial.

 

[LUVMyBirman]

I will agree with Karlynn. Depends where you are in life.

My child was under three when I had my surgery. Like Karlynn...it took me well over a year to recover. Not easy on the patient or the family. I am so happy with my mechanical choice. At this point.....having the busy schedule to manage. I would be up for re-do just about now. Could not imagine. Instead...this valve will hopefully see my child through grad school! Once all of the education is settled. I will crawl back for my last re-do. At least....that is the plan.

Wish you and your husband all the best with your choice!

 

[geebee]

I won't address valve choice anymore but I have to say I was a bit surprised by Susan's response to Karlynn. Since Karlynn's response was over an hour after akaShei's, one really could not consider that to be "poised" over the reply button. In addition, how one would apply the term antagonistic to Karlynn's response is beyond me.

Or, Susan, was your response not meant to be rather mean?

 

[heavyshot]

It appears to me that you are at a point I was at prior to my surgery. I wanted somebody to give me a difinitive answer. The problem is there isn't any. All I can say at this point is go with your gut. Trust YOUR instincts and don't look back. Good luck.

 

[Superbob]

That's one of the built-in limitations of Web postings -- all the smiley or frowny faces in the world can't reflect all the nuances of what's being said. I bet Susan was just saying that tongue in cheek about Karlynn being poised to reply from her point of view. Anyway, let me chip in that I am grateful for Karlynn sharing her thoughtful perspective on this and other issues, even when my perspective may differ a bit from hers.

 

[twinmaker]

I was basically in the same situation as Karlynn except that I had already had a mitral valve repair and was facing another OHS to replace my valve. My repair happened before our children were born and it was done so we could have our family. My repair lasted seven years. Our daughter was five and our twin boys had just turned three when I had my replacement. I was offered one of two mechanical valves. There was no talk of tissue valves. Of course, this was over 25 years ago. I went with the St. Jude mechanical mitral valve (was not approved yet by the FDA at that time) and it has served me well. It will be in me 26 years in August. I'm 54 years old. I've had one serious bleeding episode with my coumadin early on, but that was before they started doing INR's and were only doing Protimes and they weren't as accurate (at least that's my understanding). I guess that's a pretty good track record for taking Coumadin for over 25 years. We all have to make our own choices and I know sometimes it is hard, especially now a days with the different choices. I guess I had it easier...not that much to choose from. LINDA

 

[Susan BAV]

Quote:
Originally Posted by Karlynn
"Now you know why we are known for having such heated discussions over valve choice...
I am one who is a bit mystified as to why doctors are so willing to put their younger patients through additional valve deterioration and more surgery by recommending tissue valves. (This is where some of our members are poised over the reply button in order to mention that mechanical doesn't guarantee no more surgeries - true. It's just not a certainty as tissues are for younger patients.)..."


Quote:
Originally Posted by Susan BAV
"Adversarial -- or perhaps even antagonistic -- comments bring on heated discussions. And you weren't "poised over the reply button," Karlynn?"

-------

So this comment apparently annoyed/offended [some unnamed Valvers] and maybe others. I'm now annoyed/offended at being called and/or considered blind-siding and mean and assuming, among other things. (And suggesting I contributed to driving an older member to not post anymore because I posted my opinion here and now, in response to someone who was posting their opinion here and now, and our opinions differ?!? Really! For the record, I never got into it with that member who is mad and doesn't post right now.) Shall I sprinkle smilies all over this paragraph now?

By definition, being adversarial is being opposed to another without necessarily having hostile feelings; and being antagonistic is somewhat similar but with a goal of striving for victory. I double checked those specific definitions before I posted the comment.

I was reminded, when I read the post I was originally responding to, of another Valver's comment [elsewhere] that sometimes Valvers champion the valve they have because it validates their decision. Thus the "non hostile feelings" and the "striving for victory" both seemed to me to apply here.

I think anyone familiar with my posts would agree that I don't try to blind-side or be mean. I thought my intent was clear and it wasn't meant to blind-side or to be mean.

By the way, the last time I checked, it isn't Mechanicals vs. Tissues. We are, all of us, allowed to "poise over the reply button;" but hopefully our comments are supportive.

Now primarily what I thought was assuming and adversarial -- or perhaps even antagonistic -- was the comment that, "...doctors are so willing to put their younger patients through additional valve deterioration and more surgery by recommending tissue valves." This is the primary comment that "heated" me up. And no smiley can fix that one.

And regarding the experience some like to shake at the "newbies" when all other reason fails: Yes, I've only had a new valve for three and a half years now but I've been dealing with having a heart issue for my entire life and I had my first heart surgery over 27 years ago.

But I certainly know that I don't know everything; and the valve I chose may or may not work for others.

Was that heated?!?

 

[Susan BAV]

Adversarial -- or perhaps even antagonistic -- comments bring on heated discussions. And you weren't "poised over the reply button," Karlynn?

Wow, have to say this totally blind-sided me. Did you notice my smiley face?

And we wonder why RCB doesn't post anymore.

Those who know me here would not have made the assumptions you did. If the rest of my previous post is read, hopefully no one else makes your assumption. I'm only speaking on my 20 years of experience, 15 post VR.

PS - just noticed my second smiley face didn't get in with the "reply button" comment. Even so, can we please give people the benefit of the doubt here? Just added the smiley face where it was intended, so no one else decides to characterize me as antagonistic or adversarial.

----------

 

[Wise]

Adversarial -- or perhaps even antagonistic -- comments bring on heated discussions. And you weren't "poised over the reply button," Karlynn?


----------

Posts like SBAV's are making these types of discussions worthless. I'm considering never ever reading anything again having to do with valve selection.

 

[Marguerite53]

Hi Shei. Just want to wish you well with your ultimate decision. It is a difficult one, but ultimately, the important thing is that it should grant your husband continued life on the planet. Whether he's ticking like a clock or moo-ing like a cow will not matter so much when his heart rejoices in its new perfection.

I think the comments about lifestyle, future concerns.....all these things weigh in on a decision. Everyone is different. You have to look deeply into your own beliefs about how you think your future should look.

I think it is VERY important to go with the valve your chosen surgeon has experience with and is confident in. If you do not like his valve choice....seek out another surgeon who has experience putting in the valve of your husband's choice.

A lot of what you are feeling is the fear of the unknown which we all fear. It is the nature of the beast. These are huge events in our lives. What you want most of all is a successful event. Confidence is a key element in success. I think it would be very wise for you to have another conversation with your surgeon and let him talk to you some more about his choice. Even if he thinks he is repeating himself....too bad....you need to hear more from him. You will hear his confidence, you will assess his reasoning....it will be helpful to you. Please call him again. He has time for you. He is not the god-like figure we all suppose them to be....he is human. He understands your trepidations.........but not unless you confess them to him!! Call him.

Good luck!

Marguerite

 

[PJmomrunner]

What the heck happened to "Be kinder than necessary, for everyone you meet is fighting some kind of battle" ???

 

[Ross]

It appears to me that you are at a point I was at prior to my surgery. I wanted somebody to give me a difinitive answer. The problem is there isn't any. All I can say at this point is go with your gut. Trust YOUR instincts and don't look back. Good luck.

If your mind cannot decide, yes, listen to the gut! The gut is seldom wrong.
The main thing is to get it fixed. It isn't going to do any good if no choice is made, so any choice other then none is good.

 

[Kate]

Hello!
I'm one of the "young to middle age" people who decided to go biological. I did a great deal of research and thought hard about my decision and, I have to say, am very happy with it. Having my surgery at 38, I am looking at multiple resurgeries (hopefully two, perhaps three). For me, the incredible resurgery success of the Cleveland Clinic (which I am lucky enough to be only a few hours away from) made this seem like the better choice compared to years of anticoagulation therapy, with its daily stress and bleeding risks. Although I freely admit that this is not the right choice for everyone, it was the right choice for me.

This is a very important decision, and I'm sure you will come to the best decision for you. Read as much as you can (Tobagotwo has some very good posts on this subject) and reflect upon your own personality and lifestyle. The main thing is to not second guess yourself once the decision has been made. Unfortunately, I think one negative side effect of the need to make this decision and not look back is the partisan viewpoint that many of us develop. Because the decision has real ramifications and is not clear, it is sometimes easier to reject the positive aspects of "the road not taken". I'm sorry that there has been some squabbling in your thread, but I hope you can see it as simply a reflection of how seriously we all take this issue. Take care, Kate

 

[tobagotwo]

Whatever your husband decides to get, he should consider pushing for his dilated aorta to be stabilized. At his age, with a bicuspid valve and dilation begun, it's very likely to keep growing, particularly after the surgery, which seems to get some of them started moving faster.

From eMedicine, added coloration mine: http://www.emedicine.com/emerg/topic942.htm

For the thoracic aorta, a diameter greater than 3.5 cm is generally considered dilated, whereas greater than 4.5 cm would be considered aneurysmal.
The cumulative risk of rupturing a TAA is related to aneurysm diameter. In a recent series of 133 patients with TAA, risk of rupture at 5 years was 0% for diameter less than 4 cm, 16% for diameter 4-5.9 cm, and 31% for aneurysms greater than 6 cm in diameter.

A TAA is a Thoracic Aortic Aneurysm (generally aneurysm of the ascending aorta). He's 4.1. If he gets a carbon valve to avoid further surgery (which I would likely do with an On-X at his age), and doesn't have the aorta stabilized, the chances are he will eventually have to have resurgery for the aneurysm anyway.

Just something else to chew on.

Best wishes,