AVR selection

[Jeri]

HI all....I am new to this forum as I am trying to learn as much as I can. I need to have my aortic valve replaced. I feel like a yo-yo.....I am going to be 58 in Jan. and I've been going between tissue and mechanical. I hate the idea of Coumadin as I am very active....besides working out everyday....I like our motorcycle, traveling with my husband, sometimes in our own plane. So Coumadin would be a royal pain!!! Have any of you considered a tissue valve??? I wonder how long it will be before Trifecta valve is available to us? Sorry I am rambling...just don't really know what direction to go in. I live near Pittsburgh and I have met with surgeon already at UPMC....he was concerned also with TAA but after further tests, it showed that it is only 3.8 cm. SO I am in the clear with that. Any comments/feedback is appreciated. I am basically on a fact-finding mission now so I can make a well-informed decision. Thanks for your time and attention. And best of luck Bruce....I wish I could help but at this point, I don't think I would be any help.

Jeri

 

[ottagal]

Hi Jeri,
I feel for you. I wish I could wave a magic wand for you and give you the answer, but unfortunately that is not the case.:rolleyes2:

You may want to check out the sticky on the tissue vs. mechanical choice. Valve choice is a very personal decision. I truly agonized over my decision for quite some time.

After consulting extensively with my surgeon, family and friends, doing alot of research, and reading voraciously on VR.com as well as listening to my gut, I made the decision to go with a tissue valve. It was not an easy decision, but as I said in another post, I made my peace and tried not to look back. I know that I will need more surgeries down the road and am hoping that this valve gives me a good 10-15 years (touch wood). When the time comes for another replacement, it will be another tough decision as to whether I will go mechanical or tissue. For now I am trying to live in the moment.


You will see that the only bad decision is not making one at all. You will read many posts of those who have gone mechanical and absolutely have no regrets. There are numerous reasons why some choose one over the other i.e. other health issues, not wanting another surgery, pregnancy etc. You may want to check out the discussion from other threads on this topic.



All the very best and good luck with your decision,

 

[bdryer]

Hey Jeri

Thanks for the good wishes. I was at first alarmed by warfain. I spoke with as many folks as I could on warfarin to learn from their experiences. I'm confident I can manage the required life time monitoring and minor limitations.

I do not want to go thru life with a tissue valve knowing that I will repeat the process in a matter of years.

I believe the On-x AV is the best choice for me. This after research and hanging with the great folks here. Feel comfortable that you will make the best decision for yourself.

Good luck

 

[Marguerite53]

Hi Jeri. Welcome to this wonderful community.

Since you have already met with a surgeon, what was that good doctor's advice to you regarding valve choice?

I knew about my BAV for more than 20 years. When the news was given to me (routine echo every 5 years) that it was time for AVR I, too, started researching valve choice. My gut instinct told me to go tissue. The more I read on this forum, the more I researched, the more it just gelled for me. I believed everyone here who said that coumadin was no big deal. But for me, it just didn't sound like the way to go. I think having animal parts rather than purely mechanical parts appealed to me. I think taking no drugs appealed to me. I didn't like the idea of monitoring -- I'm rather lazy about such things and that sounded dangerous -- to not be exacting and on top of the INR levels. So when I went in for my surgical consult and my surgeon told me (he was my age exactly, 52) that the valve I was inclined toward was the exact valve he would choose for himself or for a family member who had my exact needs. I just never hesitated to choose tissue.

I was aware (and I hope you are, too) that coumadin-takers include people with tissue valves. Sometimes this just occurs as necessity. Sometimes you choose tissue and then the surgeon gets in there to take a look and something about your physiology demands that they use a mechanical valve. So it is fine to make your choice, but ultimately, you choose a surgeon you trust and you just go with the flow. The beauty of this is -- you get to LIVE!! Truly, that is remarkable stuff.

Valve choice is very personal. Valve choice has a lot to do with your personal physiology. Talking at length with your surgeon might help. Never be afraid to call him umpteen times if need be.

Good luck in your decision-making. Really. It is a tough one and we all appreciate that; those of us who had enough time to make an educated (well, in layman's terms only) choice.

Marguerite

 

[Philip B]

Royal Pain?

Royal Pain?

Royal pain??? Perspectives obviously vary, but I've never felt coumadin presented any difficuties at all. It amounts to taking a pill or two every day and sticking my finger once a week. I guess the weekly finger stick gives me some pain, but that's about it. It sounds like you're buying into some of the misconceptions that result in some of the drama involving coumadin.

Why in the world would coumadin prevent anyone from altering activities like riding a motorcycle or traveling by small aircraft? Sorry, but there's no logic in worrying about stuff like that. Coumadin won't stop you from doing either.

-Philip

 

[dtread]

Jeri, you're at the same age I was when I had my AVR. At first I wanted to go tissue, but after researching it I recognized that the reoperation factor with tissue valves was just too much. Very depressing and daunting to know that you'll be going under the knife again in a few years. If you're into working out you'll have to factor the recovery time from the operation into your overall training plan. For me I was back about 70% - 75% of preop condition within about 3 - 4 months. However, to get that 25% - 30% of conditioning to get back at or near 100% preop physical condition really took me about a year. So, with a tissue valve you have to factor in repeat surgery downtime into your overall training. Also, not sure what the degradation factor is for the functionality of tissue valves in the later years before they need to be replaced. I guess you should try to factor that in too. And the risk. I guess some folks sort of breeze through the surgery without complications, but that was not my case. My surgery came pretty close to killing me. I agree with Philip B that the Coumadin has been a pretty simple factor to deal with, and the side effects for me have been surprisingly nil.

Good luck!

 

[Lily]

Welcome to the site, Jeri We fly too Send me a PM if you would like to chat planes

Regarding flying in many small planes, for those who might not be aware, you must pack very light, but you must also be prepared for anything, even for a daytrip, like a sudden storm or fog preventing you returning to your home airport. I always toss in one small (very light) overnight bag of the most basic essentials, including my prescriptions. Being prepared is essential.

And Jeri, in your research, don't overlook reading a sticky by Tobagotwo, somewhere toward the top of the Valve Selection forum; very informative information there.

Best wishes with your decision; I read what I thought were some nice responses to your very reasonable inquiries

 

[olefin]

I too, don't get your thing about "royal pain".
Talk about pain, complications from heart surgery could well be called that. Not taking warfarin.

I was almost your age, healthy and very active. Only problem for 10 years was a noisy valve that wasn't causing any symptoms. Back then tissue valves had a life of about 10 years. I was one of the few that didn't fear or dread valve surgery. But I didn't want another surgery in my life time if it could be prevented. My doctors were concerned about me having a history of bleeding duodenal ulcer but still recommended a mechanical. Wife had taken warfarin years early due to blood clots so I was familiar with warfarin.
After I had valve surgery followed with complications I said I'd never go through that again. But that's been years ago and don't feel that way today.

Today's tissue valves have a better track record but if I had it to do over I'd go mechanical.

Good luck with which ever valve you choose.

 

[dick0236]

Welcome Jeri, you will find this forum very informative and supportive. In the years I have been on warfarin, I have selfom had it interfere with my activities.....and I have always been active. I think I would be more concerned about having another surgery in twenty years or so, when I was in my late 70s.

I know of a number of people of people, in my community of patio homes, on warfarin. Most are on the drug because of Afib...most recently, my next door neighbor with his brand new pacemaker. Of the six, that I know of, four are on it for Afib w/pacemaker, one for mechanical valve w/pacemaker and one (me) for mechanical valve only...so far.

Warfarin is NOT that big of a deal and, in my opinion, allowing it to be "the tail that wags the dog" is giving it WAY TOO MUCH IMPORTANCE. Educate yourself and make your best decision. With either valve, the surgery will make your life more pleasant.

 

[Mentu]

Jeri, as you know by now, this is a question over which many of us have expended a lot of energy. There is, of course, no one, even including our surgeons, who can say with certainty that one particular valve modle is the "best". Choosing a valve type is always a compromise. The good news is that both tissue and mechanical valves will serve you well for years to come. The most important part of this process, however, is your recovery. If you spend as much energy planning your recovery as choosing a valve, you will be well on your way. The dedication with which you engage in your own recovery will make the most difference in how you feel next year at this time. You will find a lot of information in the reference section of VR and the stickies but when you have more questions, please ask them. Take care.

Larry

 

[tobagotwo]

Some thoughts...

I had my first AVR when I was 52. At that time, I chose a tissue valve. I had the misfortune to get a Monday morning valve, off-spec almost from the start, and it lasted me only five years. A year and a half ago, I had a new one (different brand, but again tissue) put in, and this one seems to be doing fine. The error rate is very low for tissue valves, and even lower for mechanical valves, but you realize it has to exist in the real world.

Anyway, if this one lasts me 20 years, I'll get another tissue valve, unless at that time I have to take anticoagulants for something else.

My belief is that if you get a tissue valve at your age, you will likely have to have it replaced sometime later in your lifetime, most likely in your 70s. It's possible that the replacement would be percutaneous (which is available to some patients already), rather than another open-heart surgery, but the medical treatment standards haven't been drawn up for that yet.

The statistics are that the risks of coumadin usage and the risks of reoperation seem to cancel each other out, and that there is no advantage in longevity shown for either valve type. Mostly, it's whether you like your risk in small, daily doses, or in bigger, surgical chunks, spaced further apart. There are some inconveniences to warfarin use, some limitations, and some concerns with the ACT (anticoagulation therapy) education of some medical and dental professionals. There is knowledge of the likelihood of eventual repalacement for those who choose tissue.

There is even a tradeoff of traits for the two valve types. People with mechanical valves can get pannus (scar tissue) growth that blocks their valves or blood clots under them, and then require reoperation. Tissue valve owners can wind up having other issues that require them to take Coumadin anyway.

Improved surgery results in recent years and self-monitoring for warfarin INR levels have made both options safer. It remains to be seen what the balance of safety will be when these two improvements have been in the mix a while. However, the current trend is that most aortic valve replacements for people in their 50s and older are being done with tissue valves.

You're at an awkward age, where there is little advantage in either direction.

Best wishes,

 

[Jeri]

Thank you all for your posts. I really appreciate the time and thought that everyone of you put in this for me. I now have a little more insight and alot of thinking to do. I have already changed my mind three times....when I first learned that this was necessary, I thought mechanical because I didn't want to do this again, then I remembered my Mom on Coumadin and how she had watch everything she ate...specifically greens ( I love them). I know you can still eat them but it has to be the same everyday. I like an occasional glass of wine and I hear that is out. And then the issue about bleeding, OK so then I said it needs to be tissue because hopefully I won't need Coumadin but it is possible I still will need for a-fib. I've been told about 2 years ago I was in afib. But another doctor had another opinion about that. She called it SVT with PVCs. I agree that there are advantages and disadvantages with each one. I will continue to read and learn as much as possible so I can make the best decision for me. I asked my GP who I respect very much and he is a little younger than me. He said he would choose a tissue valve because of the Coumadin. Next week I see my cardiologist, so I will get her opinion. I won't see my surgeon until February. We are tentatively planning my surgery for March since my TAA was only 3.8cm. I chose March because my husband and I are planning a vacation to Key West before I learned of all of this. Doc said I should go, thank God!!! So again, thank you all so much. Your experiences were very helpful for me and I do appreciate your sharing them with me and I love this forum.

Jeri

 

[tobagotwo]

The patient can have much more control with warfarin use than they used to even a few years ago.

I don't use Coumadin myself, but the notion that you can't have a glass of wine when you want to on Coumadin is overblown. You probably shouldn't quaff a half-case of it in an afternoon, but a glass isn't going to lead to a stroke. As far as the greens, warfarin users do best when they dose the diet, rather than diet for the dose. You should eat greens, if that's what you like, and then manage your dosage to keep your INR within range. After a while, you'll know what is needed to correct when you eat something that is a ways out of tune with your normal intake. Take a look through the anticoagulation forum, and you'll find that many here are very successful with it.

A good number of Coumadin Clinic professionals appear to manage their patients to their own convenience, rather than for the patients' quality of life, and have been known to order needless restrictions to their patients' eating habits. If you were to go mechanical, you should consider self-monitoring and managing it on your own, as many people here do.

Best wishes,

 

[neil]

hi jeri......remember its your choice whichever you choose,both are better than what you got,i choose tissue at 52 because i didnt want to be on anti coags, a lot seem to get on great with them but for me if there was no problem at all with them we wouldnt be on here discussing it,we would all have mechs,both my cardio and doc said there would choose tissue,so i listened to the experts,saying that i will need another op in the future which some people just dont want,last word for you jeri, BOTH are better than none at all, which ever you go with am sure you will be just fine

 

[dtread]

The mechanical vs tissue argument has been going on as long as I've been on this forum, and before that. I'm thinking that there is probably one thing that both sides could agree on. That is that for an elderly person that is not already on Coumadin a tissue valve is probably a better alternative, as long as they would not be expected to outlive the limited lifespan of a tissue valve. So, the thing that I propose that could be agreed upon by the VR.com community is that a tissue valve is preferred when the patient would not be expected to outlive the valve (which would likely require a reoperation), and is not on Coumadin for some other reason. Anybody disagree?

 

[ottagal]

The mechanical vs tissue argument has been going on as long as I've been on this forum, and before that. I'm thinking that there is probably one thing that both sides could agree on. That is that for an elderly person that is not already on Coumadin a tissue valve is probably a better alternative, as long as they would not be expected to outlive the limited lifespan of a tissue valve. So, the thing that I propose that could be agreed upon by the VR.com community is that a tissue valve is preferred when the patient would not be expected to outlive the valve (which would likely require a reoperation), and is not on Coumadin for some other reason. Anybody disagree?

Good points, Dtread. I would also add a tissue may be warranted in a woman wanting to get pregnant and for individuals who have a medical issue that would contraindicate the use of Coumadin. There are most certainly other reasons for valve choice that I have overlooked.

 

[Greg a]

Jeri, I had a MVR (ring added) so I didn't have to choose but I did want to welcome you to our family ...Hank has created a family of OHSers (open heart surgery) number about 1,500 so there is a wealth of knowledge and support as you travel this road

 

[Jkm7]

When you speak with your surgeon, you may wish to ask his/her opinion regarding percutaneous valve replacement and the likelihood of your needing a second valve replacement at some point if you select a tissue valve.

I have tissue valve (coming up to three years) and am so happy that is the choice I made. My surgeon, at the time of my replacement, said then he was sure percutaneous replacements would become very common and it seems he is probably right as they are now being done for more patients in more heart centers.

I did not want to risk having a loudly ticking mechanical valve and wanted to try to avoid coumadin. My surgeon told me right from the start, he has his tissue valve patients take coumadin for three months post op until tissue grows over the valve smoothing it. It was not possible to know in advance, my metabolism required me to take 90+ mg per week and my dose was still rising when I was permitted to stop as I never actually reached desired therapeutic range. When I saw my surgeon and he learned the high dosage I was taking, he told me to stop at 2 1/2 months. It made me very nervous to take so much though, of course, I understand the correct dose for each of us is that which keeps us in our desired range. Still, that's a lot of coumadin to swallow everyday and I breathe a sigh of relief I opted for tissue valve.

My surgeon also told me there is no predicting how loud any mechanical valve may sound in any body. Big barrel chested men may have very loud valve while tiny, petite little ladies may have very quiet valve. I can't stand the sound of a ticking clock so, again, I did not want to take the risk.

Whichever you choose will be the right one for you. There is no wrong choice except to not make a choice and not have the surgery.
Let us know how you are doing and what choices you make.
All best wishes.

(We love Key West. Hope you have a great vacation there.)

 

[john79t]

At 58 it is a tough decision. I was 61 and got a bovine valve. I hope to get 20 years out of it. If it is much shorter I will get mech. next time. I had no real complications from surgery and got a new hip in Jan. It has been 18 months and all my check ups have been perfect. I did have a fear of warfin it killed my mom. However, I now know that it was the mismanagement of warfin (really no management) that killed my mom. After being on this site I have much less fear of warfin. Whatever you choose be happy and live life to the max.

 

[Lionheart]

The mechanical vs tissue argument has been going on as long as I've been on this forum, and before that. I'm thinking that there is probably one thing that both sides could agree on. That is that for an elderly person that is not already on Coumadin a tissue valve is probably a better alternative, as long as they would not be expected to outlive the limited lifespan of a tissue valve. So, the thing that I propose that could be agreed upon by the VR.com community is that a tissue valve is preferred when the patient would not be expected to outlive the valve (which would likely require a reoperation), and is not on Coumadin for some other reason. Anybody disagree?

Hi dtread,
Good points. We seem to revisit the valve selection discussion frequently because the choice is not always clear. I agree with the one example that you gave why a person would chose a tissue valve; that is, when they are at an old enough age that their natural lifespan will not be longer than the expected lifespan of the installed tissue valve.

But the list of reasons that a person would select a tissue valve is much longer than that one. For example a younger person (<65 years old) would select or would be recommended to have a tissue valve when:

1. They have a blood disorder that would be exacerbated with coumadin.
2. They have other diseases that are contraindications to anti-coagulation therapy.
3. They have lifestyle considerations. This one is broad, but here is an extreme example. Think about a drug-abuser who would be unlikely to take their daily ACT dose. Any surgeon who would put a mechanical valve in a person that is known to be non-compliant would be remiss. Life-style considerations are the most misunderstood and toughest to get a handle on. Other lifestyle considerations could include a host of reasons real or imagined for why a person would chose to select one valve or want to avoid another.

The above are reasons listed in the medical guidelines for valve selection. See page 54 in the ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease: Executive Summary
http://www.americanheart.org/downloadable/heart/1152523511774VHDexecsummary.pdf

I selected a tissue valve based on Lifestyle, but I would never suggest that it is what other people should chose.

For most people there is no wrong choice and ultimately the "right choice" is only known once the fat lady sings so to speak.

I think the selection process comes down to the trade off of what risks you are willing to take with each choice. The most important thing and the most difficult to ascertain is exactly what risks each avenue holds for us. Seldom do we get to the heart of that matter simply because it is not black and white.

Best,
John