mechanical? tissue? cleveland clinic avr April 29th (2nd ohr surgery) but now w kids

[starburstcoral]

I'm wife to Eric super awesome husband age 43. 10 years ago my husband had his valve (bicuspid) repaired at CC (using gore-tex i think). Then, 2 years ago he was finishing the last 100 yards at a triathalon when he collapsed, went into V-fib. Luckily for him the medics were about 10 feet away and restarted his heart w/ a defibrillator. Now he has a defibrillator/pacemaker. He has been doing fine however last week during a routine check up, his cardiologist said that his aortic valve is now .8, & he is going to most likely need surgery soon. He has been a little tired, but we thought that is because we have a 5 month old who gets up at 4am,5:30 am, etc, and 3 year old. He has another test tomorrow to look again at his heart using a scope/echo, then we will confer w/ his cardio at cc.

My husband now wonders if he should have gotten a mechanical valve vs. the repair- and going forward which type of valve to choose. Taking coumadin for the rest of his life scares him, but the thought of doing another surgery in another 10 years isn't great either. He plans to do the surgery again at the Cleveland Clinic. If you have any suggestions, questions, ideas on what type of valve we should look at and why your suggestions and comments would be greatly appreciated. How do you decide what kind of valve is best for you? His cardio here in NC wanted him to have a mechanical valve back 10 years ago, but his CC cardio suggested the repair, so he went w/ that.
We were planning to leave for a vacation to Australia in two weeks. Not sure if we should go or wait, I guess the dr's will also give us their advice. Needless to say I am quite worried, concerned and scared that Eric will have to face this again and want to be as great of a support as I can be. Thanks for your help.

 

[kfay]

Welcome to VR from another Charlottean. There is no sense in you guys wondering "what if" about his surgery 10 years ago. He made the best choice he could with the information he had at that time. It bought him 10 years free from having to take additional drugs. At his age, I would most certainly think all of his Dr's are going to recommend a mechanical valve. I am just a couple of years older than him and have a tissue valve but only because it is on the right side of my heart, so mechanicals aren't typically the valve of choice.

I don't have to take coumadin, but have had a couple of short runs on it after surgery and other heart related procedures, and I didn't have any problems with it while I was on it. I think most long term users on here are going to tell you the same.

Good luck to you and your husband. Luckily, you found this site before surgery #2. It is a great resource.

Kim

 

[Lisa in Katy]

I'm sure the experts at Cleveland Clinic will be able to answer your questions as to outcomes, possible future surgeries, etc. I remember being told about 18 years ago that if I could get a repair, that would be my best bet because it would probably last forever and I wouldn't have to take Coumadin. When I had my surgery 11 years ago at age 36, I was disappointed that a repair wasn't an option and I ended up with a mechanical and Coumadin. Now I guess I should be grateful, because like older tissue valves, repairs only seem to be lasting 10-15 years, and I don't want another surgery anytime soon! However, at the time, they did what they thought was best, so "throw away the rearview mirror because looking behind you doesn't change what's in front of you". (I heard that recently and thought it was good advice, so I'm using it now!) I can tell you that after 11 years of experience, Coumadin is not near as bad as people fear. So whatever they decide to do, it will be good.

 

[AgilityDog]

At his age I'd go mechanical. I chose that hands down at age 47. But I'd go with the On-x - which you will hear much about as you do your research. CC is a great place.

I second Lisa's recommendation: don't look back. Waste of time. It would have been nice if the repair had lasted longer, but it didn't.

And coumadin is not so scary, especially if you have a doctor who will help you self-test, and even self-manage.

As for a trip to Australia before surgery, I think I'd ask my doctor about that. It's not the boonedocks or anything, it's just far away from your own doctors and your own medical insurance.

 

[dick0236]

If it were me, at 43, and based on my own experience, I would choose a mechanical valve unless there were special circumstances. Mechanical valves have a track record of lasting a long time....in fact, they don't really know how long they CAN last. I know this for fact. Problems with mechanical valves are unually due to other health issues and not related to the valve "wearing out" Anti-coagulation therapy is a learning experience but should not be feared, only understoord.....and it has not interferred with my life or activities.

 

[tobagotwo]

At 43, if he doesn't want a reop in ten years or so, he should go mechanical. I would go for the On-X, which has the best clot profile, and even has some possibility of being able to use aspirin-only ACT, depending on the outcome of current trials. (Although that's not a given at his point.)

It's a tough spot to be in.

Best wishes,

 

[hensylee]

just want to welcome you to vr.com, the best place to be while in your shoes. so much useful and important information to be found here and you two being veterans will understand it all. Glad to have you among us. Blessins..........

 

[netmiff]

Hi there, and welcome!

Yep, as others have said, the best choice was made 10 years ago for the situation at that time; the same can be said with the one you are facing now!

Learn as much as you can about the different types of valves; coumadin is not to be feared (read the active lifestyles and the anti-coag sections here); in fact, some people with tissue vavles end up on it anyway because of a-fib. There are no guarantees in this business; no guarantee that if you choose tissue you will never be on coumadin; no guarantee that if you choose mechanical you will never need a re-do (they sometimes get growth on them and other reasons to be replaced). There are best-chance scenarios, and whatever decision you two make will be the right one for you both at this time.

 

[Karlynn]

Welcome! With one surgery already chalked up to him, I think I'd go mechanical too, and give a lot of consideration to the On-X. But I have a St. Jude clicking in me for almost 18 years now.

Have your husband read and view the stickies at the top of the Anticoagulation forum. This will hopefully start to calm his fears on Coumadin.

As far as the Australia trip - if you don't take a big penalty hit for postponing. I'd postpone it. I'm sure the trip is not cheap and, if it were me, I'd want to go when I'm feeling better. But that's just me - maybe going would be just the ticket to get his mind off his troubles. But absolutely let the doctors weigh in on whether they think he should go.

 

[RI Mom]

Hello and welcome,

I can't help with your decision but I just wanted to let you know that the mechanical would offer longevity and is the reason that my child got one at age 4. He takes coumadin and even with the type of jumping and bumping a little boy does, we have not had any major problems with it. I do wish you all the best with your decision.

 

[Roger Frank]

On-X recipient here at 55 and all is well. In fact, my one year is coming up on the 18th of August!

I'm more convinced everyday On-X was the correct decision due to the longevity aspect. We don't know what Government health care will ultimately morph into but I seriously doubt anyone will be "graciously allowed" more then one valve per lifetime...if at all depending on your age.

 

[ctyguy]

Im 44, had my AVR at C.C. at age 42. I went mechanical within On-X and couldn't be happier. The biggest problem I have with Coumadin is remembering to take em. I had a pill box right after surgery because I was taking 3 or 4 things, now Im on the Coumadin alone. As far as cuts and things go tell your hubby not to worry. I use a blade to shave with and have my share of nicks and cuts since surgery without issues. I really can't tell if it takes me longer to clot or not. And if I had a big ol cut I'd be going to the hospital for stitches regardless of Coumadin or not.

Prior to my AVR I couldn't go 2/10 of a mile without SOB and chest pain. I just ran a 1/2 marathon, play full-court basketball, raquetball with no issues. I get tired of course but Im no different that the rest of the guys my age, actually at this point Im in better shape and have more wind than the majority of them. So tell hubby that once his AVR is taken care of he can get back to running in triathlons and I'm gonna bet his performance actually gets better !

As far as vacation in two weeks, I'd let the docs make that call but I know personally I think Id reschedule the vacation until Im healed and can enjoy it without the stress of surgery looming.

Best of luck to you both.

 

[ALCapshaw2]

You can learn all about the On-X Valves and how they compare with the others on their websites www.heartvalvechoice.com and www.onxvalves.com

If you call the company (888-339-8000) they will send you an Information Package with LOTS of data and some double sided sheets explaining each of their technological improvements and how they improve performance.

Do a Search (see the blue line at the top of the page) for keyword "Bokros" you will find links to Jack Bokros, Ph.D. who has been instrumental in the design of the 4 Major BiLeaflet Mechanical Valves in the USA (St. Jude, Carbomedics, ATS, and On-X). On-X is his "Latest and Greatest" Design after 30 years "in the biz". Ask On-X to send you the Profile Sheet for Jack Bokros which details his biography and history in designing Heart Valves.

As for Coumadin, read the "sticky's" at the top of the Thread Listing under the Anti-Coagulation Forum and browse through that Forum for LOTS of discussion on living with and on anticoagulation. Al Lodwick's website www.warfarinfo.com is another Great Source of Information. He sells a Dosing Guide for $5 from his website. That's the Best $5 you will spend on anticoagulation issues!

'AL Capshaw'

 

[starburstcoral]

mechanical? tissue? cleveland clinic avr April 29th (2nd ohr surgery) but now w kids

My husband 44 ys old surgery is scheduled for valve replacement surgery April 29th at the Cleveland Clinic. His first surgery was 10 years ago to repair a bicuspid valve which went well, then during a triathalon 2 years ago his heart stopped (v-fib) and he recovered and now has a defibrillator. Now his aortic valve is calcified and has had different measurements avg about .7cm. His gradient is 69 at rest 100 after 10 min on treadmill. This month he started to show signs of more tiredness. His father died at 69 from a hemorragic stroke, which is why my husband is leaning towards a non mechanical valve for fear of being on coumadin. I have so many questions but with 2 kids under 4 it is a busy time for us. So if you have any thoughts about his situation I would much appreciate it.
-he is active and swims in the ocean often
-what about coumadin and fathers history of hemorragic stroke?
-what kind of non mechanical lasts longest?
-how bad is surgery the 2nd time around?
-he is allergic to mold, chemicals such as formeldhyde, things used in building, perfumes, I know that they use chemicals to preserve valves, should he be concerned? When he is around these chemicals his throat gets scratchy and his chest tightens....

Your advice is much appreciated,
Mary, Charlotte NC

 

[mainframe]

A tissue valve at age 44 means a 3rd re-op at some point. I had a tissue value at 45 and it lasted only 7 years. Some folks find the 2nd surgery easier than the first or at least no more difficult. Not me. I was in the hospital 4 days the first surgery and for a couple of months the 2nd surgery.

Hopefully whichever valve you and your husband choose hopefully it will last a long time and his sugery and recovery will go well.

 

[echoguy]

Hey starburstcoral. I had AVR at Cleveland Clinic three weeks ago. I am a 50 yo ultramarathon runner who opted for a tissue valve. I did not have any significant complications, particularly no a-fib, so I was never placed on coumadin and have been on 81mg of ASA only. The surgeons at Cleveland expect that valve replacement in 10-12 years will likely be done via catheter, although no promises.

I would pick tissue valve again if given the choice.

(I had responded to a thread on the "pre-surgery" forum that had some other questions that mysteriously disappeared, if you have any quesions specifically about Cleveland, please feel free to PM me)

Happy trails.

 

[Philip B]

Hindsight

Hindsight

I'm sure you guys realize that looking ahead to what needs to be done is more worthwhile than looking back at what you might think should have been done. It sounds like he got some mileage out of the repair.

Many of us frequently respond to questions regarding valve choice by stating that there is no bad choice when valve replacement becomes necessary. There are certainly pros and cons to both mechanical and tissue.

The topic of coumadin use is a regular "hot topic" here. Speaking from personal experience, I've not yet found anything to fear with the drug. I still pursue a very active lifestyle. Despite encountering several serious injuries, I've never bled out. Still, I understand why many people find the prospect of needing to take coumadin for the rest of their lives such a major worry. I think coumadin use is something one develops more comfort with as he/she gets more experience with it.

The only alterations to my lifestyle that have occurred since I began taking coumadin in March 2007 have been a weekly home test to determine my INR and adjustments in my coumadin dosage (the test takes less than five minutes), and remembering to take a coumadin pill or two every day. There's not much to fear here.

-Philip

 

[ALCapshaw2]

The Bovine Pericardial Tissue Valve has the longest proven track record for durability of the Tissue Valve Options.
It is on the "preferred list" at Cleveland Clinic.

As an Engineer, I am highly impressed by the technological advancements of the On-X Mechanical Valve.
The most prolific user of the On-X Valves at Cleveland Clinic is Dr. Pettersson.

Obviously it would be good for his Surgeon to evaluate his potential hereditary stroke risk and then make his recommendation on valve type.

 

[ks1490]

Al, I appreciated your reply to this post. I am still wavering on valve choice, I am still 50/50 on the decision. Following on from your reply to this post, could you also refer me to some websites or papers from an independent source that would also give the pros/cons of tissue valves as well? Many thanks in advance.

 

[Cooker]

The choice is yours ... I personally would opt for the choice that gave me the best chance of not having to have another surgery ... regardless, some people here are passionate about a particular valve, remember they are not doctors/surgeons ... make your choice with your research and the advice of your doctors ... good luck and best wishes.