Valve Type of second surgery

[JCDavis81]

Have any of you choosen a tissue valve for a second surgery? I'll be having my second AVR at the end of november and the Docs are all recommending mechanical because the MM rate for 3rd surgeries is so much higher than for 2nd ones.

Apparently the morbibity rate for a third surgery can be as high as 10 percent -- for 1st and second surgeries it's only 1-2 percent.

Anyone else hear these stats before?

 

[Nancy]

We heard 15% for Joe's third. He is now almost inoperable due to so much scar tissue and adhesions and has developed constrictive/restrictive heart disease due to scar tissue.

His cardiologist has told us that the indications for a fourth surgery would have to be extremely serious, and Joe was quoted a mortality/morbidity rate as high as 80% to the bad for a fourth surgery.

So I believe that you should think very long and hard about trying to eliminate as many surgeries as you can. There are no guarantees, of course, with either valve, but a tissue valve guarantees another operation at some time in the future.

 

[Karlynn]

JC What is your age now? I see your Ross was in '97.

 

[JCDavis81]

24

24

Hey Karlynn,

Yeah that might be helpful wouldn't it. I'm 24 right now -- had the ross when I was 16.

Joe

 

[Granbonny]

Welcome, Joe

Welcome, Joe

Really hard for a choice at such a young age.. If you go for a tissue..remember..you will be in your early 30's..before next surgery....Will you be married with young children ect..have Insurance, ect...Have a job where they will not let you go, ect.....takes a long time to recover from open-heart surgery..We have many members who choose the tissue at your age..to keep doing the things that ..one should NOT do on coumadin..Skydiving, mountain biking, snow skiing, ect. ect....but other than these sports, we coumadin takers do all the things we did before surgery.. just take 1 pill a day...and watch out for head injuries..like I do when I attend my Grandson's ballgames. those kids can really hit a ball. In 3 plus.years on coumadin..never had a problem with bleeding or bruises.....If you decide on a mech valve..get a home testing machine....so you will be free from coumadin clinics. Bonnie

 

[jkn2kids]

JC-did you decide which hospital you are going to have your surgery? Hopkins or Duke? Dr.Cameron at Hopkins has done a tremendous amount of these surgeries in his 21 years at Hopkins.

 

[Ross]

At your age, to me, this is a no brainer. Mechanical. Even then there is no guarantees that a future surgery isn't in line, but it's likely to last your life time. No more surgeries!

 

[Curtsmum]

We have been told our son needs mechcanical, all thow i dont understand why yet,as they may need to do it again with a adult size one. Best of luck, with your decition, hope it goes well.

 

[JCDavis81]

Jaggers

Jaggers

Jnk -- yep, I decided to go with Jaggers. I spoke with Dr. Cameron this weekend and while he was great, he recommended Jaggers very highly and has actually done fewer of this type of surgery (6) than Jaggers (6-8) [surgery is repair - graft - of a dialated aorta and attempted repair of a post-ross aortic valve]. This way I get to stay in durham for my recovery, sleep in my own bed, etc.

Ross - I think you're right, mechanical is the way I'm leaning. I had been going back and forth for a couple of months but when Cameron explained how much more difficult a third surgery is than a second one, that just about convinced me. While I'm beginning to become educated about coumadin - the thought of being on it for life still scares me a little bit.

In the best of all worlds, he'll be able to save the valve. And I won't need a mechanical one!

We'll see.

 

[Ross]

Do not let the great Coumadin monsters scare you! I've been on it for 4 years now and really, it's no worse then taking any other drug. The drawbacks are frequent testing, bridging therapy for other surgical procedures and common sense when it comes to protecting your head. There are a whole lot of people out there telling folks like you, that you cannot do this or that, you can't eat green vegetables, you have to watch your diet like a hawk, you'll bleed to death if you cut yourself with a razor, and on and on. NONE of it is true!!!!

Yes if the valve can be saved that would be good, but I'm not a stats player, so I'm in favor of anything that is going to put a stop to more surgeries. People like the stats thing, but no one really knows what's going to happen when they go in, it's just a roll of the dice.

 

[JCDavis81]

Ross --

You know, I don't think its the thought of coumadin that scares me. I already take Zestril once a day so taking coumadin will just be like trading one pill for another.

I think its the REASON I have to take coumadin that scares me. The thought of a stroke is just horrifying. I know that if I take the meds everyday the odds of having a stroke are close to zero, but the thought of what might happen if I screw it up for a day or two (doubt that would happen but who knows) is what scares me.

 

[Ross]

Ross --

You know, I don't think its the thought of coumadin that scares me. I already take Zestril once a day so taking coumadin will just be like trading one pill for another.

I think its the REASON I have to take coumadin that scares me. The thought of a stroke is just horrifying. I know that if I take the meds everyday the odds of having a stroke are close to zero, but the thought of what might happen if I screw it up for a day or two (doubt that would happen but who knows) is what scares me.

One more thought to toss at you to help your thinking some. I don't have the exact numbers, but reops often have Afib as a result and then you'd be on Coumadin anyhow. Not saying it will happen, only that it could. I can appreciate your thinking, but believe me, when you know your life is in your own hands, you don't forget it.

If you havent' done so already, go over to Al Lodwicks site and educate yourself with all the information you can digest.

www.warfarinfo.com

 

[Karlynn]

Been on Coumadin for 14 years now. Do I wish I didn't have to take it. You bet! Am I glad it was an available choice in order to avoid additional surgeries? You bet! These last 14 surgery free years have been terrific.

I think Granbon's post had a lot of good things for you to think about.

 

[tobagotwo]

At your age, with your surgeries, I certainly argree that a mechanical makes far more sense, and offers you a much better future. Coumadin may be a bother, but you will burn through tissue valves at your age, and you will wind up with way too many surgeries.

Your heart has scar tissue enough, after the Ross and the other OHS.

Get one of the top, new-breed mechanicals, take a break from the scalpel, and go out and live your life. You'll do okay with the Coumadin. And anecdotal evidence says there's more "give" in INRs than most here tend to advertise. People get major fluctuations all the time without dire results. Just try to get it level and keep up with testing - home testing, that is. It will become a routine part of your life, like brushing your teeth.

The point of figuring a mortality rate is how it applies to you. The phrase "as high as" invalidates whatever follows it, so it's a pretty meaningless percentage. It's akin to saying, "savings of up to 50%!" However, Joe isn't a prime example of risk percentages either, as he has had other health issues and major surgeries as well, that certainly affect his odds.

And dying isn't the only negative outcome you can have from a surgery. You could have permanent arrhythmias, pericardial constriction, stroke, or other issues.

Best wishes,

 

[Lynlw]

My only other question would be if they think down the line they will have to replace your pulm valve from the Ross, My son Justin is 17 and just got a tissue valve in May. it was his 4th open heart But since he will definately more heart surgeries, all the docs recomended bovine. He did have alot of scarring before this 4th surgery, but since the surgeon knew before hand his pulm artery was fused to his sternum, he knew how to open his chest.Justin was glad to have tissue for a few reasons, Lyn

 

[JCDavis81]

And dying isn't the only negative outcome you can have from a surgery. You could have permanent arrhythmias, pericardial constriction, stroke, or other issues.

Best wishes,

Well thanks a nice though to have in my head before going to sleep tonight!

 

[tobagotwo]

Oh, wow.

I apologize. We talk about it so much, and get steeped in it, and sometimes I don't realize how callous a remark can sound.

We all know there are possibilities, but we don't usually talk about them much, because it's hard enough to swallow the original bitter pill, without adding a lot of other what-ifs onto it. We have all contemplated these things while lying sleepless in the middle of the night. I am truly sorry if I have caused you to have one of those interminable, wee hours sessions with your imagination and the moon's shadow dancing on the ceiling.

Lyn does make a good point also, if there are reasons you will require surgery again. I still believe that a mechanical makes the most sense if your surgeon and cardiologist feel that you will be available to avoid further surgery for other reasons.

Best wishes,

 

[JCDavis81]

bob,

no worries -- I've thought of all of these things before and was able to sleep well last night. It's amazing how one to get to the point where they can truly "accept the things they cannot change." I know what the risks are and I know there is nothing I can do about them. I also think it helps to have gone though this before. Its the fear of the unknown that can really get you, and much of this isn't unknown to me anymore. I do appreciate your, and everyone else's, input on this.

I think you're right. A mech is the way to go and that is really the final thing that I have to "accept".

Best,
Joe

 

[Gemma]

Hi Joe,

It sounds like you've pretty much decided on which valve to go for - and I have to say if I was in your position I'd also go for a mechanical valve. My boyfriend Jim's had his for nearly 2 years, and the best thing we did to make sure he remembers his warfarin every day is buy a weekly pill box. That way you can have your week's pills lined up ready to take, kept somewhere convenient, say next to your toothbrush, and just check it every night to make sure you've taken that day's dose. And of course, if you have a control freak of a S.O. you can also get them to double check for you .

And Bonnie, I think anyone having an accident while skydiving would be in big trouble - regardless of being on warfarin or not . But Jim still mountain bikes like a crazy man - Sunday afternoon he took me out in the forest, got to the top of a hill and went shooting off down it at breakneck speed. When I got to the bottom he was sitting there patiently waiting for me. There was me, going along all sedate worried I was going to fall off. Meanwhile, Jim tells me it's a boring place to ride and we need to find somewhere "better" next time .

 

[Curtsmum]

Ross --

You know, I don't think its the thought of coumadin that scares me. I already take Zestril once a day so taking coumadin will just be like trading one pill for another.

I think its the REASON I have to take coumadin that scares me. The thought of a stroke is just horrifying. I know that if I take the meds everyday the odds of having a stroke are close to zero, but the thought of what might happen if I screw it up for a day or two (doubt that would happen but who knows) is what scares me.

Thats just how i feel being responible for somebody elses life but as Ross said when its in your own hands, im sure it wont happen, its just a worry.