valve questions

[Karlynn]

One thing to consider is that we've had people join who tell us their doctor recommended tissue valve because, if it were them, they would never go on Coumadin if at all possible. What this tells me is that there are doctors out there that (and we know this through personal experience) that do not know of what they speak. My recommendation to anyone who has a doctor that says that, needs to find another doctor, regardless of whether you go tissue or mechanical. That statement makes me believe that the doctor might not be up to speed on other important information since they quite obviously aren't up to speed on warfarin. I would not want to get a tissue valve under that doctor's care, and then end up on warfarin due to a-fib.

Just a warning that not all doctors are good doctors and the information we provide here helps people sort them out.

 

[Nancy]

Never, never have a closed mind on what is posted here. You may not agree with it and may not be persuaded by it, and it may even make you angry, but here, you have the opportunity to view posts from many, many people who have long standing experience with not only the first operation, but subsequent operations.

Those who have travelled down difficult roads feel compelled to express what they have gone through in the hopes that another will at least pause, do more research, learn every aspect of this surgery as best they can. Learn about Coumadin so you will understand what really happens with it, when someone comes here and tells everyone that it's scary to be on Coumadin. It's not. Every valve has drawbacks and strong points.

Don't plan on what might come along in the future. None of us can see into the future. There may or may not be a new method for surgery, there may or may not be something to replace Coumadin, there may or may not be a mechanical valve that doesn't require anticoagulation. Your tissue valve may last 20 years, and it might last 2. Your mechaincal valve could last your lifetime, and it could also spring a leak, have a recall, or you could even develop endocarditis and have to have it replaced. You can only count on what's available right now, today, the rest is for a crystal ball.

This is a surgery that is to fix the most important organ in your body. You should read everything about it. Be the most informed patient your cardiologist has. Be able to debate with him/her.

One thing I know for sure, having taken care of my very operated on husband, reoperations are not as easy as the first one and they DO become more difficult with each subsequent one. Scar tissue is a very big issue.

Another thing I know is that Coumadin is not scary. It's just another medication that has to be monitored carefully.

And by the way, this discussion pales by comparison to one that went on several years ago re: mechanical versus tissue. It was huge.

Check it out:

http://valvereplacement.com/forums/showthread.php?t=304&page=1&pp=30&highlight=making+the+choice

 

[tobagotwo]

Some notations...

From the first study (which has been posted before):

Follow-up was 95% complete. Operative mortality was 4% with AVR and 9% with MVR. Total follow-up was 32,190 patient-years (range, 1 month to 24.8 years; average, 7 +/- 5 years).

The results were actually mixed among patients who had had the valve for between one month and 24.8 years. (Despite the title, no one in the study had actually had one for 25 years.) The average length of time that the respondents had owned the valve was 7 years. So it's not really a long-term study. The results were not broken down into five, ten or twenty-year statistics, so the study is not greatly useful for determining efficacy over time.

From the second study:

RESULTS: From October 1977 through October 1997, 271 patients less than 50 years of age had isolated aortic valve replacement. Follow-up was 1957 patient years.

Again the results are from a mixed field as far as length of valve ownership, with a mean of only 7.2 years of valve ownership. These results are also not broken into length of ownership, which would give them more value.

Here are ten- and twenty- year mechanical results from a study that did break them down by length-of-service:

Source: J Thorac Cardiovasc Surg. 2001 Aug;122(2):257-69; Twenty-year experience with the St Jude Medical mechanical valve prosthesis. Ikonomidis JS, Kratz JM, Crumbley AJ 3rd, Stroud MR, Bradley SM, Sade RM, Crawford FA Jr. from:
http://www.ncbi.nlm.nih.gov/entrez/...ve&db=pubmed&dopt=Abstract&list_uids=14688722

St. Jude Aortic Valve Events
............................at 10 years?..at 20 years?
Required Reoperation............7%........10%
Thromboembolic Event.........18%.......32%
Bleeding Event.....................23%......34%
Endocarditis in Valve..............6%.......6%
Valve-Related Mortality..........6%......14%
Valve-Related Morbidity........36%......54%

Is the SJM a top-of-the-line valve? Yes, I believe so, although I might choose an On-X or other right now, as the choices have expanded interestingly. Will there be someone who has one for forty years? Probably. Fifty years? Maybe. Hope it's someone on this site. Hope I'm here to congratulate them...

Which valve type is better? Statistically, probably neither in a grand and generic sense.

Practically, though, it depends on a lot of things, including your own assessment of what type of risks concern you most. If you're most concerned about additional operations, the mechanical will give you the least likelihood of resurgery, or at least the fewest number of them (assuming the VR corrects all of the eventually operable problems in your heart). However, if you have other, uncorrected issues, the risk of stroke may complicate a later surgery. If you're most concerned about the influence of Coumadin and stroke risk in your daily life, then tissue valves may offer you a more compatible option (assuming you don't wind up with permanent atrial fibrillation from OHS or from presurgical damage). But not everyone weathers or bounds back from OHS easily, and you won't know how you will fare until you do it. That's a little too late for second-guessing, as you'll already be committed to the next one.

In general, the survival rates are about the same, stroke/bleed risks vs. reoperation risks. Some things can raise your risk. Starting younger, the number of operations you go through can change your risk profile. And who says your heart is the only thing that will require opening your chest someday? Medical procedures that require temporary abstention from warfarin can increase stroke potential. Damage from strokes doesn't show up on survival statistics.

It might be interesting for us to consider developing a risk database that an individual could look into, and attempt to apply to him- or herself. We repeat things a lot, but some things submerge for a while, and don't reappear for months.

Best wishes,

 

[TomS]

Valve statistics

Valve statistics

OK, here is my two cents. I am 48 and scheduled to go in for a mechanical aortic valve in three weeks. Reasons for this decision are as follows:
1. My brother had his aortic valve replaced with a mechanical valve 11 years ago and has acted as if nothing ever happened, even being on Coumadin. He hasn't slowed down one bit, and is extremely active. He is "fixing something" or using a power tool of some sort virtually every weekend. He's been side by side (or ahead of me) laying pavers and building skate ramps and decks. He doesn't believe that Coumadin is any big deal as long as you watch the numbers.
2. The mechanical valve numbers are going back 4 years in the referenced study. That gives me 14 or 24 years of changes in the valve and cardiology to feel better about.
I realize that it's an individual decision, but I personally like what my surgeon and cardiologist are telling me, and what I've seen with the mechanical option.
Tom

 

[geebee]

Hi guys,

Just got home from a soggy (read HOT) working day and decided to chime in. I don't really have a lot to add other than the fact that, having gone through 3 OHS, I don't want any more. I didn't want the second or the third but I wanted to live. The second one almost killed me and, after the third, my surgeon said I would be hard pressed to survive a fourth. Given my recent echo, I am terrified at the thought of another surgery.

Coumadin, as Nancy says, is just another pill. You don't have to change your lifestyle. People bleed if they cut themselves no matter if they are on coumadin or not, we just bleed a little longer. Same with bruises - ours are just a bit larger and darker. Sure bridge therapy is needed for some procedures but it is just a little extra issue. Clots are not a problem if you pay attention to your INR.

The only concern I have about the valve choice debate is that some people, who have never been through more than 1 OHS, are the ones who seem to think it is no big deal. Some who have never been on coumadin, say it is horrible to deal with. I say if you have never ......... maybe you shouldn't talk about such things like you have experience with them.

Now, before everyone jumps on me, I am NOT saying you should not have an opinion on how these choices would affect YOUR life. Obviously your life and your choices are yours and yours alone. I am merely concerned that choices may be made due to listening to someone talk about the Horrors who has no personal experience with coumadin. Or imply that repeat surgeries are no big deal if they have only been through 1 (or maybe none).

And I don't think this thread is heated. I think it has been very civil and I thank everyone for that. I do not see any posts in this thread that point to problems with VR.com. I just think it is important for facts to be kept facts and opinions to be kept opinions.

Just my opinion, of course.

 

[Mary]

The only concern I have about the valve choice debate is that some people, who have never been through more than 1 OHS, are the ones who seem to think it is no big deal. maybe you shouldn't talk about such things like you have experience with them.
.

Gina,
I'm really not trying to start anything here, but I want you to think about my question.

Is it fair to say then, according to your statement, that no one should talk about experiencing repeat OHS unless they've had more than one?

If we follow that logic, then all mechanical valvers with only one OHS under their belt should keep quiet as should all tissue valvers with only one OHS. That would cut down on the number of posts on these threads!

 

[geebee]

Talking about "experiencing" repeat sugeries is different from having an opinion about whether one "wants" one or is facing one. I did not mean that people shouldn't express concerns, thoughts, opinions, etc. All I meant was that folks who have not had repeat surgeries should not indicate it is no big deal when they haven't been through more than one.

I did not mean this to step on anyone's toes. I just felt that new members might get confused over what is experience and what is opinion.

Hope this helps to clear it up. I would hate for anyone to feel I think ideas, opinions and thoughts should not be expressed.

 

[Karlynn]

St. Jude Aortic Valve Events
............................at 10 years?..at 20 years?
Required Reoperation............7%........10%
Thromboembolic Event.........18%.......32%
Bleeding Event.....................23%......34%
Endocarditis in Valve..............6%.......6%
Valve-Related Mortality..........6%......14%
Valve-Related Morbidity........36%......54%

Bob, what is Valve-Related Morbidity?

I didn't look at the link, does it give a mean age for those in the study? What do you think they mean by a "bleeding event"? (If it's major - that sound like a pretty high number)

Do you have a similar study (in your Wizard's Manual ) for a tissue valve that you can post? Particularly with the mortality, morbidity and reoperation numbers. Better yet, are there studies out specifically targeting the younger adult, for either type of valve?

I think this is still staying somewhat civil. I don't like any snyping back and forth - maybe do that via PM. It scares me when the grown-ups argue.

My main interest in posting on this topic now isn't repetative. I think we are hearing more and more people quote the longevity numbers of tissue valves and I just want the young'uns to realize that these numbers are for people a lot older than them. Young hearts wear out tissue valves much faster than older hearts (now that's repetative )

It would be interested to do our own nonscientific study/poll for both our tissue and mech valve recipients (separating the groups of course). What questions should we ask? Anyone interested in collecting the data?

 

[Granbonny]

Motherhen of VR.Com

Motherhen of VR.Com

Told yall 7 hours ago..Time out.. and go watch the shuttle take off...That was so great..Sorry, Hank , you missed it.Knowing you were there last week and it got canceled. Now, I see..that there has been 34 posts since I told yall to do that...34 posts in 7 hours.. On the same subject?..What is the best Valve to choose..... ..For newbies..Do your research..talk to your Cardio.and surgeon...Takes notes, have a 2nd opinion..anything that will help you make YOUR choice....and last..read all of the threads we have posted here on VR.Com..(Coumadin, tissue valves, mech valves, post -op..) and I said..LAST...Great information here from members...but, We are NOT the one who will be doing your surgery. I think we need another time-out from this thread.. I take the name..Motherhen..One of the older members with 3,876 posts.. Nancy, Ross and Hensylee (ann) are still ahead of me. We have seen Members come and go..Some have stayed to help out with Newbies..Others may chime in when there is a Thread that they may have information that will help... Bless them..for I know them all. ..And when I said, I was older member..I meant age 65.. I know of 5 other active members older than me.But, will not name them. Bonnie

 

[Karlynn]

I know of 5 other active members older than me.But, will not name them. Bonnie

Oh please please!!! Spill the beans!

 

[geebee]

Hey guys - we need some loving here. We are all on the same side - right?

The only thing to consider is we really don't know why people disappear, do we? Unless someone contacts all those folks and does a survey, it's only speculation. Therefore there is no dishonestly one way or the other. People facing OHS will be scared despite anything they read here and it only takes a little research to realize some members are no longer posting. I often wonder myself what happens to them.

Maybe they have moved on with their lives, I hope so. I would like to think everyone does well with surgery but the simple fact is there are problems that come up. Doctors will tell patients the stats and each hopes the 2 or 3 percent that do not make it are "someone else".

I consider myself lucky in so many ways and I try to remind myself every day. I am lucky to be alive, lucky to be a part of VR.com, lucky to have met so many great members, and, hopefully, lucky enough to be around a very long time.

 

[McCln]

Just have to put my two cents of experience here also. I was 36 when I had replacement with St. Judes' valve, about 4 years ago. My aortic valve was in bad shape anyway, been repaired 26 years before. Being on warafin is not bad. Doing a lot of label reading and educated by all sources on the vitamin k issue. Am extremely active and busy at 40. The surgeon will probably suggest the mechanical valve, replacement is later or none. You do have the final say till surgery. Good luck.

 

[Sherry]

I'm a longtime member and thought I would chime in with my experience. I was asymtomatic, gynecologist was concerned with what he heard in my chest, sent me to cardio, ordered an echo, and sent me to Indy for a repair -- eight years ago. I had no VR.Com, so I went in just thinking he would repair it and take care of me. Well, repair didn't work, and he put in a St. Jude's mitral, and when I came to, I was given the news. No choice at all in the matter. I was 33 years old, and this is what I had. The surgeon said that I would be feeling wonderfully in a week or so, but that didn't happen. Developed a severe effusion and almost went into tamponade before they caught it. Had to be surgically drained and put on steroids for awhile. Even now, I still have some issues with pain in my shoulder that I really think has to do with the surgery itself. I've dealt with coumadin now for eight years and really haven't had many problems with it. Are there times when I wish I would have gotten a tissue valve? Yes, but I quickly remember that effusion that I had post op and the recurrent back pain, and I'm really not wanting to have surgery again anytime soon, if for nothing else, just avoid that possibility for a repeat effusion.

It's funny: I always thought of this thing lasting 30 years or so, give or take a few years, but I had my yearly with the cardio today, and (knowing that this thread has been quite active for awhile) I asked him point blank how long he thought St. Jude's were lasting. He suggested that 15-20 years was his guesstimate, but he also qualified that with the difficulty of doing longitudinal studies and the like. Hmmm.

I do have to end this note with an acknowledgement to Gina, Debora, RCB, JoAnn, and Joe (and others whom I'm blanking out on now) for going through repeated surgeries and to Ross for going through the h*** he did. We can all learn from them.

 

[tobagotwo]

Karlynn, the post wasn't nearly as scary as you seem to be taking it. It wasn't posted to make people concerned, and it really shouldn't. I am responding from memory,as I want to relieve any concern it created right away. I'm certain RCB will correct me if I trip over a few dead memory cells.

These are not bad results at all. They are excellent results from an excellent valve (regardless of valve type). Don't forget that most valves are implanted in people 50 and older, so the "youngsters" in the group are likely pushing seventy, and the older ones, who knows?

What is Valve-Related Morbidity?
-It simply means that the person has active valve disease. Not surprising in people who started out with it ten or twenty years earlier.

What do you think they mean by a "bleeding event"?
- It means a bleeding event significant enough that the person sought treatment for it. It doesn't imply life-threatening.

What is the average age?
- Don't know. Depending on the study, mechanical valve owners tend to average 10-20 years younger than the average tissue valve bearer. As it goes over a twenty year span, it would roll with those years. However, I would bet that the 20-year members were mostly 70+. Again, on any of these long-term studies, you have to figure age as a very significant factor in the numbers.

Do you have a similar study for a tissue valve that you can post?
-Not offhand. Many tissue valve studies are for unidentified or mixed brands and types, making it difficult. I am certain there are some out there (and more mechanical ones, too). I don't expect them to come out as rosy as this, based on the average age of tissue recipients (in their seventies). Doesn't make for a lot of 20-year veterans. Or young children, who chew through valves like licorice. If they have a group of 50-60-year-old folks that they've followed, it might approach an apples-to-apples view.

Are there studies out specifically targeting the younger adult, for either type of valve?
- There are, but they tend to have disappointingly few subjects in the tissue studies, and the results are thus more subject to the author's manipulation. I don't like small-time results that support either valve type.

Best wishes,

 

[jeffp]

Hey Ross,
How about a sticky on this section with a side by side listing of stats of mechanicals vs tissue in parameters such as lifetime at age XX, % redo in X years and such with links to respectable sites such as journals, med societies, etc; so the newbies and look, learn and decide with less of the heat in some of the groups we've had lately?

I for one am glad to simply have had the valve replaced vs not. (Maybe we should have a thread on that - probaly would be a bit one sided.) I didn't find the site until after I was home from surgery for a few weeks. Glad I found it and kinda' glad it was after. I was given a choice by the surgeon and not pushed into either way. He was planning to do a repair but wanted to discuss the options if.... As a physician, I thought I knew about coumadin ("knew" it was this awful thing that caused folks to bruise all over with even pressure from their shirt - learned ALOT since then), but still chose the mechanical in a second. Surgery is BIG risky stuff and I was glad to make it through once (barely). I was looking to lessen the odds of doing this again when I'll be older and probably (hopefully not - but I never thought I'd be here either) more frail. Just my 2 cents worth. (If it was tissue and redo every 10 years, vs dying; well, I'd be planning my next hospital stay. Either valve choice is better than none.)

 

[RCB]

May I make a suggestion to the honorable..........

May I make a suggestion to the honorable..........

........Gentlemen from the great state of New Jersey?

"What is Valve-Related Morbidity?
-It simply means that the person has active valve disease. Not surprising in people who started out with it ten or twenty years earlier."

Perhaps in the context of post-operative research the deffiition that best fits
is "the frequency of the appearance of complications following a surgical procedure or treatment." In other word what problems you have after surgery
that you didn't have before.


"What do you think they mean by a "bleeding event"?
- It means a bleeding event significant enough that the person sought treatment for it. It doesn't imply life-threatening."
I belive Mr Lodwick defined it as blood loss resulting in the need for two or more pts of blood.


I yield back the floor

 

[Granbonny]

Motherhen again

Motherhen again

So..cannot keep yall from posting. So, I may as well join I have a stupid question. Do you tissue valvers that already have your tissue Valves.. ...When you say..I hope to have 10-15 years from my valve..Are you deducting the first year..the time to recover from 1st. surgery..and Yes, it takes a year..Even tho..you feel good at 6 months... and deduct the last year? When you start to feel..I'm not feeling so good? so, will that make it like 9 years and 14 years?......And please don't come on and tell me..I feel great at 3 months...We may not have had the same valve .BUT..we did have the same open heart surgery.(.All of us) Bonnie

 

[Debrinha GT]

Believe it or not...

Believe it or not...

Yes, Bonny, I did! I was taking busses one month after the surgey even though I wasn't feeling that good yet, but... well, I was doing other things, and by that I mean more interesting things three months post-surgery. I was dying to get pregnant!!LOL!! And as to the duration question, well, I guess that means from the first minute after the operation to the time for the next one. Again, that was an interesting question and I'll ask my doctor next time I see him. Take care!
Débora

 

[Ross]

I can't explain any better then this, Chevyman Kelly and Englander never made it home from the hospital, Lettitia had a major stroke after hers, Katie is the hospital at this moment going through a very tough time, so whether you think what I say is true or not, I do believe these events alone validate my statements.

My only concern is that each and everyone of you that has to have this surgery, does not take it lightly. Yes I know not everyone is me, but someone out here or coming in will be and I think they deserve to know the absolute truth. It hurts, it's scary, but we all deal with it as best we can. That is all I'm saying. I'm not trying to "Sell Mechanical Valves" I'm trying to hopefully spare someones life in the future. If I can be faulted for that, then fault me, but at least you can't say, "No one told me this could happen!"

 

[Debrinha GT]

Some questions!???????????

Some questions!???????????

Funily enough, I was thinking about Bess the other day!?? I've heard about Chevyman, but don't really know who he was?? And who was Kelly? Does anyone remember Andrea? She didn't take her coumadim properly and ended up needing another surgery one year after her first. I remember she posted a couple of times after it, but I haven't heard from her since.?? Well, I've already asked my husband Robert that if anything happens to me, he's to let you all know. However, I really hope everything goes well once again! By the way, can anyone tell me what the odds are for a fourth redo(mitral valve replacement) on a fourty year-old woman like myself?? And what about scar tissue? How does it really work? I've never understood it very well!!??Thanks,
Débora