Is it just me.....

[Mara]

or is there an underlying current of competition between those who have mechanical valves and those who have tissue valves?

I have noticed that when someone new joins the board that the coumadiners state that coumadin is no big deal and that mechanical valves are the way to go.

On the other hand, I have noticed that the tissue valve people seem to say: pick the valve that's right for you.

I am not trying to start trouble, (although I seem to be the little trouble maker around here), but everything I read about coumadin said that it was a big deal and it was a dangerous drug to be on long term. I know that all the coumadiners here are adept at handling their situations and have the INR thing down to a science, but does that make it right for everyone?
Maybe Mr. Lodwick can weigh in on the long-term effects of coumadin.

Mara, got the RP coz it was right for me, but would never dis anyone with a mechanical valve.

 

[Johnny Stephens]

I think it's just you

I always try to qualify my statements with "for me" or "my experience has been", etc.

It's the truth..Coumadin isn't a big deal for me, although it may be for some. That's not meant to slight anyone else in any way.

I continue to believe that valve choice is a completely individual thing; I, for example, had only 1 choice that would work for me, while others may have several options.

I'm not aware of any underlying current of competition...if you get the valve that works for you, that's all I care about!

 

[Nancy]

I think everything here is in the interest of education, help, and support. We all have equal say, every single one of us. Some have one point of view, some have another, and then someone else will come along with something totally different. It's all good, and it's all wonderful and it's all educational. All we can do is to speak from our own experiences or those of our loved ones. A person who has a Ross talks about their truths, a person with a mechanical talks about their truths, a person with another tissue type valve talks about what they know.

When a new member wants to know about things, I think we all want to tell them about what we have learned along the way. It gives them lots of options and lots of "thinking points" and helps them clarify just how they want to play their particular game.

I say vive la difference, we're all fantastic people, and we all have lots to teach.

This is a tremendous teaching tool, about ALL the aspects of valve surgeries.

 

[ALCapshaw]

From my perspective, it's more a matter of each group speaking their 'Truths' as they know them rather than a matter of competition.

When I did my valve search, I came to the conclusion that each valve had it's merits and consequences. Often, I expect the choice comes down to which set of undesirable consequences one can best live with.

I felt most comfortable with the Bovine Pericardial Valve as the best trade off (for me) between durability and Coumadin. My surgeon was concerned that I would not survive a second surgery after he got 'in there' and installed a St. Jude Mechanical. Now I'm learning to live with Coumadin....

'AL'

 

[LUVMyBirman]

I always say "do your own homework".Chose the valve that best suits your lifestyle. The only perfect valve..... is your God given natural valve. An option we don't have here. We all have our own reasons for choosing the valve we did.

I can also think of a handful of people that did not have a choice at all as their surgeries were urgent. Mechanical were installed. And they will, like some of us here have to deal with the Coumadin for the duration of their lives. Yes, it can be a dangerous drug if not monitored closely enough. Some of us did not have a choice. The medication is keeping us alive. Turning back the clock is not an option. No pun intended. At that, despite the dealings with the Coumadin. I would not change a thing. That is a personal decision based on the fact that I am not interested in repeat surgeries. Given the stats, more than I could survive at my age.

When members come and ask for advice, I would hope they weigh out ALL options. Personally, I was never one to be swayed by a few suggestions.

VR.com is all about support and patient education. Not about competition.
Nuf said

 

[Gail in Ca]

I think I speak for most valvers when I say that no one would chose a mechanical valve if there was a tissue that lasted a lifetime. Since I have had the experience of both, I know how it feels first hand to have the mechanical vs tissue. I guess those of us taking coumadin just need to put the risks of this drug long term in the very back of our minds and just live life to the fullest.
I think the risk of multiple ( 3 or more )surgeries must out weigh the risks of being on coumadin for the rest of ones life.
Do I like being on coumadin? I don't have a choice, so if I dwell on it too much I get depressed. Who needs to feel that way?
When someone on this site asked how my life style had changed once I got the mechanical, I really began to think about it and it totally depressed me for quite awhile. I had to dismiss those thoughts, as they certainly do no good whatsoever!
So, as a final thought to all you with tissue valves, enjoy those years to the max!!
Gail

 

[Christina]

Competition should never enter into this...

Competition should never enter into this...

Just being truthful as we are obligated to be to all the newbies who are facing this surgery.
They come here to be educated and become informed, and with our experience we are able to share our stories.
No one on this forum is telling anyone which valve to choose over another! This is a very personal decision and no one should interfere with this.
But Coumadin is REALLY no big deal for me anymore since I bought the Protime machine. That's the truth!
VR.com is all for education and support, and competition shouldn't enter into it.

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
Tucson Medical Center, Tucson. AZ
Dr. Gulshan Sethi
St. Jude's Mechanical

 

[Perrster]

It's just you

It's just you

Mara,

Like the others before me I believe VR.com is all about education and support, and not any sort of competition.

In the context of "competition," the Mended Hearts organization has over 20,000 dues paying members. This group is primarily made up of bypass folks and very few valve replacees, Ross's, etc. We valvereplacee's are a minority when it comes to open heart surgical procedures. I quit Mended Hearts because I could not relate to or get support from anyone.

In addition, no one on this support site (except perhaps, Al Lodwick) should be giving medical "advice." Valve "choice" cannot be made without a medical professional's (cardiologist's/surgeon's) consultation.

Did I mention Coumadin? Nope. I really don't think about it anymore. I routinely take it every day and get my Protime tested once every four to six weeks.

 

[Mara]

Maybe you guys are right. But even amongst you there is disagreement. Gail deals with her coumadin experience differently than Christina or Gina or Perry.
Al got the mechanical but it was not his first choice, so now he's "learning to live with Coumadin."

But, on the otherside, there are those of us, like me, who for one reason or another, were told that mechanicals and a lifetime of Coumadin were more harmful than helpful. So, I got the RP and I suppose, am looking at a future surgery. But, no one knows that for sure. I could get hit by a bus tomorrow, or my valves might beat the odds.

Truthfully, I am glad I don't have to be on Coumadin. I spent most of my life worrying about a heart condition and now, finally, have the chance to but that day-to-day worry out of my head. Some days I even forget I had aortic stenosis. I think, for me, that having to take that pill everyday would just keep on reminding me that I was a "heart patient."
I applaud you guys for dealing so well with it and hope that you never have any complications from use of the drug. You do make it seem that Coumadin is no big deal.

See you all later
Mara

 

[Nancy]

Mara-

No matter which valve you have there's always the possibility of failure. Our bodies aren't perfect and heart disease can weaken tissues, as can age and other health problems, stitching can come loose because the tissues weaken, causing leaks, blood clots can form on valves, infection can set in. Other health problems can also happen. Everyone gets older and stuff happens, even during the course of regular old living. Look at all the problems Joe has had in his life, up to and including worrying about his very old valve (Bjork-Shiley mechanical) which was manufactured by a company which no longer makes valves for the USA market because they had terrible valve failures.

We can all drive ourselves crazy worrying about what can happen.

The only way to not drive yourself crazy with worry is to live for the moment and the day. If you feel good that day, then it's wonderful.

Relax, your Ross will give you many years of health, And even if in the distant future you have to have a replacement, there might be other fantastic Coumadin free valves.

You sound very healthy. Enjoy life and be well.

 

[Christina]

Hi Mara,

The RP is probably right for you. You are young, just got married last year and might want children in the future. With a mechanical valve and Coumadin you cannot have children.
Mara, I sincerely hope your RP will last for a very long time. Live life to the fullest girl and have fun! Don't make this out to be a competition between mechanicals and tissue valvers.
No matter how many people we encounter on this site or anywhere else in life, all will tell you similar but different stories.
All think and act differently, and some people will tolerate things much better than others.
My surgeon right away told me I had to have a mechanical, and that it would last me the rest of my life. I liked what I heard because I certainly didn't want a second surgery if I didn't have too.
No one told me that the RP was available, and I didn't hear about it until later when I heard Ben Smith's story. The RP appealed to me too but my surgery had already been done. I probably wouldn't have been the right age anyway. I am trying to make the most out of what I am given every day, and make the best of it, Coumadin and all.
As Nancy said, any valve can fail or something can go wrong. There are no guarantees!
I had to have my mechanical replaced after 11 days because of a blood clot. Nothing that I did wrong, but either way it had to be redone. Real bummer!
We all hope that our particular valves will last us the rest of our lives, but the only valve that has the data is the mechanical. The rest might last a long time as well, but most won't last a lifetime and need to be replaced at some point, sometimes within a few short years.
Perry, I also did not identify with the "Mended Hearts" group. The people that I met were mostly people with multiple by-pass surgeries. The same I encountered at rehab. For the three months I went, I met very few that had had valve surgery.

Now go do something nice!

Christina
Congenital aortic stenosis
AVR's 8/7/00 & 8/18/00
Tucson Medical Center, Tucson. AZ
Dr. Gulshan Sethi
Mechanical

 

[Johnny Stephens]

OK, so you don't like mechanicals or Coumadin. I'm happy that you had a choice and could avoid it, but I had no such choice. Yep, taking that pill reminds me I'm a heart patient, but there isn't a damn thing I can do about it.

 

[Zipper]

I believe people here offer the best knowledge they have in relation to their own experiences. I have not viewed it as being competitive at all.

Since the ultimate decision for any of us is made between the patient, their cardiologist, and their surgeon I can't imagine anyone not ultimatey following the advice of those professionals. It would be my hope that each patient has been fully informed of all options, when time allowed, and has followed the professional opinions that apply to their individual situation.

As many here join this forum after surgery, I think we're all here to share information, ask questions, and help if and when we can. For those that are fortunate enough to find this forum before surgery it is such a learning experience that leads them to know the questions to ask their Doc's regarding choices. Airing of different experiences and opinions is informative, not competitive.

Happines and Good Health to all Valvies!!!!

Zipper *~*

 

[Mara]

Just when I had lost faith in human kind you all come along and remind me that people are good and that you care.
Thanks .

Nancy, I hope my RP lasts forever, and I'm not really worried about it at all. I think it's pretty cool. A guy like your Joe gives us all hope that we can get thru anything. But, then Joe has you, his number one cheerleader and lifemate extrodinaire! Everyone should be so lucky.


Mended Hearts! phooie. Those rats took my money and I never heard another word from them, didn't even get their cheesy newsletter. I am thinking of starting a group for valvers at the hospital where I had my surgery. We seem to be the stepchildren of the cardiac world.
Why is that? Any insights? Is it that the AHA puts so much emphasis on coronary artery disease and that so many people have it? What about us!

Thanks for listenting and putting it all in the right perspective!
-Mara

 

[Blanche]

Mara

Mara

When Albert had his mitral valve done in October 1990, we had little information and few sources of information available to us. The doctor said "mechanical" and that was that. For
10 years, l month, and 28 days, it was life as usual. There were no problems whatever. Then, Up jumped the devil. In all the time since his surgery, we never thought to seek more information on his condition or on anticoagulation. Now, I thank heavens for this board and the links it provides to vast amounts of information. Of course things have changed and advancements have been made since l990. Did you know that cardiac rehab was not recommended for valvers? It was for people who had heart surgery!!!!

I recently found an article on the Coumadin forum here, posted by KristyW on August 29, 2002. It details the proceedings from an Anticoagulation Symposium roundtable discussion, "Anticoagulation--Use, Management and effect on Quality of Life." In this discussion 10 cardiac surgeons and cardiologists address state of the art issues. The following quote by Dr. Luis Mispierta, Baltimore Maryland, Chief, Division of Cardiac Surgical Services, Union Menorial Hospital might interest you.

"I think direct patient involvement in their management increases compliance. And therefore, I think the fact that this is available now will make me more likely to use a mechanical valve in patients where in the past I would have used a tissue valve..."(top of page 6)

I hope you find the information interesting. I too would like more information on long term Coumadin use. Let's home Al Lodwick has some for us. Look as I will, I have not found very much on this important concern. In have enjoyed the discussion that your topic generated.
Regards,
Blanche

 

[Nancy]

Hi Blanche-

There are a couple of people here who have been on Coumadin for a long time. My husband has been on it for 25 years. There is also Joann (member name John & Joann). She's been on it even longer. There might be others also, I hope they post.

I can't really detect any problems with Joe's Coumadin in all those years. Throughout those years he's been up and he's been down as far as INR goes. During the bleedout after his gallbladder surgery when something went wrong in the OR, he was off Coumadin entirely for a very long time, over 7 days, and he had to be on things to help clot him up. That was scary for me and his doctors also, but he made it. He's had some serious falls when his heart rate was too slow and he fainted, hitting all kinds of stuff on the way down. He had major bruises, but they all healed.

So, I don't know what more I can say. There really is nothing bad about it that we can see. We do insist that he's kept in good control though. His doctors are good about that. But we still keep a close eye on it ourselves especially if his regular doc is on vacation.

I think a lot of people are put off because it's the stuff that rat poison is made out of.

But who would have ever thought that people would have themselves injected with botulism toxin, just to get rid of wrinkles, which is the hot new thing these days???

Good control is the ALL about Coumadin.

Hey Mara-

You said the magic words, that you're not worried about your Ross. That's what I was waiting to hear. So enjoy the rest of the weekend.

 

[Mara]

Nancy-
You are one of the most special people I have ever known. Thanks for all your great words of wisdom.

-Mara

 

[Jennie]

In my decision of mechanical vs. tissue, I knew deep down what I really wanted - a tissue. It was just the right thing for me at this stage in my life. Some day I may become a mechanical. The main issue that all of us here have had (or are having) to deal with is the realization that none of us can see the future. There is no perfect choice here. As Gina was saying, our God-given valves are no longer an option. So we each have to weigh the unseen matters of the future - our best guess at the risks versus the benefits of each valve - and choose what we think would be the best choice for our particular body and lifestyle, and pray that it pans out in the ideal way.

As I try to explain to my friends: we valvers have to choose BODY PARTS. Other people have major surgeries, but not many of us have to make a selection like this. How does the average guy on the street make such a decision??? And there is no "ideal" choice. They all have risks. I tell you, when I first started having to deal seriously with this, I used to go for a long walk after work, to de-stress and think. And it would cave my head in. I would try to find the logic, I would try to work it out to the "right" conclusion, and BAM!! I'd hit a brick wall. I know we all have our opinions on this valve versus that, but we are in the same boat here. I am just very glad to have had the support of other folks who've been in my shoes!!

And regarding the CABG folks! I love all of you who are hanging around here! But, I must say, it was very frustrating before I found this site. For years, the only Heart Disease info I could really get my hands on was related to this. "Lose weight, eat well, exercise, and you will get better." Hah. Though, I will say, I love walking into cardiology waiting rooms and seeing the ton of older folks (no offense anyone, but it does tend to be the case ) and having them look at me like I'm in the wrong place. And now, after my surgery, I feel like ripping my shirt open and saying HEY!! LOOK AT THIS!! You think I haven't been through this too??!!

But, of course, I refrain....!!

-Jennie

 

[John Cochran]

I perhaps have a slightly different view on all this. I have an 18 year old daughter who has a disability due to a genetic "accident" before she was born. Every day I've watched her challenge her limitations, fight the battles to be accepted among "normal" kids, and try hard to achieve up to her capabilities. Unlike all of us, there are no surgical corrections for her, no choices as to procedures that can fix her problem; she has to come to the best accomodation she can with the cards she's been dealt.

To a large extent, all of us valve replacement folks are like that too. There is no perfect surgical correction for us. Every choice, mechanical, xenograft, homograft, Ross Procedure, has its own risks and tradeoffs. We all try hard to come to some kind of accomodation with our post-op situation; the healing is as much psychological as it is physical.

The problem I have is when some folks over accomodate, and decide that their choice is the "best" for everyone and then begin to prostheletize (I know of no one here who does that, but I have encountered people like that before). It is easy to forget that there is a large mental decision matrix that informed VR patients must go through, and every choice has its own benefits, risks and trade-offs.

Now this comment will get me some heat, but please take no offense. When I hear people say "Coumadin is no big deal," I just about go ballistic. Coumadin is a HUGE deal. My son had a major bleeding catastrophe while on Coumadin even though he had been religious about his dose and getting checked. Coumadin requires careful management and professional monitoring. Now, that doesn't mean that it can't be managed, and that people can't live quality lives. For many people, there was no choice. But for new people to this site asking for advice on valve selection, I believe it is a gross over-simplification to say, "Get a mechanical valve. It will last forever, and Coumadin is no big deal." Informed choices include consideration about hemodynamics, probabilities of thromboembolitic events, available hospital/surgeons and experience levels, failure modes and probabilities, lifestyle, pregnancy, overall heart physiology, other co-existing health problems and more.

If, after evaluation of those criteria, a mechanical, bovine, porcine, stented/stentless, homograft, repair or Ross Procedure is the choice for that person, great! But let's all make sure that people asking for our collective opinions understand that this is ALL a big deal, and that they will adjust much better in the long run if they are confident that whatever choice they made was made with due consideration to all of the issues.

*stepping off of soapbox, turning to salute all of you who've learned these lessons through hard experience*
--John
P.S. to Jennie,
If you ever do decide, upon entering a cardiologist waiting room, to rip off your shirt and holler, "See!"...could you please videotape it and post it for the group? Not as something prurient, but I'm sure we'd all like to see all the "geezers" keeling over from heart attacks!

 

[Billy]

Hear, hear John

Hear, hear John

Well said John.......

I really like people who speak their minds, even if they say something a little controversial at times. If we all agreed on everything that was posted, this site would become dull and boring.

See, it's only by folks like Mara 'speaking out' that we can discuss the little topics that bug us from time to time and you know what Mara?........ I think there is some substance in your original post.

Thankfully I don't have a valve so maybe I would be considered somewhat impartial. I just read as much as I can and digest what I consider logical. For a time I thought that we had a few VR.com members on the 'Saint's' payroll, but then I dismissed the remarks as isolated cases of blatant insensitivity and ignorance.

In any group of people you will find some who advise with care and an open mind and then there are those who become over enthusiastic, often without the necessary knowledge. What works for one may not work for another........one man's meat is another man's poison.

This is the only 'danger area' in a forum such as this - a little knowledge can be dangerous and unfortunately sometimes the empty vessels make the most noise. Hank, as Moderator, now keeps a close eye on the 'new advancements' section which did begin to get out of hand a few months back. Where he 'draws the line' in his decisions will probably not always please everybody.

The recent disappointing failures in the valve world bring it home to everyone that even a product which has been on the market and appears to be tried, tested and approved may still go wrong for a variety of reasons. Those who extolled the virtues of these devices and have been proven wrong, should act as a deterrent to anyone who is tempted to follow their example in the future.

A modest recommendation for something that one believes in is fine in my book. Shouting from the rooftops and emblazoning your 'hero's product' on a tee shirt's backside is something which I find personally revolting and has caused me considerable pain in the past.

I have a hard time sharing some people's enthusiasm for a company and a product that made such a drastic change to my life, especially when their enthusiasm reaches an unnecessary level.

Maybe I'm not impartial after all, but that's my two pence/cents worth and I trust that most will understand my particular set of circumstances and my resulting pain and anger.