Thought I had My Mind Made Up...Confused

[geebee]

....And if I have to have the Mitral valve re-replaced, I will NOT hesitate to go with a mechanical valve again even though there is no guarantee that it won't fail sometime in the future. .....

Ditto for me.

 

[Karlynn]

No, I think the point was that it doesn't make any sense to continue to discuss a topic on this thread that has already been refuted time and again.

VRVI

 

[Bina]

Speak no evil of coumadin or your post will be deleted ? If that is the censorship you are imposing Ross I may have to just say goodbye at this point.

Adam, I don't see any censorship here, go back and read the posts;
Ross was agreeing with Rachel's statement, that "The cumulative risk of coumadin has been well discussed above and elsewhere."
He is referring to the 1% cumulative risks that have been discussed making some members think that after 30 yrs on that drug they would be in a terribly high risk area of bleeds, etc.
It is just not so, and TobagoTwo has explained it perfectly 2 or 3 times now.
Thus, there is no need to discuss cumulative risk any further.

It reminds me of when the cancer society says that 1 in 9 women will develop breast cancer in their lifetime...I look at 8 of my friends and wonder which one of us will get it. The chances are equally good that nobody in my group of 9 will get cancer. My doctor pointed this out to me.
She said that is how statistics are interpreted when NO other risk factors are present.
That means in my group of 9 women, one may die of diabetic complications, one may be hit by a car, one may have a heart attack, etc. before they ever get a chance to develop breast cancer.
Now those 1 in 9 numbers look different don't they....

 

[Ross]

Speak no evil of coumadin or your post will be deleted ? If that is the censorship you are imposing Ross I may have to just say goodbye at this point.

First off, if your going to be disrespectful, at least include the full post.

http://www.valvereplacement.com/forums/showpost.php?p=270390&postcount=36


You know, I read this last night and decided to walk away and calm down. Well lets see, the misinformation or misinterpretation of that information still exists in the thread. The deal over Cumulative Risk was moved to Anticoag and will be discussed, so the way I see things are like this. Once again you are posting for only one purpose and that is to create problems or to extend them. As admin, I've asked nicely for it to stop. It didnt and as I see hasn't.

Hank has given me a job to do. I am doing that job whether you like it or not or anyone else for that matter and I will not be undermined by you or anyone else. Your attitude is very disrespectful and the post serves only to cause problems for me. Bottom line, if you don't like the way the rules are applied, then yes, please leave. That goes for anyone else that can't follow directions, has total disrepesct for the admin, can't speak to another humanly, post without creating a war or posting solely to cause war or other of the various problems being seen here. You wouldn't talk to Hank like this and I don't get paid to be talked to like this, so consider this your second warning. I will not be talked to or disrespected like this again! I think I'm being much nicer then I intended to be.

 

[greg]

Karlynn, maybe you are right.

Reason I'd choose a different valve:
Cumlative or not, coumadin is a drug I'd rather not be taking.
Granted that is an opnion developed after only 4 years.

I don't like taking a pill 'daily or die'. I don't like getting the Rx filled. I don't like the 'forever' blood tests. I don't like small cuts scraped or bruises lasting like the energizer bunny. And believe it or not, I don't like having a bruised penis after sex.
My six year old granddaughter brings her friend over to listen to me cick.

Why choose to be bridged off and on coumadin at an age in my life that more medical problems seems to be more a part of?

Yes, these are all things I can live with. Yes I made the decision myself.

Each to his own.... I'd choose different if I was doing it over.
I'm tired of coumadin.

 

[Karlynn]

My six year old granddaughter brings her friend over to listen to me cick.

My kids used to love to "show off my click" to their friends. One told me I should dress like an alarm clock and send in a video to David Letterman's Stupid Human tricks.

 

[geebee]

One of my nicknames is "crocodile" after the one in Peter Pan. I have always loved that since Peter Pan was one of my favorite childhood stories. Now I am living it - sort of.

 

[njean]

I remember going to my little nephew's T-ball game & sitting on the bleachers & this little boy leaned against my back & he taps me on the shoulder & said, "I think you swallowed a clock!" I still burst out laughing thinking about that!

 

[DeWayne]

Lots of stuff posted in this thread. I wil chime in for some reason or another. not sure why.

Valve choice is a very personal choice. The great thing is we HAVE a choice. Either way you will be better off than before you have your surgery.

I know I had reservations of using a mechanical valve, which my cardio pretty much assumed was the way to go, my surgeon on the other hand liked the medtronics freestyle tissue valve. When it came down to asking questions the on-x was of interest but my surgeon said that due to the fact I needed the aortic graft it was not the best way to go since they don't come with some collar or something for attching things, no entirely clear on what that was but I understood it at the time.

My Neice at the time this came about worked in the cardio center of the Mayo Clinic. So of course I pumped her for anything I could get lol.

And she would ask her surgeons my questions and I could compare them to the answers I was getting from mine.

I finally decided I wanted a tissue valve based on things like noise, coumadin which my Mother had tried to take but had bad side effects from. Several factors in my final decision.

After I had made that decision the next day my Neice calls me to an answer to a question I posed. I asked her to ask her best surgeon given the situation I was in if it was HIM that had to decide what would he choose.

His answer was if it was just the valve he would do mechanical, with a aortic graft he would go tissue. It made me feel real good about what I had decided. I never once worried about it after that, and actually once I had decided which valve I relaxed and waited for the day and went in got it done and started recovery.

Here I am 18 months out and I have never questioned my decision. The thing is you will get a different response from every person you ask, you must decide which of the pluses and minuses of each way fits your lifestyle yourwants and desires. Once you make the decision trust me you will relax and feel 100% better and things won't look so bad.

 

[KMS]

Wishing you well

Wishing you well

Lorie -

You are doing the right thing by researching and gathering as much information as possible prior to your surgery.

I did the same thing 20 months ago when, at age 43, I was diagnosed with a badly leaking bicuspid aortic valve and an aneurysm. Having been asymptomatic, the diagnosis was a shock and I spent the next six weeks before my surgery researching everything I could find regarding valve selection. Lots of information to sift through...

Ultimately, I decided on a stentless tissue valve. Like most people on this site, I'm very happy with my choice. I take two baby aspirin each morning and feel better than I ever have. I was a casual runner (and motorcycle passenger!) prior to my surgery; even though I'm running fewer miles now -- to give my knees a break -- I've cut my running time by over a minute per mile. Given the fact that I had a five day hospital stay for the surgery, a smooth recovery (MUCH better than I ever expected) and feel so good now, I would definitely make the same choice. I almost never even think about the fact that a year and a half ago I had a really big procedure.

Yes, I'll have another surgery in my late 50's/early 60's. I knew that when I made the decision and am completely at peace with that. For me -- and you've seen most people sharing this thought, regardless of their choice -- it was the right decision.

Keep reading, researching, learning and you'll come to the conclusion that's right for you.

Wishing you the best, Lorie.

Kristine

 

[harleygirl528]

Hello Everyone!

I was able to take a much needed break from all of this and traveled for 4 days to Oregon to visit my family with my sister. She happens to be an RN so I knew I would be well taken care of! Anyway, I just returned this evening and was amazed to see the continued responses to this thread. I really appreciate everyone?s input and each and every reply adds insight and information which helps me with my decision. You guys are fantastic!

Kristine: I so appreciate your reply, in particular, since it sounds like we have a very similar situation. I am 41 (about same age you were) and have a leaky bicuspid valve with aneurysm, also asymptomatic. I am happy to hear that your experience with surgery and recovery was a positive one and that you are recovered and doing so well. Thanks for sharing your experience and I hope I do as well as you!

DeWayne: You are right, I have also heard that due to the aortic graft the tissue valve is a better choice and I too dislike the idea not only of being on Coumadin and dealing with all of those issues but the clicking noise. I know that many deal with these issues with humour and take it all in stride and are living very well. I know ultimately that I too will deal with whatever situation I end up with and will just be happy to be alive. I am just glad that I do have a choice.

GeeBee: I love your new avatar?.you look great and I love the movie Peter Pan?.you are such an inspiration to us all and it is so encouraging to know that after 27 years on Coumadin you have not had any complications and have thrived. Thanks for always contributing and sharing.

Karlyn: I agree, sharing your reasoning behind your dissatisfaction with valve selection is helpful?but I also respect a person?s right to speak one on one to someone who starts a thread. I have received almost 100 personal messages in the short time that I have joined this site and have gained immense perspective and information from people who prefer to communicate directly with me. I have also made a lot of ?friends? and chat daily with some folks who have offered support and encouragement, in addition to sharing information. Thanks to you for always responding and adding value.

ShezaGirlie: I will be sending you a personal message?..am interesting in hearing your story!

Norma: Wow, 30 + years and sounds like you are doing fantastic! I am glad to hear that Coumadin hasn?t been an issue for you and since I will likely choose mechanical next time around that is encouraging. You are right?.nothing lasts forever and that is an excellent point you make?mechanical valves do not necessarily mean no more OHS. Thanks again Norma and I wish you continued health and happiness!

Rachel: I know you have really been through a lot and it makes my situation pale in comparison. I am taking your advice and looking for the best surgeon and heart center the first time around despite the fact that I will probably be traveling out of area. I like the idea of buying myself 10+ years of Coumadin free living and then getting mechanical next time around. I guess there are no guarantees?we can just pray for the best and do our research. It is not that I am not ready to limit myself to one drink a day?if that were the ONLY compromise I would have to make then I would go mechanical and be done with it. But, my sis is a nurse and she says she sees lots of people with complications from Coumadin and because of my lifestyle, athletic, traveler, motorcycle rider, (and drinker) just doesn?t fit into the equation right now?.for ME! I respect others decisions, however, and their experiences are well noted.
Bina: Guess you figured from my previous replies?I like you idea of going tissue 10-15 years and then going mechanical. I have had several surgeries and although nothing can compare with the serious nature of this surgery, I tend to do pretty well. Thanks for your support and encouragment!
Ross: I agree, there are situation where ?Big Names? make mistakes?.but I must say that Johns Hopkins is a world renowned research hospital and it just surprises me that they would publishing a ?mistake.?. Although I know that you and many others on this site have done so well and have not had complications with Coumadin, I am sure it doesn?t mean that risk with Coumadin use doesn?t. I say this with the utmost respect for you Ross but I still think that since we are so quick to point out the danger in reoperations for tissue valves we must also acknowledge the risks of Coumadin use after mechanical valves, regardless of whether they are cumulative or not. Also, I think you are overemphasizing my alcohol use?that really is NOT the issue?.just one of the factors. I really doubt I am at risk for ulcers because of my occasional drinking, As I mentioned, if my ONLY condition or risk for Coumadin use was alcohol consumption then I would choose mechanical valve and life-long Coumadin use hands down.
Tobagatwo: Once again, your insight and intelligence sheds a lot of light on an otherwise confusing scenario. I am curious, you noted that you have chronicled many of your personal concerns over Warafin use in the past. What specifically, if you don?t mind my asking, are your personal concerns over Warafin use? I understand the risk of reoperation but want to be clear that I really understand the risks of Warafin. Rachel pointed out the underestimated risk of ?valve strand problem associated with mechanical valves.? What exactly does this refer to? As always, thanks so much for the clarification and insight that you always add to these discussions!

Thanks again to everyone for your continued contributions. I have tried to acknowledge everyone because I know it takes a lot of time and effort to respond to these threads and I REALLY appreciate it immensely!

 

[Ross]

Lorie the information is incorrect on Cumulative Risk and the discussion about that was moved out of your thread to the Anticoagulation forum for further discussion. I have no problem with information that is correct about Coumadins dangers, but incorrect information left unchallenged for anyone else reading and thinking about replacement, it's unfair to them. I fully respect your wish not to be on it and respect whatever you choose.

Why it is that when misinformation or misinterpretation of information when corrected around here automatically makes it a "Speak no evil" of Coumadin thing? If it's incorrect, we are going to correct it. If it's correct, your not going to hear me peep. Sure, if you don't respect the drug, there are dangers. That's true with any drug, not just Coumadin. I think from now on, since this is an issue with people here, that we simply correct the correctable and if things need to be discussed further, We create a new thread dedicated to it. Virtually every new person that comes into the forums has heard nothing but horror stories and myths and never once go and study up on the drug at all. They've been preconditioned to think NO, thanks to old ways and poor advice from Medical Resources. All one need do is go and study up on the drug themselves. All I'm asking is that it's given a fair shake as it has saved far more lives then it's ever taken.


Believe it or not, I, once upon a time, was a hard partier. I drank enough for everyone on this board and then some. Perhaps it's just having done that is what leads me to sort of single drinking out. I really don't mean to make a huge issue out of it and in anyway imply that maybe you party too much. Guess I'm trying to explain where I'm coming from.

Anyway, I wish you best of luck in whatever you get and still cringe that you haven't gotten it yet. I don't care if you Moo, Oink or Click or even have a natural valve beat so long as it's one of these when it's all said and done.

 

[Karlynn]

Ross: I agree, there are situation where ?Big Names? make mistakes?.but I must say that Johns Hopkins is a world renowned research hospital and it just surprises me that they would publishing a ?mistake.?

And this is the tragedy - Johns Hopkins article is - point blank - wrong. And it's not just been members with mechanical valves who have said so. But because the article is out of Johns-Hopkins it makes the rest of us look like we're trying to paint a rosey picture or pull the wool over people's eyes. I have had well-known doctors almost kill me with their "expert knowledge", so I refuse to believe what a doctor or hospital says is right - just because they say so. Particularly when there is much more information out there proving it to be wrong.

Harleygirl, I'm sure you've chosen tissue out of good reasons for your life right now. I just encourage you to not use the Johns - Hopkins article or the statement made by your doctor as one of those reasons.

 

[Susan BAV]

And this is the tragedy - Johns Hopkins article is - point blank - wrong. And it's not just been members with mechanical valves who have said so. But because the article is out of Johns-Hopkins it makes the rest of us look like we're trying to paint a rosey picture or pull the wool over people's eyes. I have had well-known doctors almost kill me with their "expert knowledge", so I refuse to believe what a doctor or hospital says is right - just because they say so. Particularly when there is much more information out there proving it to be wrong.

Harleygirl, I'm sure you've chosen tissue out of good reasons for your life right now. I just encourage you to not use the Johns - Hopkins article or the statement made by your doctor as one of those reasons.

Perhaps someone could ask the ACT Director what he meant by the phrase he used in his report.

 

[harleygirl528]

Hello Everyone,

Just an update and a bit of positive information. I had the distinct pleasure of speaking via telephone to Dr. Sharo Raissi at Cedars Sanai Hospital in Los Angeles regarding my situation. He reviewed all of my records and echocardiogram, ct angiograms, MRI etc and felt that my aortic valve was functioning "beautifully" as he put it, even though it is bicuspid. To make a long story short, I have chose to go with Dr. Raissi for surgery in January, date to be determined tomorrow. And, in his professional opionion, there is a strong chance that my native valve will be salveaged. They will, of course, do some tests via TEE by raising my BP and seeing how the valve functions under various situations before determining its viability, but he says that I have the classic presentation of someone with a connective tissue disorder involving a high functioning bicuspid valve with an aortic aneurysm that extends up into the beginning of the arch. So, this conversation may have been in vain but I do, of course, need to have plan B just in case my valve does not pass the test and has to be replaced. He felt that bovine tissue was the best option for me even given my fairly young age (41) due to many factors including the risk factors of Coumadin, particularly for someone with connective tissue disorder, which includes many of us with this sydrome of bicuspid AV and aneurysms. He said that they simply "work better" and felt that by the time I needed a replacement they will have perfected the percutaneous valve replacement technique. I know, don't make decisions based on future technology but I can't help bu respect the opinion of someone so highly regarded in this field....and besides I would go tissue even if I have to be opened up again in 10 years.

Anyway, I will probably start a new thread under the pre-op forum once I have selected a date but just wanted to update everyone.

I thank you all again for the information and I can't tell you how much site has helped me in the last 6 weeks. Thanks, particularly to Arlyss and Rachel for recommending Dr. Raissi!

 

[Lynlw]

Hello Everyone,

Just an update and a bit of positive information. I had the distinct pleasure of speaking via telephone to Dr. Sharo Raissi at Cedars Sanai Hospital in Los Angeles regarding my situation. He reviewed all of my records and echocardiogram, ct angiograms, MRI etc and felt that my aortic valve was functioning "beautifully" as he put it, even though it is bicuspid. To make a long story short, I have chose to go with Dr. Raissi for surgery in January, date to be determined tomorrow. And, in his professional opionion, there is a strong chance that my native valve will be salveaged. They will, of course, do some tests via TEE by raising my BP and seeing how the valve functions under various situations before determining its viability, but he says that I have the classic presentation of someone with a connective tissue disorder involving a high functioning bicuspid valve with an aortic aneurysm that extends up into the beginning of the arch. So, this conversation may have been in vain but I do, of course, need to have plan B just in case my valve does not pass the test and has to be replaced. He felt that bovine tissue was the best option for me even given my fairly young age (41) due to many factors including the risk factors of Coumadin, particularly for someone with connective tissue disorder, which includes many of us with this sydrome of bicuspid AV and aneurysms. He said that they simply "work better" and felt that by the time I needed a replacement they will have perfected the percutaneous valve replacement technique. I know, don't make decisions based on future technology but I can't help bu respect the opinion of someone so highly regarded in this field....and besides I would go tissue even if I have to be opened up again in 10 years.

Anyway, I will probably start a new thread under the pre-op forum once I have selected a date but just wanted to update everyone.

I thank you all again for the information and I can't tell you how much site has helped me in the last 6 weeks. Thanks, particularly to Arlyss and Rachel for recommending Dr. Raissi!

This is great, it would be wonderful if you good save your valve, and the fact things are moving faster and you can be relatively close makes it even better. I wish you much luck,Lyn

 

[WayneGM]

Hello Everyone,

Just an update and a bit of positive information. I had the distinct pleasure of speaking via telephone to Dr. Sharo Raissi at Cedars Sanai Hospital in Los Angeles regarding my situation. He reviewed all of my records and echocardiogram, ct angiograms, MRI etc and felt that my aortic valve was functioning "beautifully" as he put it, even though it is bicuspid. To make a long story short, I have chose to go with Dr. Raissi for surgery in January, date to be determined tomorrow. And, in his professional opionion, there is a strong chance that my native valve will be salveaged. They will, of course, do some tests via TEE by raising my BP and seeing how the valve functions under various situations before determining its viability, but he says that I have the classic presentation of someone with a connective tissue disorder involving a high functioning bicuspid valve with an aortic aneurysm that extends up into the beginning of the arch. So, this conversation may have been in vain but I do, of course, need to have plan B just in case my valve does not pass the test and has to be replaced. He felt that bovine tissue was the best option for me even given my fairly young age (41) due to many factors including the risk factors of Coumadin, particularly for someone with connective tissue disorder, which includes many of us with this sydrome of bicuspid AV and aneurysms. He said that they simply "work better" and felt that by the time I needed a replacement they will have perfected the percutaneous valve replacement technique. I know, don't make decisions based on future technology but I can't help bu respect the opinion of someone so highly regarded in this field....and besides I would go tissue even if I have to be opened up again in 10 years.

Anyway, I will probably start a new thread under the pre-op forum once I have selected a date but just wanted to update everyone.

I thank you all again for the information and I can't tell you how much site has helped me in the last 6 weeks. Thanks, particularly to Arlyss and Rachel for recommending Dr. Raissi!

Sounds promising, Harleygirl. It also sounds to me that you've explored your "Plan B" options and have made an informed decision that is right for you. I don't think there is a wrong choice as long as you are comfortable with it and it does the job. Best wishes and good luck. You'll back on the hog before you know it.

 

[Boo I need a valve]

Dear Harleygirl

I really lamented over valve choice before the surgery. Having gone through it now I am very happy I went mechanical. It takes a long time to recover 100% after the surgery. They say 6 months for someone my age and 1 year for someone in their 60?s.

Regarding eating ? I thought I would have to be very careful, but I have been very stable without much attention to what I eat. I do moderate: ie When the broccoli comes out (once every few weeks) I just eat half the plate, instead of the whole plate. But I will say I am not a heavy drinker, so moderating to a half glass of wine was no problem.

I do understand heavy binge drinking can be equivalent to taking anti-biotics And spike up your INR. I know that anti-biotics are a risk because they kill the bacteria in your stomach that produce a large portion of the vitamin K your body absorbs. Maybe alcohol kills these as well? So getting sloshed may be something you would have to give up? either that or make it a full time habbit. If you self monitor INR, there may be an option to regulate your coumadin intake based on when you drink, but I have not heard of people doing it.

Regarding exercise and activities ? I have lived restriction free ? hit myself with a hammer, cut myself repeatedly doing construction work, shave with a razor? barely a noticeable difference. But I had an AVR and keep my INR in the 1.8 to 2.5 range ? which is fairly low.

Regarding the 1% comment. My cardio and my own research were very clear on this. You have to realize this statistic is what he calls ?all comers? which includes a large part of the population that is erratic with their Coumadin, people unaware of potential reactions, older folks, as well as people with other issues. Your kidneys may be other issues, I don?t know, but being young and conscientious enough to do your research on the forum would make me believe you would fair much better then the 1% per year statistic.

Good luck with your decision.

 

[Karlynn]

Regarding the 1% comment. My cardio and my own research were very clear on this. You have to realize this statistic is what he calls ?all comers? which includes a large part of the population that is erratic with their Coumadin, people unaware of potential reactions, older folks, as well as people with other issues.

"All comers" - I like his term. Great way to explain the wide variety of people and their medical issues that make up the risk percentages.

 

[Earthsciencerocks]

Long lasting tissue valves

Long lasting tissue valves

I read this a while ago.
It was interesting to say the least.
AHA site caries it.

http://www.heart.org/presenter.jhtml?identifier=3043397

God bless everyones decisions!
Merry CHRISTmas!