The near future (non-mechanical)

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The info is useful, though the rate of Atrial Fibrillation is a bit depressing (about 30% for pig valves I've read), does anyone have info on what factors reduce this?

Wierd thing is, though, despite all the helpful stuff people have written, and it IS good, dispelling many myths, I still can't bear to think of myself on Coudamin.

Why? I don't know. Maybe it's because I don't put the same value on my life as many of you - I've seldom been happy as it is, without another weight around my neck. Maybe it's my personal need for freedom. I don't know.

I admire some of you for your fortitude in the face of it all - you've certainly got what it takes.
 
Andyrdj said:
Maybe it's my personal need for freedom. I don't know.
QUOTE]

This reminds of the phrase from the Kristofferson penned song that says "freedom's just another word for nothing left to lose". That reminds me of your stance. But I somehow wish you did feel that you had something to lose. I've been through many periods in my life during which I felt that I had nothing to live for. That can change...and for me it definitely has. When I was younger I didn't have much time for children either, and now, through my step-daughter, I have grandchildren who are the icing on a cake I never expected to eat. That's not deriding your decision to not want children; just a personal example that life has unexpected twists and turns. Aside from the heart issues, I hope someday you can find happiness and that life is worth living. Best wishes.
 
Andy I know where your coming from and that's fine. It's just in your original opening statements, I don't want the newbie to be afraid of mechanical or Coumadin. I know you've tried to correct that in another post, but surprisingly, some people just don't read every post. I think we've made it all pretty clear now.

You have to look at Afib as a possibility, not a certainty. It doesn't matter what valve you get, it's more of how much damage is done in your electrical center while the valve is being replaced. This is why it's so unpredictable.
 
ta

ta

Thanks, Wise smith. Ironically enough, I do have a reason now - I'm with the most wonderful girl I've ever met and we love each other to distraction.

But it's made my choices harder - before, I would have wanted to either wake up post op with good news, or not wake up at all. I'm not in the habit of thinking of life as valuable, it's all new to me. I've spent most of the last 10 years thinking "if this gets much worse, I've had it with life", oddly enough not because of heart problems, or at least not in the main.

Now I have to ask "could I keep going if things didn't go to plan, for her sake?". It does tear me up sometimes - I know how much she loves me and I hate to think of her on her own, grieving for me. Yet to live a life with constant reminders of what you never wanted to happen? I don't know. Even without a conscious decsion to end one's life, the state of mind your in does affect your health in so many ways.

That's why I have to at least try the non-mechanical option - otherwise I may end up trapped in something I can't bear.
 
And we all completely support Your choice, no matter what our own personal choice is, or was.
 
i know

i know

This board is a funny thing - it's not just an airing of one's choice, it's almost an extra bodily extension of the decision making process!
 
Andyrdj said:
I've been surprised by people who would keep the mech valve even if a stem cell based alternative was available. Have to watch this space, folks, before you know it an entirely new heart may be available. Who's up for a new set of organs they can start abusing from scratch? :D Only Joking.:rolleyes:

There's a popular saying in the The States: If it ain't broke - don't fix it.

Living a healthy life with my mechanical and no problems would be preferable to me then having an elective major surgery to replace something that is working fine for me. Should my valve begin to show signs of deterioration, or more correctly, should the site my valve is at show signs of deterioration (the valve itself isn't the issue most often.) then I would certainly choose to have this Super Valve we all dream about. Even now, at 47, should my valve go tomorrow I would consider a tissue - but most likely go mechanical. In ten years, I'd probably go tissue. My choice would be made from my desire to have as few surgeries as possible.
 
Andyrdj said:
Yet to live a life with constant reminders of what you never wanted to happen? I don't know. Even without a conscious decsion to end one's life, the state of mind your in does affect your health in so many ways.

That's why I have to at least try the non-mechanical option - otherwise I may end up trapped in something I can't bear.


Most people will say that they have a point at which they wouldn't want to live if_______. Having spent my life around disabled people (because I have a mentally retarded brother who blessed me with that life) I have found that most people can live happy lives far past the point when they originally thought they couldn't.

I had a friend I grew up with, who had muscular dystrophy. He would often draw lines saying "When I get to the point where I can't.... I don't want to live anymore." As his body continued to betray him, he always seemed to persevere past those points and he would set knew markers, which he would then surpass. We had grand times together particularly in our college years. (Ever go out and get drunk with a guy who had to put a straw in a pitcher of beer, because he couldn't hold a glass? He would laugh and say "when there's a will, there's a way.) His body finally gave out on him, shortly after I had my first child. But he never seemed to reach that final line that he couldn't live with. The human will is amazing.

I know people who are quadraplegics due to accidents that live incredible lives. One in particular has friends and family that would say they thought he would have been the one to say "Pull the plug - I don't want this life." because his life had been so perfect and so charmed previous to the accident and he didn't have much tollerance for imperfection. The human will is amazing.

Andy, I'm glad you have an amazing woman that leads you to think beyond yourself. But I'm guessing that the things she sees in you are there regardless of whether she is or not, she just enables you to see them.
 
Okay one last one - regarding food and diet.

Most people may think their diet varies a lot - but we really are creatures of habit when it comes to what we eat.

This week I had major green salad cravings. I had one every night - we're talking the kind with spinach, endive, escarole, arugala and a bit of iceberg for crunch. Topped with poppyseed dressing YUM!!!! Last week my INR was 3.5. Thought for sure after all the green salads I had it would be down quite a bit - nope! 3.8 Maybe the rum and diet coke I had just about each night (I go through phases - next week I'll be back to a glass of red) helped keep it stable?

As you can see, I'm VERY cautious with what I eat and drink.:rolleyes: :rolleyes: :D
 
I think that the INR range in the UK at least is the same for a-fib as for a mechanical aortic valve (ie 2-3). The dosage you have to take varies from person to person, largely due to metabolic rate I think. To reassure anyone worrying about bleeding to death just because they have to take it, read this thread by Al Lodwick (the founder of www.warfarinfo.com):

http://www.valvereplacement.com/forums/showthread.php?t=9684

I think most people here will be just fine bar accidentally taking 6 months supply at once ;) .

Andy, I'm sure your girlfriend thinks you're worth keeping around even if you don't believe it yourself sometimes. I hope that by the time you need your valve replacing, you're more prepared to believe it yourself and will agree that whatever valve keeps you alive to enjoy your life is the right valve for you.

As for banging your head - as Karlynn says, how often do most people bang their head that hard? I remember being in hospital with concussion at the age of 7. Now I'm 27 and haven't hit it that hard since. A few bumps, but unless you're particularly inept at your chosen sport (or you're a boxer or something) I don't think most people have that many occurences of major head bumps.

and the diet thing, virtually makes no difference to your INR as long as it's approximately the same from week to week. If you try the Cabbage Soup Diet one week you could probably expect to see a change, but otherwise I think most people are largely creatures of habit and don't make particularly life-altering diet changes on a frequent basis.
 
Andy, I respect your right to your own decision and wouldnt try to sway you either way, but I am very shocked by your views on warfarin and mechanical valves.

My 6 year old daughter has had a mechanical valve for almost 5 years now and, as a child, I'm sure is much more accident prone then you could ever be and she's doing so well! Yes, shes had a couple of bumped heads but shes ok.
No-one ever guesses she even has a heart condition and I am very certain its not something that makes her feel like a 'patient all the time'. She lives a completely normal life, just happens to take tablets each day and test her blood every so often - which, incidently is on a home testing machine so doesnt even involve extra doctor/hospital trips.
Also, being 6 years old, she can get very fussy over food at times and this too, has never really affected her INR. Chloe has a bit of a coleslaw obsession too and even when shes been on a coleslaw binge shes been fine.

As I said though, I don't want to try and sway your decision either way but would hate people to come on and be afraid of warfarin when reading this thread as it REALLY isnt that bad to deal with.

I can understand your reservations about it all, especially given your history. Can I ask if you have ever taken medication for depression before? You sound very similar to a lot of parents of CHD children I've spoken to in the past and this is not derogatory at all, its very understandable in fact!

Good luck with making your decision
Emma
xxx
 
Don't worry Emma

Don't worry Emma

My generatoin invented "Sex, Drug and Rock and Roll". I was on my second
mech. valve before Andy's mother broke water. I went to Woodstock(didn't stay for the end because I couldn't take the mud and slop), saw the Who, Stones, CTA, 3 Dog night, Jefferson Airplane, Beach Boys, ......etc., etc.
saw my share of sunrises and more embarrassing moments then I care to share. Your sweetheart can look forward to a wonderful, full life! If she is smart, she will soon learn that two beers may make you feel nice, but 20 beers is not 10 times better. Don't let anybody tell you her life is compromised by her valve. I'm sure she will break my Guiness record for the longest surviving valve recipient. Andy doesn't have a shot at that.
 
RCB - did you see Canned Heat at Woodstock? If you did, you saw my friend on bass. He's a curmudgeon now too.:D

I'm sure Chloe will be whooping it up at VR Reunion #30, 40 and beyond.
 
Hi Andy,

The best solution for you is the one that provides mental tranquillity. There is simply no optimal solution in my view. Forget the statistics, valve comparisons and brochures: choose the valve that provides calmness in your head. If this is a tissue valve, then this is your solution to your valve disease.

I'm 31 as well and have to face, in all likelihood, an AVR in the near future. The best solution for me is a durable, robust mechanical valve (St. Jude, ATS, On-X). I'm not considering the warfarin to be a major issue, for we should not forget that the bionic folk around here do great with home testing, providing a much better way to keep the INR solidly within therapeutic levels. It is said that regular home testing reduces the already rare coagulation complications substantially. Structural valve integrity and durability are the main issues that provide the mental tranquillity I need. Warfarin is a distant second.
 
Consider This!

Consider This!

Dear Andy,

I am 35 and am facing a valve replacement on Jan. 20, 2006. The doctor would like to attempt a repair but I don't know if I want that or get the mechanical valve from the get go.

The reason I am posting is that I've read all the posts concerning your choice of valves. You are very absolute on the fact that you feel the Coumadin will tie you down and "make you feel like a patient". I hope you can see that facing these hurdles is not a loss of life, but a new leash on life with minor worldly inconvieniences. You are not going to get younger. This decision will not guarantee that you will not be tied to a pill. You could become diabetic, have hypothyroid, or any other variety of problems that may require medical mangement by yourself. You are only a patient if you alow yourself to be limited by your conditions. Look at Lance Armstrong for instance.

I am not trying to critcize you at all but maybe help you to look at the BIG picture. Your heart is only part of your health. I'm a nurse and I've seen many a heart patient die from totally unrelated illnesses.

Fear not now, for in eternity our existence shall be perfect with God.
Your in my prayers.

Hope this helps,

Heather
 
KARLYNN! I knew I saw you before

KARLYNN! I knew I saw you before

Karlynn said:
RCB - did you see Canned Heat at Woodstock? If you did, you saw my friend on bass. He's a curmudgeon now too.:D

I'm sure Chloe will be whooping it up at VR Reunion #30, 40 and beyond.

It was either skinny dipping in the "Pond", or one of those chicks disappearing beneath the stage with some roady.:D :D

I remember Canned Heat, but not from Woodstock. All I really remember is Country Joe and Richie Havens and all that awful mud and mess. Took two days when I got back to get myself (if you know what I mean)and my car cleaned. To me, the moon landing was a more important event that summer and it still is.
Going to see if I have any Canned Heat LPs (Ross will interpret LPs for you youngins) with your "friend on bass" in the attic. They were one of the greats!:D
 
Some more ramblings...

Apart from the provocative, Patrick-Henry-esque statement (a closet Colonial! a prospective New Hampshirite!), I think the salient issues are your age and the understandably assumptive description of Life with Coumadin. I believe the latter has been addressed vigorously, and largely dispelled.

About the former: your age indicates that you would be subject (with today's technology) to at least three more open-heart surgeries for tissue valves after this one, assuming a standard life span, or perhaps two more and a catheter placement. And you've already had one OHS. There are risks inherent in multiple surgeries that make them a choice you want to limit, if at all possible. And you can't count out the possibility of other major surgeries ever happening in your life (see Nancy's husband). I think this is one of the things that triggers such a strong reaction of concern.

Could there be amazing changes in valve technology over the next ten years? Yes, there could. But realize that if there are, they are unlikely to be implemented in that short a time. It takes seven to ten years to implement a new technology of that sort, depending on where it is in the pipeline. It makes sense to base your choices on those things that have the highest chance of being available when you will need them. There is some chance that a current mechanical valve design, possibly ATS or On-X, will be approved to run on reduced or even aspirin-based ACT in that time.

If you determine that your need to live unfettered by warfarin over the next few years is immutable, then consider holding yourself open to the possibility of moving over to a mechanical when this one wears out. That is one of the reasons I pointed to Moo. He went with a tissue valve the first time, largely to give himself more time for uncluttered personal freedoms (and apparently to party a little longer).

The second time, he went with a mechanical valve for longevity. He has occasionally flabbergasted some members of this board with some of his personal experimentation while on warfarin. Yet, I believe it's valuable to hear the results of personal testing of limits, whether you condone airing them for fear of inappropriate emulation or not. After all, we are also eager to hear the results of those who go beyond the traditionally medically-advised limits to enter marathons and triathalons on warfarin, because we perceive those things as being positive.

About head trauma and warfarin: again, I point to the advanced age of the typical (average-age) valve recipient as being a skewing factor in this. I'm sure you realize that the chances of an intercranial bleed accelerate greatly with age regardless of warfarin use, and ACT aggravates this risk. In this same, expectant-age-related pattern, you will also note that the literature and recovery expectations given to you by the hospital as you leave are generally plainly written with an older audience in mind.

It's not that the warnings don't apply at all, but I personally believe they apply less aggressively to younger recipients. Sonny Bono and the Kennedy scion who died tragically in skiing accidents involving impacts with trees were not on warfarin. One has to wonder in this very protective (and insured) country how long it will be before all skiers are enjoined to wear protective helmets at commercial skiing establishments. The question hangs in the air: are these recommendations all really warfarin-related, or are they partly driven by a desire for all patients to be more safe in their activities? If a "normal" patient asked the doctor if it's safe to ski, wouldn't most doctors in your acquaintance say that they should wear a helmet..?

Philosophically, I agree with many of your sentiments. As I've said, my own decision to go with tissue valves is a result of not dissimilar thought processes. Through this site, my appreciation has grown for the understanding that for the young, Coumadin is not the monster that it is often described. But it is not nothing, either. It would seem unfair to say otherwise. There are some adjustments that go with it, and frustrations.

However, it's also only fair to point out that the mechanics and risks of the tissue solution plainly work out more to the advantage of those who have their first surgery at an older age. If you take those understandings to heart and add them to your thought process, you can balance your decision more accurately. I'm not saying to go mechanical. Or to go tissue. I'm saying that whatever decision you make is best with your eyes as open as you can stand to make them.

About atrial fibrillation: my understanding is that there are some things that affect the likelihood of it:

- People who have mitral valve surgery stand a slightly greater chance of experiencing afib afterwards than those with aortic replacements. Apparently, there is a somewhat more conductively-sensitive area involved in that surgery.

- People who've had more heart surgeries increase their risk. More scar tissue equals a greater chance of developing afib.

- Age is a factor. The younger you are, the less the likelihood of afib after surgery. People above the classic retirement age stand at greatest risk of it. As the vast bulk of people who have valve surgeries fall into that bracket, it seems unlikely that the 30% rate you mention is appropriate to your particular age and situation. Most studies are not adjusted to age-appropriate risk levels.

However, risk factors are just that: statistical possibilities. In real life, they are applied quite unevenly to the universe of OHS recipients. It's important that we all maintain a view of alternatives and possibilities, and premeditate our responses to "what do I do if..." situations that may come up.

If we do not choose, the choices will be made for us. Please deliver me from those who want to do what's best for me, for those who seem most eager to make those decisions so rarely understand what that is...

Best wishes,
 
Hi Bob,

Very well written, that's all I can say. I'm processing your message for days to come.
 
Thoughts from a 32 year old

Thoughts from a 32 year old

Why anyone would want to maximize their likelihood of a 2nd, 3rd, or (lord forbid) a 4th OHS is beyond my realm of comprehension. I would strongly consider comparing the risk of injury due to getting snockered on Coumadin vs. another OHS. If you ask me, I'll roll the dice with Jack and Jim while thinned out on Coumadin.
 
Andy

I can relate to your situation as I was also born with a bicuspid aortic valve, having a replacement three years ago at the age of 33. I too had the same concerns over warfarin in that after surgery I wanted to lead a normal life as possible without the inconvenience of taking medication, I also was concerned that with the mechanical option, even if you take warfarin you are still at risk of developing a clot and my surgeon put this risk at 1 % per year. Due to these concerns I chose the homograft option, originally I wanted the Ross procedure but my valves were not the same size to undertake the swap.

Hopefully according to the surgeon it could last 20 years, and expect that unless any other options are developed that the second surgery will be a mechanical valve.

If I was you I would investigate the Ross procedure and can recommend a good surgeon in London that has undertaken a number of these procedures.

Good luck with your decision.

Neal
 
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