New member would like to introduce himself (AVR soon).

[Chuck_S]

I would like to introduce myself, my name is Chuck and this August I will turn 38. Last year (June 04) I went in to a new general Doctor for back pain, he also determined that it had been years since my last physical. He asked about my health in general (it had been great until the back pain), but I was aware that I was diagnosed with a Heart murmur 4 years ago (Echo preformed and was told to change nothing). He listened to my Heart and scheduled an Echo later that week. The next day my general Doctor called and told me that I need to see a Cardiologist.

The Cardiologist told me that I have a leaky Aortic valve and it is causing my left ventricle to become enlarged, Ejection Fraction was at 60%. Basically he said that this valve will require treatment and I should hope that things do not change because eventually (10 years or so) the technology will exist to repair Aortic valves. He wanted me to visit every 6 months for a new Echo.

December 2004 my LV continued to show signs of increased size (EF @ 55%), the cardiologist asked me many different ways how I was feeling. Was I tired, short of breath ect. I did not have these feelings, he said let him know if things change and he will see me for a new Echo in 6 months.

Early June 2005 I had my last Echo. My Ejection fraction has gotten a bit worse (50-55%), and there are signs of depressed heart function from the leaky valve. Here is the kicker; I have begun to feel more winded than usual. I had to stop playing tennis for an unusual amount of heavy breathing. I shared this with my Cardiologist, and he shared that based on my Echo's that this is to be expected. He asked me to look at my schedule, because he recommends AVR (within 1-3 months). Honestly, I think I will go in early July.

Yesterday I met with a highly recommended surgeon; he like the Cardiologist recommends a mechanical valve. I have family that is on Coumidan, and I really do not like limiting my life's choices while on this drug. I have been searching all over the place trying to find drawbacks to tissue and mechanical valves. I am thankful for finding such a valuable website.

Just last week I stuck myself changing a watchstrap; lots of blood. From time to time I cut myself shaving or get paper cuts. I enjoy the 2-3 glasses of wine on occasion, and some day I may want to take up triathlons again. It is really daunting learning about the change of lifestyle required while on Coumadin. I really wonder if the tissue valve is a better choice for me.

I am sure I will have many questions near term; I appreciate all your kind support for your forum?s members.

Sincerely,
Chuck S.

 

[Ross]

I have family that is on Coumidan, and I really do not like limiting my life's choices while on this drug. Chuck S.

Hi Chuck and welcome to our home and hopefully, your new one as well.

Before we start, can you please explain to me what exactly you mean by limiting lifes choices because of being on Coumadin? Not trying to sound stupid, but most people have been fed a line of bull and old school thinking which leads them to limit themselves, not the drug.

Basically, I want to dispell all of the B.S. you've heard or may be thinking. I've been on it for almost 4 years now and it has in no way affected a thing I do. I cut myself up all the time, shaving, working on mechanical projects, you name it. I simply bleed a little longer, not a big deal. There is nothing you mention above to say that coumadin would hamper your life style. You can still do all those things.

 

[TjCarpenter]

Something to consider...

Something to consider...

I would like to introduce myself, my name is Chuck and this August I will turn 38. Last year (June 04) I went in to a new general Doctor for back pain, he also determined that it had been years since my last physical. He asked about my health in general (it had been great until the back pain), but I was aware that I was diagnosed with a Heart murmur 4 years ago (Echo preformed and was told to change nothing). He listened to my Heart and scheduled an Echo later that week. The next day my general Doctor called and told me that I need to see a Cardiologist.

The Cardiologist told me that I have a leaky Aortic valve and it is causing my left ventricle to become enlarged, Ejection Fraction was at 60%. Basically he said that this valve will require treatment and I should hope that things do not change because eventually (10 years or so) the technology will exist to repair Aortic valves. He wanted me to visit every 6 months for a new Echo.

December 2004 my LV continued to show signs of increased size (EF @ 55%), the cardiologist asked me many different ways how I was feeling. Was I tired, short of breath ect. I did not have these feelings, he said let him know if things change and he will see me for a new Echo in 6 months.

Early June 2005 I had my last Echo. My Ejection fraction has gotten a bit worse (50-55%), and there are signs of depressed heart function from the leaky valve. Here is the kicker; I have begun to feel more winded than usual. I had to stop playing tennis for an unusual amount of heavy breathing. I shared this with my Cardiologist, and he shared that based on my Echo's that this is to be expected. He asked me to look at my schedule, because he recommends AVR (within 1-3 months). Honestly, I think I will go in early July.

Yesterday I met with a highly recommended surgeon; he like the Cardiologist recommends a mechanical valve. I have family that is on Coumidan, and I really do not like limiting my life's choices while on this drug. I have been searching all over the place trying to find drawbacks to tissue and mechanical valves. I am thankful for finding such a valuable website.

Just last week I stuck myself changing a watchstrap; lots of blood. From time to time I cut myself shaving or get paper cuts. I enjoy the 2-3 glasses of wine on occasion, and some day I may want to take up triathlons again. It is really daunting learning about the change of lifestyle required while on Coumadin. I really wonder if the tissue valve is a better choice for me.

I am sure I will have many questions near term; I appreciate all your kind support for your forum?s members.

Sincerely,
Chuck S.

Hello Chuck,

Welcome... I am 45 active and have a bad aortic valve. That said, I would not even consider a mechanical valve because of my lifestyle... I am a carpenter and getting cut from time to time is pretty much a guarantee. I am having a wonderful tissue valve (Medtronics Freestyle) put in in a few days... I will be looking at dealing with it again at some point in the future... How far in the future? No on can say for sure... Average is 15 to 20 years... At that point... many things WILL have advanced. I am confident that the technology WILL be there when I get there and I will have lived without all that coumadin. That is only my story... you write your story, not your surgeon. Think long and hard and make your choice.

Keep me posted, I will be recovering nicely next week ( See how confident! )

PS I'm really a chicken Sh#t and shaking in my boots from time to time... I'm just trying to get a grip on it and remain positive!

Regards,

Tom

 

[twinmaker]

Chuck, my name is Linda or otherwise known on this site as Twinmaker. WELCOME!! I have had two open heart surgeries, the last of which resulted in a mitral valve replacement. I have a St. Jude mechanical. That surgery was done in 1981 when I was 29 years old. I have been on Coumadin all that time. I can honestly say that I haven't really changed anything that I was doing before I started on the Coumadin. I play tennis, I ride my bike, etc. When I started on the Coumadin, the only thing that the doctor told me not to do was to sky dive or play football (heavy contact sports)...not a problem for me. I think he was trying to be funny! I would guess that most of us here that take Coumadin don't really think about the things that we shouldn't do because as Ross said, we all live pretty normal lives. In other words, there's not much that we can't do. I can honestly say that after all this time, I've never stopped and asked myself, "Should I do this since I'm on Coumadin?" As far as the choice between the tissue vs. mechanical valve, that's something you'll have to decide. There are a lot of folks on this site that can give you some guidance and answer any questions you might have. My mechanical valve has served me well for almost 24 years. Again, welcome to the group!

 

[Ross]

TJ I have two friends that are carpenters and on Coumadin. They've cut themselves nearly daily and they still do their thing!

 

[TjCarpenter]

Less is more...

Less is more...

TJ I have two friends that are carpenters and on Coumadin. They've cut themselves nearly daily and they still do their thing!

Hi there,

I hear what you are saying and I guess there is the rub.... to pig or not to pig... that is the question!

I am a bit of a minimalist (spelled right?) I want to keep it simple and not have the need for the medication... Am I right or wrong? Who knows... We shall hopefully find out in time (Lots of time!)

TjC

 

[Karlynn]

My mechanical valve has served me well for almost 24 years.

I just love to hear this kind of report!

Chuck, we have many athletes here who are on Coumadin. We have marathoners, triathletes, skiers, sailors etc.

Let me ask you this - if a doctor said you had diabetes, would you be as concerned about doing the daily testing and injection of insulin, as you are at the thought of taking Coumadin? Most people are not as concerned because they hear more about diabetics, see the commercials portraying normal lifestyles and most likely know people who manage their diabetis successfully. Most Coumadin users, just as most diabetics, manage to live a very normal life. The main difference is that we don't have to test ourselves daily. For most, monthly testing is the norm, I test weekly.

Coumadin is a serious drug - but it is a life-saving drug. We spend a lot of time here dispelling misinformation (otherwise known as crap ) that doctors and other medical professionals have told people.

Valve choice is a personal one and should be based on many factors. However, should you choose to go mechanical, we have, as one of our members, one of the worlds best experts on Coumadin, Al Lodwick. He knows more than most doctors. His web site is full of information www.warfarinfo.com

 

[Ross]

Hi there,

I hear what you are saying and I guess there is the rub.... to pig or not to pig... that is the question!

I am a bit of a minimalist (spelled right?) I want to keep it simple and not have the need for the medication... Am I right or wrong? Who knows... We shall hopefully find out in time (Lots of time!)

TjC

I just wanted you to know that it's still possible, not that you should or shouldn't, it's your call. My big thing is, people should only do this surgery one time if it can be helped. Too many folks come in here thinking that they'll just up and get a mechanical later when their tissue wears out. Well not everyone tolerates surgery well. Some never make it out. Too big of a gamble for me.

 

[jeffp]

I can only say "ditto" to Karlynn's post (#7). I was perfectly healthy with only a trace murmur of 40 years, up until the day when my mitral valve shredded apart. I discussed with the surgeon that if a repair didn't work to go with a mechanical valve. Personally, I didn't want to go through major surgery a second time down the road (I didn't even want to the first time!). As my recent event told me, you never know what life brings down the road. If the only thing guiding your decision is wether or not you will need to take pills forever, you still may. I wound up going from no meds to 6! I hate it, but "normal" changes. Its not infrequent that pig and cow valvers still need anticoagulation post op. I'm a physician myself and thought I knew what's what with coumadin. Boy was I wrong, I learned more in the past two months than I ever knew all the years before. You become your own personal coumadin expert. Its still a personal choice and not easy to change your mind, although we have some here that have switched both ways. I hope I never have to have this one replaced, but if I do and I'm like 80 years old, then I'd go tissue, but for now at 50, I click.
Good luck, do well, heal uneventfully and however you choose, it's the right choice for you.

 

[mmarshall]

being 38 and it sounds like you have caught it early....i would look into the ross procedure. given your age and lifestyle. i agree with everyone that coumadin may not be as bad as they make it out to be but at the same time...i am 31 and really did not want to deal with it. so i went into surgery 3 1/2 weeks ago with the intent to do the ross procedure and have a medtronics freestyle aortic root heart valve as my backup. turns out that i waited too long...even though i did not have any symptoms....my aorta was too enlarged and it was better in my case to go with this tissue valve. i saw 3 surgeons and the one that did the surgery was the only one to offer this latest tissue valve. the down side is that it has only been used for the last 12 years but the upside is that the results have been great and they are expecting to get 15 to 20 years out of it...if not longer. i think in the next 10 to 20 years they will be replacing valves using the cath method so i took my chances...and by the way...no matter what valve you choose...it is a risk. my parents have a friend that is 47 years old...had a mechanical put in 9 years ago and they are talking about replacing it in the next couple of months. so you just have to be comfortable with your decision and go with it...if you are healthy and in good shape...with no other health problems...this surgery is not that bad. my surgery was 3 weeks ago this past tuesday...and i starting going back to work for about 6 hours a day and driving when there is no traffic...dallas traffic sucks...lol...actually im hard at work typing this right now...lol but i have no pain at all....just a little stiff...but hey...it takes time for the sternum to heal. if you have any questions just let me know.

 

[Ross]

Another little warning. Do not base your decision on what the future technology may or may not hold. Think of the here and now and deal with it this way. I'm not trying to dash your hopes, but I cannot emphasize enough, you do not want to do this more then once if it can be helped.

 

[Tom F.]

I would echo the comment to at least look at a Ross Procedure. You might also look into a possibility of a valve repair. While they are more common with a normal aortic valve and an ascending aortic aneurysm, there are some doctors at major heart center hospitals that are performing repair procedures.

 

[MyAorticValveisKaPut]

Chuck I got the SAME thing you do. Im 28.

I am looking at the options and can't beleive how far back in technology we are that there isnt anything sure fire and 100% effective. Its so 50-50.

I dont want coumadin.. Im praying the Cryolife pig valve thing is the answer for me... no coumadin.. and at least 20 yrs ( i hope) of baught time until something better comes along.

What do you all think?

 

[perkicar]

Chuck I got the SAME thing you do. Im 28.

I am looking at the options and can't beleive how far back in technology we are that there isnt anything sure fire and 100% effective. Its so 50-50.

I dont want coumadin.. Im praying the Cryolife pig valve thing is the answer for me... no coumadin.. and at least 20 yrs ( i hope) of baught time until something better comes along.

What do you all think?

For you both--there is only one thing that is sure fire and 100%--that's what will happen if you don't get your valves replaced. It's a big procedure, alot to comprehend and scary as h***. I'm a two time cancer survivor and having an AVR scared me worse. As I told my surgeon (I'm a nurse), I've watched OHS and quite frankly the thought of being on the receiving end scared the crap out of me. The surgery and hospital recovery was really not that bad.
I would much rather have a mechanical valve that "should" last forever (nothing is guaranteed, remember) and not have to have a second operation and recover, even if I have to take coumadin. As other's have said, it's a matter of remembering to take your meds (you'll be on other pills as well, so it's not like it's the only drug you'll take) and doing the monitoring. I'm hoping to do the home monitoring too. I already do finger sticks for my blood sugar so it's not like I'm not already poking myself. You have to make the choice that's right for you--but be sure to be as objective as possible when comparing your options. If you do a tissue valve you WILL need another operation. it's just a matter of when.

 

[bvdr]

Hi there,

I hear what you are saying and I guess there is the rub.... to pig or not to pig... that is the question!

I am a bit of a minimalist (spelled right?) I want to keep it simple and not have the need for the medication... Am I right or wrong? Who knows... We shall hopefully find out in time (Lots of time!)

TjC

Tom, be prepared for the possibility that it is possible that you end up with a tissue valve and as an unwanted byproduct of surgery end up with atrial fib and fine yourself on coumadin anyway. ON the other hand, sometimes a person with a mechanical valve ends up back on the table for more heart surgery. Neither scenario is expected but both do happen more than we would expect.

 

[hunniheart]

Hi, I'm Lynn, and I'm 51. I just had an aortic valve replacement on 6/17. I was told that for people in their 30's, they recommend the mechanical valve, and for people in their 70's, they recommend the tissue valve. I am in the middle, and they left it up to me. After speaking with several doctors and nurses and researching Coumadin, I chose the tissue valve. I do not want to be on Coumadin for the rest of my life, and I'm hoping that in 20 years or so, when I would need another AVR, the medical technology will have improved so that the procedure will be easier. I had the surgery on 6/17 (last Friday), and I was home on 6/21 (Tuesday). I had severe aortic stenosis with the aortic valve around 0.4 cm, and it was critical and life threatening for me. I had only found out 3 days earlier that I even had the condition! As for the type of valve, as they say, there is no one right choice for everyone. Good luck!

I would like to introduce myself, my name is Chuck and this August I will turn 38. Last year (June 04) I went in to a new general Doctor for back pain, he also determined that it had been years since my last physical. He asked about my health in general (it had been great until the back pain), but I was aware that I was diagnosed with a Heart murmur 4 years ago (Echo preformed and was told to change nothing). He listened to my Heart and scheduled an Echo later that week. The next day my general Doctor called and told me that I need to see a Cardiologist.

The Cardiologist told me that I have a leaky Aortic valve and it is causing my left ventricle to become enlarged, Ejection Fraction was at 60%. Basically he said that this valve will require treatment and I should hope that things do not change because eventually (10 years or so) the technology will exist to repair Aortic valves. He wanted me to visit every 6 months for a new Echo.

December 2004 my LV continued to show signs of increased size (EF @ 55%), the cardiologist asked me many different ways how I was feeling. Was I tired, short of breath ect. I did not have these feelings, he said let him know if things change and he will see me for a new Echo in 6 months.

Early June 2005 I had my last Echo. My Ejection fraction has gotten a bit worse (50-55%), and there are signs of depressed heart function from the leaky valve. Here is the kicker; I have begun to feel more winded than usual. I had to stop playing tennis for an unusual amount of heavy breathing. I shared this with my Cardiologist, and he shared that based on my Echo's that this is to be expected. He asked me to look at my schedule, because he recommends AVR (within 1-3 months). Honestly, I think I will go in early July.

Yesterday I met with a highly recommended surgeon; he like the Cardiologist recommends a mechanical valve. I have family that is on Coumidan, and I really do not like limiting my life's choices while on this drug. I have been searching all over the place trying to find drawbacks to tissue and mechanical valves. I am thankful for finding such a valuable website.

Just last week I stuck myself changing a watchstrap; lots of blood. From time to time I cut myself shaving or get paper cuts. I enjoy the 2-3 glasses of wine on occasion, and some day I may want to take up triathlons again. It is really daunting learning about the change of lifestyle required while on Coumadin. I really wonder if the tissue valve is a better choice for me.

I am sure I will have many questions near term; I appreciate all your kind support for your forum?s members.

Sincerely,
Chuck S.

 

[MarkU]

Spent my morning roofing and framing at Habitat for Humanity and then stopped to do a 1700 yd swim workout on the way home to help get ready for my next triathlon in four weeks. Planning a 25-30 mile bike ride tomorrow.

Oh yeah, almost forgot, I got a St. Jude mechanical valve four and a half years ago at age 47, and have been on Coumadin ever since. Really hampers my lifestyle...

The one thing I do know is that I don't want to face the prospect of repeat surgeries (with ever increasing risk) to replace a worn out porker valves. One OHS was enough for me.

Just my $0.02.

There's no "right" answer. Everyone has to do what they feel is right for them and then be willing to accept the consequences.

Mark

 

[miles]

avr, coumadin, carpenter

avr, coumadin, carpenter

hi Chuck and TJcarpenter. My name is Miles, I am a carpenter and have been for many years. I have had a St. Judes mech aortic valve for over five years as well as a dacron ascending aorta and am on warfarin..Not a problem , none what so ever.I get cuts and bangs all the time, no sweat really

 

[901]

Spent my morning roofing and framing at Habitat for Humanity and then stopped to do a 1700 yd swim workout on the way home to help get ready for my next triathlon in four weeks. Planning a 25-30 mile bike ride tomorrow.

Oh yeah, almost forgot, I got a St. Jude mechanical valve four and a half years ago at age 47, and have been on Coumadin ever since. Really hampers my lifestyle...

The one thing I do know is that I don't want to face the prospect of repeat surgeries (with ever increasing risk) to replace a worn out porker valves. One OHS was enough for me.

Just my $0.02.

There's no "right" answer. Everyone has to do what they feel is right for them and then be willing to accept the consequences.

Mark

I haven't made the summit, yet! But, I'd like to second your thoughts. 1 OHS is enough for me, even though I haven't experienced one, yet! There seems to be a lot of alternatives "out there". My surgeon is planning to install a St. Judes with the aortic graft pre-attached (Bentall Procedure). While the newer choices offer many "may" improve this or that, I'm comfortable with the surgeons solution that the St. Judes and the graft will outlast the rest of me.
I'm still in the waiting room, until Tuesday, but I've tried to come up with a better solution and I can't. I think getting my sternum cut open is far more traumatic than taking rat poison forever. I am willing the Dr. to get "it" right the first time! I, absolutely, don't want any second or third tries inside my chest!

 

[DebbiN]

Coumadin

Coumadin

I would like to introduce myself, my name is Chuck and this August I will turn 38. Last year (June 04) I went in to a new general Doctor for back pain, he also determined that it had been years since my last physical. He asked about my health in general (it had been great until the back pain), but I was aware that I was diagnosed with a Heart murmur 4 years ago (Echo preformed and was told to change nothing). He listened to my Heart and scheduled an Echo later that week. The next day my general Doctor called and told me that I need to see a Cardiologist.

The Cardiologist told me that I have a leaky Aortic valve and it is causing my left ventricle to become enlarged, Ejection Fraction was at 60%. Basically he said that this valve will require treatment and I should hope that things do not change because eventually (10 years or so) the technology will exist to repair Aortic valves. He wanted me to visit every 6 months for a new Echo.

December 2004 my LV continued to show signs of increased size (EF @ 55%), the cardiologist asked me many different ways how I was feeling. Was I tired, short of breath ect. I did not have these feelings, he said let him know if things change and he will see me for a new Echo in 6 months.

Early June 2005 I had my last Echo. My Ejection fraction has gotten a bit worse (50-55%), and there are signs of depressed heart function from the leaky valve. Here is the kicker; I have begun to feel more winded than usual. I had to stop playing tennis for an unusual amount of heavy breathing. I shared this with my Cardiologist, and he shared that based on my Echo's that this is to be expected. He asked me to look at my schedule, because he recommends AVR (within 1-3 months). Honestly, I think I will go in early July.

Yesterday I met with a highly recommended surgeon; he like the Cardiologist recommends a mechanical valve. I have family that is on Coumidan, and I really do not like limiting my life's choices while on this drug. I have been searching all over the place trying to find drawbacks to tissue and mechanical valves. I am thankful for finding such a valuable website.

Just last week I stuck myself changing a watchstrap; lots of blood. From time to time I cut myself shaving or get paper cuts. I enjoy the 2-3 glasses of wine on occasion, and some day I may want to take up triathlons again. It is really daunting learning about the change of lifestyle required while on Coumadin. I really wonder if the tissue valve is a better choice for me.

I am sure I will have many questions near term; I appreciate all your kind support for your forum?s members.

Sincerely,
Chuck S.

I take 14 mg of Coumadin every night. I do not limit the kinds of foods I eat, I still drink in moderation and I still rough house with my dogs. I havent had to change a thing!