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[Hoist!]

You're very active. You ride a motorcycle, and you like to ride it very fast! You don't shy away from other dangerous things either. You're diagnosed with Cardiomyapathy, which is weak muscles in the heart, also known as a black spot. The blood pools and clots around the black spot, which can get into an artery and cause a heart attack. You're prescribed to take 12.5 mg of Coumadin, Alpha Inhibitors, Beta Blockers, and Cholesterol med, daily for the rest of your life. Coumadin is a blood thinner. You're 53 and facing taking this chit for quite sometime (hopefully). First thing you're told is to stop riding motorcycles because of the risk of bleeding out in the event of an accident. You immediately respond without hesitation, the she has a better chance of seeing God, than seeing you stop riding motorcycles. She says, "Please be very careful."

Then you start thinking. "Taking this chit everyday puts you at risk everyday!" Walk off the curb and get hit by a bus! Who knows? Chit happens and when your number's called, it's over! Maybe stop taking all those pills and take your chances. But with the black spot, where the blood pools and clots, it puts you at great risk for a heart attack. Very risky to stop the medication. WTF?

Then you say to yourself "Do I have any other alternatives?" "How about cracking the chest open and doing open heart surgery to repair the weak muscle?" You don't know if that's even a possibility, but sure seems like it's worth the risk to fix it instead of the medication alternative, which is forever.

What would ya'll do? I'm meeting the Dr. next week to discuss if there are surgical ways to fix this. Most people think I'm nuts to consider open heart surgery, when it can be maintained with blood thinners. I look at it as there's a risk with surgery of dropping dead but it can fix you vs. a risk of dropping dead everyday from some minor trauma to most people, but being on that blood thinner chit, would cause you to bleed out. So they want to restrict your life and be ever so cautious instead of living!!!

I'm determining whether surgery is a viable option. Whether they recommend it or not is irrelevant! If it can be fixed, I want it fixed, so I can move on with my life and not have this hanging over my head every day. Binx supports any solution I choose to take. Am I crazy for wanting to get my chest cracked open to fix it rather than being on Coumadin the rest of my life? I'm interested in what others with my passion for motorcycles would do in my shoes!

Thank you all for reading this and offering any of your personal feelings about this subject. I feel great and am not looking for sympathy by writing this. I just want to gage how good or bad my thought process is by preferring surgery over medication for life.

Hoist!

[grc]

Howie,

It's really tough to give advice on something like this.  All I can offer is to approach it the same way you did with your engine; find a mechanic (cardiologist) that you can trust completely and who will spend the time to go through all the options with you.  Whatever you eventually decide, be assured we will all be pulling for you.

Jerry

[Hoist!]

Howie,

It's really tough to give advice on something like this.  All I can offer is to approach it the same way you did with your engine; find a mechanic (cardiologist) that you can trust completely and who will spend the time to go through all the options with you.  Whatever you eventually decide, be assured we will all be pulling for you.

Jerry

Thanks Jerry. I'm meeting my Cardiologist on Tuesday to discuss this. If she tells me there is no surgical alternative, I'll need other opinions to confirm that. If it's true, I guess I'm stuck with the pills. If she tells me it can be surgically repaired, I'll have a decision to make. Then I'll probably have to fight w/ the Factory (Insurance Company) who will probably only want to keep paying for the pills under the w.....ty! I wasn't looking for advice, as much as wondering what some of you would do should you be faced with this. Thanks again.

Hoist!

[SBB]

Howie,

It's really tough to give advice on something like this.  All I can offer is to approach it the same way you did with your engine; find a mechanic (cardiologist) that you can trust completely and who will spend the time to go through all the options with you.  Whatever you eventually decide, be assured we will all be pulling for you.
Jerry

Hoist

As I have said many times in the past on this site,
Listen to Jerry, his advice is spot on.
In this case, I again agree with him.

Now
Use that same passion you have for bikes to research an answer to this issue.
The pills will always be the backup plan. And I like a backup plan!
But use that energy you have to explore any and every other option that's possible.
For me, your like a fungus, you have grown on me and us and I think the rest of the members here will agree with that. Research, research, research and then do some more is your best option at this time. That's the approach I would take. You can do pills at anytime so find that better answer and we all will be grateful when you do. If I could help I would but this isn't sticks and bricks.

We will keep you in our prayers!

L&R


S
  /
    B

[SneakyPete]

Howie,

I take coumadin myself ever since I suffered a blood clot in my leg which moved to my lungs.  Almost bought the farm due to a heriditary blood condition I didn't know I had until almost too late.  Pills are funny things and sometimes it is difficut to regulate the proper dosage, particulary coumadin.  I have to go to the lab to have my blood drawn every other week to monitor my PT level to make adjustments.  Further, if I ever need any kind of surgery, yu ned to come off the drug, take shots, then go back on.  The bottom line here is that if there were a surgical procedure to cure this thing once and for all I would do it instead of popping pills.

[Seegarsmkr]

Howie,
I am not a cardiologist but am a nurse...I don't think that there is a surgical fix for cardiomyopathy.  Coumadin is a tricky drug...they monitor it so you don't spontaneously bleed but there is that chance that if you fall or injure your self then...

I have a question for you, brother, would Howie be Howie if he wasn't two wheels up?!!!  If you answer this question no, then it is a simple dilemma...keep riding.  If you will be Happy being Howie without...try and see...I doubt that it is an option for you tho.  I wouldn't play tackle football on coumadin or my favorite, ice hockey but riding has inherent risks to begin with (just start reading rider down), if there is anything such as "extra caution" it should be exercised.  Don't think I would give it up...just exercise all of the precautions.  You have to be YOU...don't give up yourself or your IDENTITY until they take it from you.  My $.02

Seegarz

[Hoist!]

Thanks a lot Chip! Binx and I are researching this on our own as well as meeting w/the Dr. to discuss any of the options. I need now to learn more about this as I learned all about HD FI/ECM's in my months here. This site has some brilliant people here. People whose opinions I respect greatly. I'm really looking for some personal opinions on what others who have similar passions as I would do. I would never ask anyone to tell me what I should do. After researching it and weighing my options, I'll make an informed decision between Binx and myself. Part of my evaluation is to gage what others that understand my lifestyle would do. My decision will be based on many factors. I'm just curious what people like me would do. People who can't comprehend this lifestyle are useless to discuss this with, as I found out. But those people also can't understand why I ride a motorcycle in the first place! those opinions are meaningless to me! Thanks again!

Hoist!

[HWYMAN1]

Howie,
Jerry has some sage advice on listening to your cardiologist. They can give you all your medical options. you do need to find out what type of cardiomyopathy you have. You may also need an opinion from a cardiothoracic surgeon ( the guy who actually does your surgery.) Some forms of cardiomyopathy are progressive dependent on cause. The ace inhibitors and beta blockers allow for maximized heart pumping, and if the heart output ( ejection fraction) is stable the medical options are the least risky. The surgical options dependent on current "healthiness" of your heart. If it involves the entire heart muscle and is progressive the only kind of surgery is heart transplant. This obviously has its own set of problems with immunosuppressive medications. While coumadin may be a pain to take and have risks of bleeding, riding you scoot is not intended as a contact sport, and as such riding in and of itself is more dangerous than driving a car, the ultimate risk for bleeding is the same no matter what the cause of the accident.  I guess what I am trying to say is that taking the coumadin may not be as bad as you think, do your research and listen to the experts ( your cardiologist) they will give the best plan and options.  John

[2006_CVO_HD]

Hoist......

We'll be behind 110% with whatever your decision you make. I have a friend that is a truck driver and he has been on Coumadin for a few years. He has blood drawn to check the medication levels regularly. He has not had any problems due to the medication. There are definitely positive thoughts and prayers headed your way from Middle Tennessee!!!!!!  

[Special_Ed]

Howie,
First off, sorry that you even have to make this decision but seeing that you have to.  I feel similar to Seegarz. If you get to a point where you are no longer the person you want to be and are unable to express yourself as you wish, then the options become heavily weighted.

You have been riding a long time and it is something that has became part of you. I personally feel very strongly about quality of life. I would rather have good years than long years.

There are of course are the other factors you’re considering, Binx, kids, family, but you must consider yourself too. Riding the couch every weekend isn’t what will keep you, you.

Donna told me a couple years ago, “sometimes it’s okay to be selfish, it’s your life”. Keep searching out doctors and information till you find one that will help you live the lifestyle you want.

Take care my friend and keep us posted,
Ed

[Hoist!]

Howie,
I am not a cardiologist but am a nurse...I don't think that there is a surgical fix for cardiomyopathy.  Coumadin is a tricky drug...they monitor it so you don't spontaneously bleed but there is that chance that if you fall or injure your self then...

I have a question for you, brother, would Howie be Howie if he wasn't two wheels up?!!!  If you answer this question no, then it is a simple dilemma...keep riding.  If you will be Happy being Howie without...try and see...I doubt that it is an option for you tho.  I wouldn't play tackle football on coumadin or my favorite, ice hockey but riding has inherent risks to begin with (just start reading rider down), if there is anything such as "extra caution" it should be exercised.  Don't think I would give it up...just exercise all of the precautions.  You have to be YOU...don't give up yourself or your IDENTITY until they take it from you.  My $.02

Seegarz

Thanks Seegar! Your first sentence is not encouraging, but things are what they are! If that's the case, I either keep taking this chit, or stop and just take my chances. I didn't even think about stopping riding when it was suggested. As I said earlier, I told her "she had a better chance of seeing God than me stopping riding. I'd stop those pills before I stopped riding". And I ride one way. WFO! If I'm not, I'm not me either. I've taken those chances my entire life, with or without those pills. But it freaks me out a little taking a pill to help one problem, knowing that same pill can be the cause of dropping dead because of bleeding out. But I appreciate your medical insight and honesty and will never stop doing what I love!

Hoist!

[Hoist!]

Howie,
Jerry has some sage advice on listening to your cardiologist. They can give you all your medical options. you do need to find out what type of cardiomyopathy you have. You may also need an opinion from a cardiothoracic surgeon ( the guy who actually does your surgery.) Some forms of cardiomyopathy are progressive dependent on cause. The ace inhibitors and beta blockers allow for maximized heart pumping, and if the heart output ( ejection fraction) is stable the medical options are the least risky. The surgical options dependent on current "healthiness" of your heart. If it involves the entire heart muscle and is progressive the only kind of surgery is heart transplant. This obviously has its own set of problems with immunosuppressive medications. While coumadin may be a pain to take and have risks of bleeding, riding you scoot is not intended as a contact sport, and as such riding in and of itself is more dangerous than driving a car, the ultimate risk for bleeding is the same no matter what the cause of the accident.  I guess what I am trying to say is that taking the coumadin may not be as bad as you think, do your research and listen to the experts ( your cardiologist) they will give the best plan and options.  John

Holy crap John! That was a mouthful! I knew my best research would start on this very site! You people are awesome! I agree with your assessment of the risks on the Coumadin, and it doen't matter what type of accident is putting you in jeopardy. But what about compared to the risks of not taking it at all? That's always an option too, I guess. Not a good option, as I saw the black spot and the pooling blood around it in the Angiogram. I know they're not FOS about my condition. But somehow I always believe there has to be some alternative. Just what that is, I'm not sure. But if there is, I'll find out about it. Thank you so much for your input John!

Hoist!

[VAZHOG]

You're very active. You ride a motorcycle, and you like to ride it very fast! You don't shy away from other dangerous things either. You're diagnosed with Cardiomyapathy, which is weak muscles in the heart, also known as a black spot. The blood pools and clots around the black spot, which can get into an artery and cause a heart attack. You're prescribed to take 12.5 mg of Coumadin, Alpha Inhibitors, Beta Blockers, and Cholesterol med, daily for the rest of your life. Coumadin is a blood thinner. You're 53 and facing taking this chit for quite sometime (hopefully). First thing you're told is to stop riding motorcycles because of the risk of bleeding out in the event of an accident. You immediately respond without hesitation, the she has a better chance of seeing God, than seeing you stop riding motorcycles. She says, "Please be very careful."

Then you start thinking. "Taking this chit everyday puts you at risk everyday!" Walk off the curb and get hit by a bus! Who knows? Chit happens and when your number's called, it's over! Maybe stop taking all those pills and take your chances. But with the black spot, where the blood pools and clots, it puts you at great risk for a heart attack. Very risky to stop the medication. WTF?

Then you say to yourself "Do I have any other alternatives?" "How about cracking the chest open and doing open heart surgery to repair the weak muscle?" You don't know if that's even a possibility, but sure seems like it's worth the risk to fix it instead of the medication alternative, which is forever.

What would ya'll do? I'm meeting the Dr. next week to discuss if there are surgical ways to fix this. Most people think I'm nuts to consider open heart surgery, when it can be maintained with blood thinners. I look at it as there's a risk with surgery of dropping dead but it can fix you vs. a risk of dropping dead everyday from some minor trauma to most people, but being on that blood thinner chit, would cause you to bleed out. So they want to restrict your life and be ever so cautious instead of living!!!

I'm determining whether surgery is a viable option. Whether they recommend it or not is irrelevant! If it can be fixed, I want it fixed, so I can move on with my life and not have this hanging over my head every day. Binx supports any solution I choose to take. Am I crazy for wanting to get my chest cracked open to fix it rather than being on Coumadin the rest of my life? I'm interested in what others with my passion for motorcycles would do in my shoes!

Thank you all for reading this and offering any of your personal feelings about this subject. I feel great and am not looking for sympathy by writing this. I just want to gage how good or bad my thought process is by preferring surgery over medication for life.

Hoist!

Do you mean This?

http://www.americanheart.org/presenter.jhtml?identifier=4468


Your Choice is to take the meds if you choose to live or don't take them and live as you have for the time that is left. That is the modern choice of living longer thru chemistry.

[Hoist!]

Hoist......

We'll be behind 110% with whatever your decision you make. I have a friend that is a truck driver and he has been on Coumadin for a few years. He has blood drawn to check the medication levels regularly. He has not had any problems due to the medication. There are definitely positive thoughts and prayers headed your way from Middle Tennessee!!!!!!  

Thanks, I have my Coumadin level checked monthly and have been maintaining the same dose now for about 6 months. I don't feel any different today than before I was diagnosed with this. So how I feel was never an issue. This was uncovered at a routine physical, during the stress test. Then all hell broke loose! Angiogram in the hospital, getting the medication adjusted and the numerous trips to the Dr. All this infringes on my lifestyle. But I'm following along with the program for now. How do you listen to someone that calls the one thing in my life that I love more than anything, besides my family of course, a 'donorcycle?! These people will never understand me or my lifestyle. I know that I can continue this medication, and as Chip said, it'll always be there. But I'd like to find an alternative, if there is one.

Hoist!

[Ceej]

Find a Cardiologist that rides!

Besides that, I would have to ride, it may be a lil selfish to some, but it would be honesty to myself. I remember reading an interview with Dale Earnhart where some asked what he thought about ....if a tragic racing accident took his life...he responded that dying working on his farm would be tragic, but in a racecar wouldn't be tragic, its part of the game he loves, part of what makes it what it is, and who he is.

The risk is there everytime we get on a bike.

That said, we all have to ride our own ride, do what you got to do, i'd ride and look for any alternatives - best wishes