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[VaEagle]

Hi Hoist,
I missed this thread earlier but just got through all the posts. You are right about lots of great info from this extended family.
I know by the time you have to make a decision you will be the best informed and knowledgable patient those doctors have seen in a long time. 
You also have support from this family and our thoughts and prayers will be with you along this journey of life.
Here is a little more info for you.
There is a home monitoring machine out now where you
can stick yourself and get the cumadin levels yourself
and avoid going in to the doctor or hospital to get
blood drawn.
The company that makes the machine is Quality Assured
Services Inc. and the person to contact if you are
interested in more info is Ms. Renee Kumar at
(407)563-2420 or email her at rkumar@qasmail. com
She states that the device may be covered by your
heath care coverage, medicare etc.

I also have had different doctor's opinions during my recovery from a valve job (artificial one installed 3-31-07). They have me on blood thinners too and advised me to wait 3 to 4 months before riding again with the twofold reason of wanting the sternum to heal fully so it wouldn't break during a possible fall and the bleeding issue.
After surgery my cardiologist  office was more encourageing than the surgeon's office and the didn't want to see me become an invalid and worry over bleeding. They wanted me to get back to riding as soon as I felt up to it. Yes they did say be careful though.
Several of the doctors down here have told me the patient's with the most bleeding problems are those that don't regulate themselves on the thinners and stay within therapeutic range.
Good luck,
David

[Hoist!]

Howie,
First of all, Sorry that you have to go through all of this.  Secondly, I have been more of a lurker than active participant, but feel somehow spiritually in tune with you!  I haven't had the pleasure of meeting you personally, but sure do look forward to that opportunity!  There has been a lot of really good advice given through this forum and even if it wasn't what you were looking for, it's there anyway.  Fortunately, today you at least have a backup with the meds if there are no other options.  If other genuine options exist following your extensive research, (which I know you will thouroughly exhaust) take the necessary time and make educated decisions with Binx!  It sure looks like you are on the right track so far, stick with it.  Ride or not?  You made that decision a long time ago!  Our thoughts remain with you!

Thank you lilbear, very kind of you! And we will get to meet soon I hope!

Researching this is why I started this here. I knew my CVOHarley brothers and sisters would help me weed thru the BS and locate good resources regarding this issue. We've got some awful bright minds on this site, but more importantly, we genuinely care about each other! I can't explain how or why we have all come together here and have grown into such a tight knit family. I've been riding for many, many years and have met hundreds of bikers over the years. But nothing has come close to the bond that's been created among our members. This place was just meant to be for us, I guess! I'm brought to the verge of tears sometimes, as I read some of your responses. Not just to this, but whenever tragedy strikes any one of us. I hope ya'll realize how magical this place is! Thanks again to all my brothers and sisters of this great site!!!

Hoist!

[Hoist!]

Hi Hoist,
I missed this thread earlier but just got through all the posts. You are right about lots of great info from this extended family.
I know by the time you have to make a decision you will be the best informed and knowledgable patient those doctors have seen in a long time. 
You also have support from this family and our thoughts and prayers will be with you along this journey of life.
Here is a little more info for you.
There is a home monitoring machine out now where you
can stick yourself and get the cumadin levels yourself
and avoid going in to the doctor or hospital to get
blood drawn.
The company that makes the machine is Quality Assured
Services Inc. and the person to contact if you are
interested in more info is Ms. Renee Kumar at
(407)563-2420 or email her at rkumar@qasmail. com
She states that the device may be covered by your
heath care coverage, medicare etc.

I also have had different doctor's opinions during my recovery from a valve job (artificial one installed 3-31-07). They have me on blood thinners too and advised me to wait 3 to 4 months before riding again with the twofold reason of wanting the sternum to heal fully so it wouldn't break during a possible fall and the bleeding issue.
After surgery my cardiologist  office was more encourageing than the surgeon's office and the didn't want to see me become an invalid and worry over bleeding. They wanted me to get back to riding as soon as I felt up to it. Yes they did say be careful though.
Several of the doctors down here have told me the patient's with the most bleeding problems are those that don't regulate themselves on the thinners and stay within therapeutic range.
Good luck,
David

Thanks a lot Dave! And thanks for the info on the monitor. That's something to look into. It'll make me feel more independent, even though I'll need to rely on the meds. It's nice to hear of your Dr's encouraging you to continue riding. At least there are some Dr's left who understand that you kill someone, just in a different way when you ask/force someone to give up their entire lifestyle! They can't possibly understand that this is so much more than just riding a motorcycle occasionally as a hobby like freakin' stamp collecting or something. This is my life! Everything I do revolves pretty much around motorcycles some how or another. It's like telling someone to stop breathing!

How are you feeling these days Dave? I had watched as you went through this, and how this family rallied around you and offered their support! This must have helped tremendously, knowing you have the support of so many people that truly understand you. I hope you're doing well and have, or are on your way to a complete recovery, and never look back!

Hoist!

[pumkinownerswife]

Hoist, Well, I tried to read the whole thread so I would know what you know and what you don't seems like you really have a handle on it. I just want to add that Coumadin has been a drug of choice for a long time. Dave's grandmother who will be 91 this year has been on it Coumadin for at least 20yrs. Dave take her for rides and on the bike and she still drives her car. She has multiple conditions but she also had the blood pulling around her heart. I think that Coumadin is a great drug as drugs go. I work at the VA Medical Center I can tell you that half or more of the vets are taking it and are alive because of it. They have drugs they can give you in a hurry to make your blood thicken in the event that you need it. We have a friend that was a cop until the day he was diagnosed with a viral form of heart loss but they told him to take Coumadin and stop riding but he hasn't and I don't think he will. And a lot of the vets that come to the VA on Coumadin ride their motorcycles to their appointment. I am sure you know that you need to watch the green leafy foods you it and other type of food I am sure your Doctor gave you a list of what not to eat  a lot of.

I also want you to know I have to take pills and use steroid inhalers everyday and they make my skin thin and my bones hurt but the alternative meant not being able to breath and breathing is something I think I would like to continue. I might not look that great my arms sometimes look like Dave beats me but I hope anyone that looks at me understands I chose  life over death.

Okay now that I have just gone on and on I guess I will just say could luck and just try and take it day by day which I think you are.


Helen

[Hoist!]

Hoist, Well, I tried to read the whole thread so I would know what you know and what you don't seems like you really have a handle on it. I just want to add that Coumadin has been a drug of choice for a long time. Dave's grandmother who will be 91 this year has been on it Coumadin for at least 20yrs. Dave take her for rides and on the bike and she still drives her car. She has multiple conditions but she also had the blood pulling around her heart. I think that Coumadin is a great drug as drugs go. I work at the VA Medical Center I can tell you that half or more of the vets are taking it and are alive because of it. They have drugs they can give you in a hurry to make your blood thicken in the event that you need it. We have a friend that was a cop until the day he was diagnosed with a viral form of heart loss but they told him to take Coumadin and stop riding but he hasn't and I don't think he will. And a lot of the vets that come to the VA on Coumadin ride their motorcycles to their appointment. I am sure you know that you need to watch the green leafy foods you it and other type of food I am sure your Doctor gave you a list of what not to eat  a lot of.

I also want you to know I have to take pills and use steroid inhalers everyday and they make my skin thin and my bones hurt but the alternative meant not being able to breath and breathing is something I think I would like to continue. I might not look that great my arms sometimes look like Dave beats me but I hope anyone that looks at me understands I chose  life over death.

Okay now that I have just gone on and on I guess I will just say could luck and just try and take it day by day which I think you are.


Helen

Thanks so much Helen! The thickeners I was not aware of. I've learned so much more here, than I've gotten from the Dr's.! But this doesn't surprise me. Our experts tell the truth and don't sugarcoat things like the Dr's. rushing you in and out their door's do. Just like dealers, they think they're doing you a favor and barely give you the time of day. "Just do as I say." BS, I'll find out all the facts and tell them what I want done, just like my 110'!

They've made me aware of avoiding green leafy things, and to avoid alcohol, which of course is tougher, but no big deal. They've given me no other dietary direction at this point. I'm also on Crestor, a cholesterol med, as a precaution, and my cholesterol is excellent. Life is like riding my bike. It's not the destination, it's the journey! And everyday is a new journey. This is just a detour in the road I came across. They want me to follow the detour signs, like every other cow! But I'm a Rhino and will blast my own road to where I'm going. Their detour might turn out to be the best route after all. But I won't be sure of that until I prove it for myself! Thanks again Helen, and I hope to meet you and Dave soon!

Hoist!

[pumkinownerswife]

Hoist, They don't have pills I don't think to make the blood thicker they give you Plasma IV. So it really isn't a drug.




Helen

[Twolanerider]

Hoist, They don't have pills I don't think to make the blood thicker they give you Plasma IV. So it really isn't a drug.




Helen

Helen, that's precisely what happened with my dad once.  Several bags over 90 minutes or so prior to a suddenly required surgery.

[lilbear]

Thank you lilbear, very kind of you! And we will get to meet soon I hope!

Researching this is why I started this here. I knew my CVOHarley brothers and sisters would help me weed thru the BS and locate good resources regarding this issue. We've got some awful bright minds on this site, but more importantly, we genuinely care about each other! I can't explain how or why we have all come together here and have grown into such a tight knit family. I've been riding for many, many years and have met hundreds of bikers over the years. But nothing has come close to the bond that's been created among our members. This place was just meant to be for us, I guess! I'm brought to the verge of tears sometimes, as I read some of your responses. Not just to this, but whenever tragedy strikes any one of us. I hope ya'll realize how magical this place is! Thanks again to all my brothers and sisters of this great site!!!

Hoist!

It is a great site and truly filled with special people!  As for meeting up sometime, we'll definitely make it happen.  Martha and I look forward to meeting you and Binx!  I agree that this forum was a great place to do a little information gathering!  Lot's of smart folks seem to be here and even more importantly, eager to contribute.  Your willingness to share your condition in an open forum like this one speaks volumes about you and your kindred spirit!

Keep the faith and you will remain in our thoughts and prayers!

Craig

[FLTRCVO]

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!

Here is my list of surgeries; knee (R / triple triad), hip (replacement), chest (heart valve), shoulders (L / reconstruction twice, R / fused ac joint), hand (R / pins & plate), head (4"X4" plate by Dupont for fractured skull ), stomach (intestine reconstruct created by bullet) and back (fused, rods, pins twice). I feel great, every surgery corrected the problem and vastly improved my quality of life. I have been blessed with tremendous surgeons, and physical therapists. Get 2 to 3 opinions from top notch cardio / thorasic surgeons and weigh the alternatives, don't let you health deteriorate due to a non decision, remember you are investing in your future.   

[Binx]

I just wanted to thank everyone here for all of your kind words, great support, valuable information and sincerity. I know that everything that you all are posting has been of great importance to Hoist and you all have been helping to put his mind at ease. Hoist and I will, of course, get through all of this with flying colors but knowing that we have such an amazing support system is wonderful. Thank you all so much. 

[Twolanerider]

amazing support system is wonderful. Thank you all so much. 

Hadn't really thought of it that way before Binx.  We are all like one big familial support system.  Everyone here is like a huge digital bra.

[Binx]

Hadn't really thought of it that way before Binx.  We are all like one big familial support system.  Everyone here is like a huge digital bra.

  That's beautiful, man!

[Twolanerider]

That's beautiful, man!

Binx makes me giggle.  (Howie's a lucky guy)

[Binx]

Binx makes me giggle.  (Howie's a lucky guy)

Awww shucks!

[harleyteam]

you have to do what YOU feel is right for YOU.



and to hell with everybody else.