Re: 12 years after AVR, still no coumadin

[ryan__0__0]

Posted By ryan on July 10, 1999 at 11:55:37
I had a St. Jude's valve put in at age 17--12 years ago--and never really stuck with the coumadin therapy.  My metabolism was/is too widely varied for it to be useful, as the docs were always adjusting my levels every two weeks. I realize the risk I've run for all these years, and my mom is a nurse, so I've gotten grief about it practically every day. To this day, I have had no symptoms or problems, but as I get older, I am considering rejoining the world of the frightened and taking the drug.  My questions are: Do clots form gradually or rapidly?  If a clot formed, but was stuck inoffensively to the valve, what would the docs do?  Finally, is there any contraindication against daily scuba diving while on coumadin?

[Cleveland Clinic, MD]

Posted By CCF CARDIO MD - CRC on July 12, 1999 at 09:51:46
Dear Ryan,
Your mother is right ot give you grief.  You are literally playing Russian roulette with your life.  I have personally taken care of a patient in the same situation as you that had stopped taking her coumadin and developed a massive clot on the valve that was fatal despite our best attempts to save her.  Please make an appointment to see your doctor this week to resume your coumadin.  Don't delay.
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies.  Please feel free to write back with additional questions.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.  The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.

[Ryan__0__0]

Posted By Ryan on July 12, 1999 at 23:15:10
Your response is one of the reasons people like myself don't take our medicine. THe truth is that the risk of my coumadin dosage going too high because of my variable metabolism could cause me to bleed to death.  Which risk is greater?  Which inconveniences me more?  Which is more treatable?  I will not simply take a pill, sit in a chair and wait to die because you tell me that living a meaningful life will kill me.  Please only post a reply if you have answers to my questions.  Do you think I haven't heard your doomsday warnings?

[Cleveland Clinic, MD]

Posted By CCF CARDIO MD - CRC on July 13, 1999 at 08:00:18
The risk of a clot is higher than the risk of bleeding.  It's your life.
I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies.  Please feel free to write back with additional questions.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.  The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.

[mario__0]

Posted By mario on July 16, 1999 at 23:21:22
Ryan saw your post on the Heart Forum and I would like to throw in my thoughts.Yes you are right, there are risks in taking coumadin. Even in the best of circumstances there is a 1% chance per year that you will have a major bleeding episode. However there is a 100% chance that you will have a major stroke by time you reach middle age if you continue not taking your coumadin. If playing Russian Roulette fascinates you, stack the odds in your favor. I am sure you are a smart kid and you realize the odds will catch up to you. Dr CRC from the Cleveland Clinic is only after your best interest. If a mechanical valve and its responsibilities bother you that much talk it over with your cardiologist. Ryan play smart, if you think that living with coumadin is hard think about living with a major stroke. At least think it over....mario

[Cleveland Clinic, MD]

Posted By CCF CARDIO MD - CRC on July 19, 1999 at 10:42:53
Thanks for your comments mario.  I am genuinely concerned about Ryan because I have seen the results of not taking coumadin.  However he has the right to make choices for himself even if they are not in his best interest.  I have been thinking about this and there are two other possible options. One is low-molecular weight heparin.  This is much more expensive than coumadin but it may be an alternative if coumadin has truely failed.  The third option is to have a redo surgery with a tissue valve replacing the mechanical valve. This would obviate the need for any anticoagulation.
Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies.  Please feel free to write back with additional questions.
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.  The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.

[Mario__0]

Posted By Mario on July 19, 1999 at 13:30:16
Dr crc I did want to add a few more comments but did not feel it was right.Sometimes coumadin does not work as well as it should and some patients  need other forms of therapy. However I have heard from many cardiologists that I know. When they have young patients especially young males, the cardiologists do not feel they are getting the full picture. When my mother worked in the hospital and I was a volenteer there were many young patients who swore they were following the therapy to the letter only to have tests come back with conflicting results. It was funny to see how many young people forgot to mention they were  drinking  or were high on some sort of drug.  Maybe it comes with being young and thinking they are immortal.This in now way implies anything on Ryan. Sometimes the proof comes when a young  patient is kept in the hospital and given the correct dose of coumadin at the exact time all ends up O.K. We shouldn't be to hard on them because at one time when I was young I tried something I shouldn't have and wanted to go to the e.r but couldn't because my mother would have been told the day after.  So what I did was open the medical book to try to match my symptoms to a medical condition. I did not fool the dr but at least I tried. Thank you for you input on the heart forum...mario

[Cleveland Clinic, MD]

Posted By CCF CARDIO MD - CRC on July 19, 1999 at 14:45:22
You're right that many things, even foods, can interact with coumadin.  It may take some time to get a stable level but usually can be done.  Thanks for your comments.  Best wishes to you.
CRC

[Ryan__0__0]

Posted By Ryan on July 21, 1999 at 21:42:05
I persist that no one has answered my original questions, but merely provided me with the same rhetoric I've heard my entire life.  
Mario you seem as bought-and-sold as all these cario docs.  Real life is very different than being confined to a hospital bed.  Young people try new foods, new activities, get up at different times of day, stay up late some times, travel, and interact with new people practically every day.  All of these things throw our metabolism into a whirlwind.  Sure, it evens out if you sit in a hospital bed for a week, eating the same food at the same time every day--but what the hell good does a PT reading in a hospital do me in real life.  I had docs just raising and raising my dosage, then when I got light-headed and my readings were through the roof, they accused me of taking aspirin.  If I'd gotten cut then, I would have likely bled out.  
Won't someone treat me like a human who can understand the science and deal with the answers?  The fact that it's so hard to get straight answers out of the medical professionals fills me with doubt about their intentions, validity, competence, and knowledge.










Follow Ups:


Re: 12 years after AVR, still no coumadin Mario 7/21/1999
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12 years after AVR, still no coumadin CCF CARDIO MD - CRC 7/22/1999
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Re: 12 years after AVR, still no coumadin Ryan 7/22/1999
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12 years after AVR, still no coumadin CCF CARDIO MD - CRC  7/23/1999
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