Discussions By Condition: I cannot get a diagnosis.

there must be more to treatment for cardiomyopathy than this.....

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: PreciousDays
  • August 12, 2007
  • 01:58 AM

Help. I am 46 recently diagnosed with cardiomyopathy. My EF has dropped from 45% in late Oct. to 35% in July. I am always tired and often short of breath. Have had 3 cardiologists since Oct. One implied I was dying (he closed his practice when old drug charges came to light) - one implied I was stupid for working with the first one to begin with - and couldn't move beyond suggesting I be tested for HIV, (despite no risk factors in the past 20 years.) and finally - one seems to care at least now that the EF is dramatically lower than it was when I first became her patient...... They want to do an EP study and give me a biventricular pacer / defibrillator. (In less than two weeks!!!!!!!!!) I have only been on three meds - coreg (which fills my lungs with fluid) toporol, and altace. There must be other meds we can try before jamming foreign objects and live wires into me. I have been scouring the web for information but haven't found much. I just feel these doctors haven't done enough before deciding this radical approach is all that stands between me an certain sudden cardiac death.....

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7 Replies:

  • Precious days,I myself was given a diagnoses of viral cardiomyopathy 5 1/2 years ago. I am currently on coreg(no problems), digoxin and accupril and I am 37 years old. My diagnosis started with going into ventricular tachacardia (250 beats per minute) and being rushed to the ER one night in 2002. My cardiologist said that only one in 100,000 people survive that initial event. The doctors did an EP study and also decided to implant an AICD. Although I have had no other problems to date, my EF was and as far as I know is around 25%(echo done 2 years after initial event). Only God knows why I have not experienced the symptoms you stated you are experiencing! I am currently living a normal happy life. Our bodies are all made different and I have asked what would have caused my condition. The fact remains that many physicians do not know the answers to all of our problems. The research that I did seems to indicate that the underlying cause to cardiomyopathy can be genetic, viral (not HIV), or substance abuse(most notably cocaine or severe use of alcohol). However, I would suggest that the AICD has given me some comfort in knowing that if any abnormal arrythmia were to take place I have a pacemaker/defibrillator built in. This in itself reduces your chances of sudden cardiac arrest by about 50%. Just to let you know, I now have 3 children instead of 1 and found out that my wife was expecting our second child the day I was discharged from the hospital. Never forget the power of prayer as my mother laid her hands upon me in the ER and the moment she said Amen after a prayer my heart converted to a sinus tach at 110 beats per minute. I hope this can help you in your decision making process as this is not only a physical challenge but also a mental one.
    Anonymous 42789 Replies
    • August 15, 2007
    • 04:05 AM
    • 0
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  • Precious days, there is a lot more to treatment for cardiomyopathy, the best doctor i know is at the cleveland clinic, his name is starling, my father was diagnosed when he was 42, and was told he would have to have a heart transplant within 5 years, that was 15 years ago. My dad just completed his second marathon. This doctor know his stuff but you are gonna have to make some lifestyle changes that are very hard, one of the first would be to get ALL extra weight off of you!!!!! NO FLOUR, NO SUGAR diet will work wonders in this area. Have your family doctor give you a referral to the Cleveland Clinic, they are the best doctors I know of.Precious days,I myself was given a diagnoses of viral cardiomyopathy 5 1/2 years ago. I am currently on coreg(no problems), digoxin and accupril and I am 37 years old. My diagnosis started with going into ventricular tachacardia (250 beats per minute) and being rushed to the ER one night in 2002. My cardiologist said that only one in 100,000 people survive that initial event. The doctors did an EP study and also decided to implant an AICD. Although I have had no other problems to date, my EF was and as far as I know is around 25%(echo done 2 years after initial event). Only God knows why I have not experienced the symptoms you stated you are experiencing! I am currently living a normal happy life. Our bodies are all made different and I have asked what would have caused my condition. The fact remains that many physicians do not know the answers to all of our problems. The research that I did seems to indicate that the underlying cause to cardiomyopathy can be genetic, viral (not HIV), or substance abuse(most notably cocaine or severe use of alcohol). However, I would suggest that the AICD has given me some comfort in knowing that if any abnormal arrythmia were to take place I have a pacemaker/defibrillator built in. This in itself reduces your chances of sudden cardiac arrest by about 50%. Just to let you know, I now have 3 children instead of 1 and found out that my wife was expecting our second child the day I was discharged from the hospital. Never forget the power of prayer as my mother laid her hands upon me in the ER and the moment she said Amen after a prayer my heart converted to a sinus tach at 110 beats per minute. I hope this can help you in your decision making process as this is not only a physical challenge but also a mental one.
    Anonymous 42789 Replies
    • February 11, 2010
    • 03:46 AM
    • 0
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  • Hi. I was diagnosed with dilated cardiomyopathy early this year. My heart is pumping out at 25% and I haven't died yet. :) They're also talking about installing a defibrillator which scares me as well since I am still quite young myself. I don't have any personal experience to share since I haven't received the defib yet but I happen to know a lady who had one installed so naturally I grilled her. She said it is really so much better than she expected. It leaves a lump showing in her chest but it otherwise doesn't inconvenience her at all. They form a sort of pocket of skin and just slip it in. She even had her unit recalled and she still said it wasn't really a big deal. I hope that helps at least a little. By the way...do you have any periferal neuropathy (nerve damage) as well?
    Anonymous 42789 Replies
    • October 11, 2010
    • 07:49 PM
    • 0
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  • Help. I am 46 recently diagnosed with cardiomyopathy. My EF has dropped from 45% in late Oct. to 35% in July. I am always tired and often short of breath. Have had 3 cardiologists since Oct. One implied I was dying (he closed his practice when old drug charges came to light) - one implied I was stupid for working with the first one to begin with - and couldn't move beyond suggesting I be tested for HIV, (despite no risk factors in the past 20 years.) and finally - one seems to care at least now that the EF is dramatically lower than it was when I first became her patient...... They want to do an EP study and give me a biventricular pacer / defibrillator. (In less than two weeks!!!!!!!!!) I have only been on three meds - coreg (which fills my lungs with fluid) toporol, and altace. There must be other meds we can try before jamming foreign objects and live wires into me. I have been scouring the web for information but haven't found much. I just feel these doctors haven't done enough before deciding this radical approach is all that stands between me an certain sudden cardiac death..... Hi. I notice that your post is dated in 2007 so I hope you`re doing well. I`m not sure if you still check back or not but just in case I thought I`d reply. I was also diagnosed with dilated cardiomyopathy in February of this year. My heart pumps out at 25%. My cardiologist also wants to install a defibrillator in me so he`s referred me to a cardiac unit for a 2nd opinion. I was curious to know whether or not you had the surgery and if so, if it is working well for you. If you do get this, I would appreciate any helpful advice you may have. Thanks!!! PS. Do they know the cause of your heart problems? Also, did you ever have any nerve damage in your hands, legs or feet?
    Anonymous 42789 Replies
    • October 11, 2010
    • 09:00 PM
    • 0
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  • Hello to all, My mom has recently been diagnosed with nonischemic cardiomyopathy. She is 45, her ejection fraction is around 35% and she is on O2 and takes Coreg, among other meds. It makes me nervous to read different websites about the prognosis because they all seem to say 5 years is all that people diagnosed with this will live. Her BP and pulse have been excellent with the Coreg and the Dr's say that her arteries are, "as clean as a whistle". Is there anyone out there with this disease that has lived a long time with it? Her ejection fraction is what worries me the most. I believe it was around 45% last year so it's gone down since then. I would like to hear others experience with this please.
    Anonymous 42789 Replies
    • October 26, 2010
    • 04:29 PM
    • 0
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  • This is true. My brother was followed by Dr. Starling (who is awesome) after he was disagnosed at 32. He did not follow anything he was supposed to so he did not live past the 8 year mark. I was diagnosed at 35 with cardiomyopathy and have been chugging along successfully. I try my darnest to follow what the professionals tell me to. I probably do more physically than others may feel comfortable but my medical professionals are clear about being and staying active as well as maintaining medication and dietary regiment. I have found I continue to push myself to find my physical limits and then work to improve them. I walk 4 miles at least 5 times a week and in the last couple of months have taken to slowly adding in a slow run during that walk to continue to strenghten the remaining good heart functioning I have. People are being diagnosed earlier with this condition and it means there is more heart muscle to work with and save so that means a much more positive outcome than a decade or so ago.Precious days, there is a lot more to treatment for cardiomyopathy, the best doctor i know is at the cleveland clinic, his name is starling, my father was diagnosed when he was 42, and was told he would have to have a heart transplant within 5 years, that was 15 years ago. My dad just completed his second marathon. This doctor know his stuff but you are gonna have to make some lifestyle changes that are very hard, one of the first would be to get ALL extra weight off of you!!!!! NO FLOUR, NO SUGAR diet will work wonders in this area. Have your family doctor give you a referral to the Cleveland Clinic, they are the best doctors I know of.
    beckyld 2 Replies
    • September 8, 2011
    • 07:01 PM
    • 0
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  • Get her to the best cardiologist in your area. Most people diagnosed with this is condition can ebb and flow. My brother functioned with an EF of 20% for many years - though he was often fatigued. I was initially diagnosed with an EF of between 35-40% and it has improved to 45% so there is hope. I am seen at the Cleveland Clinic in their Heart Failure department.Hello to all, My mom has recently been diagnosed with nonischemic cardiomyopathy. She is 45, her ejection fraction is around 35% and she is on O2 and takes Coreg, among other meds. It makes me nervous to read different websites about the prognosis because they all seem to say 5 years is all that people diagnosed with this will live. Her BP and pulse have been excellent with the Coreg and the Dr's say that her arteries are, "as clean as a whistle". Is there anyone out there with this disease that has lived a long time with it? Her ejection fraction is what worries me the most. I believe it was around 45% last year so it's gone down since then. I would like to hear others experience with this please.
    beckyld 2 Replies
    • September 8, 2011
    • 07:05 PM
    • 0
    Flag this Response
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