Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 From: " Heimowitz " <heartbreakhotel@...> > I have been diagnosed with " dilated cardiomyopathy. " (NYHA class 2). In my > cardiologist's infinite wisdom he has told never to lift again,take slow > walks,and started on an ACE inhibitor. With a beta-blocker to follow. And > to just wait and see.. But I have a problem with this " just wait and see " > approach..My quality of life right now is reasonable, and I'd hate to see > it fade quickly by sitting around. > > If anyone has any suggestions ,knows or has helped anyone with this > disease, any info on ongoing research, therapies, nutrition, herbs, rehab, > anything to get me started in the right direction, would be greatly > appreciated. You are dealing with a serious condition . The main complication of this disease is sudden death. Do not ask advice from non professionals who have never examined you or your tests. If you are not satisfied with your cardiologist's opinion, see another cardiologist or perhaps one who specializes in cardiac rehab. Harvey Maron, M.D. Steamboat Springs, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 There are several types of Cardiomyopathy.... There is Idiopathic, Dilated and one other... Mine is "familial" cardiomyopathy. That is what they are calling it, and I asked the Doc what kind... He said "Probably Dialated". Hope this helps a bit....... ~guin Janet wrote: I think you probably mean idiopathic cardiomyopathy. Idiopathic means they don't know what caused it (proof that doctors don't know everything!) janet --------------------- From: pschatsky@... Subject: Re: Death Pardon my ignorance again (excuse me Turk if you think I am stupid not everyone is as smart as you). What is DILATED CARDIOMYOPOTHY? I have cardiomyopothy idiomathic Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Dilated is when you heart is enlarged in order to compensate for the damage. Familial, idiopathic, alcohol induced are the causes. Hypertrophic and dilated are types of cardiomyopathy. When you get a description of your disease it goes cause-type-cardiomyopathy (which means heart illness or something vague like that). Make sure you force your doctor to give you an exact diagnosis of which you have. Treatments vary based on the type and cause. Have to send a note once in a while, Pete ____________________________________________ " If you want to live a long and happy life, get a chronic disease and manage it. " Oliver ll Holmes Visit www.healthyheartmarket.com/ -----Original Message----- From: Guin Van Dyke [mailto:guin@...] Sent: Saturday, March 23, 2002 3:42 PM Subject: Re: Cardiomyopathy There are several types of Cardiomyopathy.... There is Idiopathic, Dilated and one other... Mine is " familial " cardiomyopathy. That is what they are calling it, and I asked the Doc what kind... He said " Probably Dialated " . Hope this helps a bit....... ~guin Janet wrote: I think you probably mean idiopathic cardiomyopathy. Idiopathic means they don't know what caused it (proof that doctors don't know everything!) janet --------------------- From: pschatsky@... Subject: Re: Death Pardon my ignorance again (excuse me Turk if you think I am stupid not everyone is as smart as you). What is DILATED CARDIOMYOPOTHY? I have cardiomyopothy idiomathic Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 There are many different forms of CM ... I have Idiopathic (unknown cause) Dialated (enlarged L ventrical) Cardiomyopathy... which I believe is the most common form... and then there are others... this link should list them w/a discription of each... http://www.heartcenteronline.com/myheartdr/Articles_about_the_heart/Th e_Cardiomyopathy_Center.html familial I believe means it effects many members of a family being passed down thru the genes... which is usually the case w/IHCM ... I'm not certain about the other forms ... whether they're passed down as well...anyone know??? ... I do know mine was not passed down ... the theory is I contracted a virus which invaded my heart ... this could be any old garden variety virus... all it has to do is take up housekeeping in your heart muscle and next thing you know you're in my shows JES in NJ God Bless America > There are several types of Cardiomyopathy.... There is Idiopathic, > Dilated and one other... Mine is " familial " cardiomyopathy. That is > what they are calling it, and I asked the Doc what kind... He said > " Probably Dialated " . Hope this helps a bit....... > ~guin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 PS... seems you must copy/past that addy as only a portion became a blue 'link and doesn't seem to take you anywhere... so please copy/past and it will give you much info re:various forms of CM JES > > There are several types of Cardiomyopathy.... There is Idiopathic, > > Dilated and one other... Mine is " familial " cardiomyopathy. That > is > > what they are calling it, and I asked the Doc what kind... He said > > " Probably Dialated " . Hope this helps a bit....... > > ~guin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Thats what I have too. I was hoping to find folks who've lived longer than at least 5 years with the condition. So far I've got Doug with 6 years... - Rob --- icdjes <Naojeca@...> wrote: > There are many different forms of CM ... I have Idiopathic > (unknown > cause) Dialated (enlarged L ventrical) Cardiomyopathy... which > I > believe is the most common form... and then there are > others... this > link should list them w/a discription of each... > > http://www.heartcenteronline.com/myheartdr/Articles_about_the_heart/Th > e_Cardiomyopathy_Center.html > > familial I believe means it effects many members of a family > being > passed down thru the genes... which is usually the case w/IHCM > ... > I'm not certain about the other forms ... whether they're > passed down > as well...anyone know??? ... I do know mine was not passed > down ... > the theory is I contracted a virus which invaded my heart ... > this > could be any old garden variety virus... all it has to do is > take up > housekeeping in your heart muscle and next thing you know > you're in > my shows > > JES in NJ > God Bless America > > > > > > There are several types of Cardiomyopathy.... There is > Idiopathic, > > Dilated and one other... Mine is " familial " cardiomyopathy. > That > is > > what they are calling it, and I asked the Doc what kind... > He said > > " Probably Dialated " . Hope this helps a bit....... > > ~guin > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Thanks ; When i saw dilated as enlarged arteries i didnt know which one mine was. My arteries are fine but my heart is almost twice the size doc told me when i had myocardidis(infection of the middle layer of the heart) due to viral infection since those days(god old days) i was working out alot my body tried to compensate by making extra muscle. Thanks for the info. Good Luck Good Health and Good Heart. TURK PS: Please join us more often. Re: Death Pardon my ignorance again (excuse me Turk if you think I am stupid not everyone is as smart as you). What is DILATED CARDIOMYOPOTHY? I have cardiomyopothy idiomathic Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I am on my 6th year also. Getting by on an EF of 23. Pete ____________________________________________ " If you want to live a long and happy life, get a chronic disease and manage it. " Oliver ll Holmes Visit www.healthyheartmarket.com/ Re: Re: Cardiomyopathy Thats what I have too. I was hoping to find folks who've lived longer than at least 5 years with the condition. So far I've got Doug with 6 years... - Rob --- icdjes <Naojeca@...> wrote: > There are many different forms of CM ... I have Idiopathic > (unknown > cause) Dialated (enlarged L ventrical) Cardiomyopathy... which > I > believe is the most common form... and then there are > others... this > link should list them w/a discription of each... > > http://www.heartcenteronline.com/myheartdr/Articles_about_the_heart/Th > e_Cardiomyopathy_Center.html > > familial I believe means it effects many members of a family > being > passed down thru the genes... which is usually the case w/IHCM > ... > I'm not certain about the other forms ... whether they're > passed down > as well...anyone know??? ... I do know mine was not passed > down ... > the theory is I contracted a virus which invaded my heart ... > this > could be any old garden variety virus... all it has to do is > take up > housekeeping in your heart muscle and next thing you know > you're in > my shows > > JES in NJ > God Bless America > > > > > > There are several types of Cardiomyopathy.... There is > Idiopathic, > > Dilated and one other... Mine is " familial " cardiomyopathy. > That > is > > what they are calling it, and I asked the Doc what kind... > He said > > " Probably Dialated " . Hope this helps a bit....... > > ~guin > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Rob... pardon my ignorance here... so many posts ... so little comprehension ... you're saying you have Dialated CM? ... that's mine as well... and I'm 12 yrs out from dx this week as I posted previously ... so not to worry about what they say about 5 yrs... relax! ... JES > > There are many different forms of CM ... I have Idiopathic > > (unknown > > cause) Dialated (enlarged L ventrical) Cardiomyopathy... which > > I > > believe is the most common form... and then there are > > others... this > > link should list them w/a discription of each... > > > > > http://www.heartcenteronline.com/myheartdr/Articles_about_the_heart/Th > > e_Cardiomyopathy_Center.html > > > > familial I believe means it effects many members of a family > > being > > passed down thru the genes... which is usually the case w/IHCM > > ... > > I'm not certain about the other forms ... whether they're > > passed down > > as well...anyone know??? ... I do know mine was not passed > > down ... > > the theory is I contracted a virus which invaded my heart ... > > this > > could be any old garden variety virus... all it has to do is > > take up > > housekeeping in your heart muscle and next thing you know > > you're in > > my shows > > > > JES in NJ > > God Bless America > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hey Rob; If you mean dilated cardiomyopath i ve had it for 12 years now dont scare me there bud.TURK Re: Re: Cardiomyopathy > Thats what I have too. I was hoping to find folks who've lived > longer than at least 5 years with the condition. So far I've > got Doug with 6 years... > > - Rob > > --- icdjes <Naojeca@...> wrote: > > There are many different forms of CM ... I have Idiopathic > > (unknown > > cause) Dialated (enlarged L ventrical) Cardiomyopathy... which > > I > > believe is the most common form... and then there are > > others... this > > link should list them w/a discription of each... > > > > > http://www.heartcenteronline.com/myheartdr/Articles_about_the_heart/Th > > e_Cardiomyopathy_Center.html > > > > familial I believe means it effects many members of a family > > being > > passed down thru the genes... which is usually the case w/IHCM > > ... > > I'm not certain about the other forms ... whether they're > > passed down > > as well...anyone know??? ... I do know mine was not passed > > down ... > > the theory is I contracted a virus which invaded my heart ... > > this > > could be any old garden variety virus... all it has to do is > > take up > > housekeeping in your heart muscle and next thing you know > > you're in > > my shows > > > > JES in NJ > > God Bless America > > > > > > > > > > > There are several types of Cardiomyopathy.... There is > > Idiopathic, > > > Dilated and one other... Mine is " familial " cardiomyopathy. > > That > > is > > > what they are calling it, and I asked the Doc what kind... > > He said > > > " Probably Dialated " . Hope this helps a bit....... > > > ~guin > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 In a message dated 3/24/02 1:44:03 PM Eastern Standard Time, tgreenho@... writes: My arteries are fine but my heart is almost twice the size doc told me when I had myocardidis(infection of the middle layer of the heart) due to viral infection since those days(god old days) i was working out alot my body tried to compensate by making extra muscle. Thanks for the info. Good Luck Good Health and Good Heart. TURK Turk Do you really believe exercise can help your cardiomyopathy? I did not think so, I am always tired and lazy. If I knew it really helps not just increase my stamina. I would force myself to do them. What kind of exercise do you do? Did this improve your EF? Mine is 29. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 At 06:29 PM 3/23/02 -0500, you wrote: My arteries are fine but my heart is almost twice the size doc told me when i had myocardidis(infection of the middle layer of the heart) due to viral infection since those days(god old days) i was working out alot my body tried to compensate by making extra muscle. Thanks for the info. Good Luck Good Health and Good Heart. TURK Hey Turk, Always a treat to read your postings. I don't respond much, but I do read all the postings each day. I had a heart attack in June, 1997. As a result, my left ventricle had a lot of damage and it is now dilated. In other words, my heart is now larger than normal, and therefor does not pump the blood efficiently. I suspect that you have already heard the following explanation from a doctor ---- before a balloon is blown up, it is nice and tight. But after you blow up the balloon, and let the air out, it is all floppy and stretched out. That is how my heart is now. EF is 20. So my cardiomyopathy is due to the heart attack damage. As you already have read, there are many more types. Tom in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 i was soooooooo scared of doing exercise ive been helping in my aunt tile store as an exercise it actually makes me feel better but im still paranoid most of the time i dont know i think the fact that i ran out of my zoloft(anti anxiety med) must have something to do with it Take care TURK Re: Cardiomyopathy In a message dated 3/24/02 1:44:03 PM Eastern Standard Time, tgreenho@... writes: My arteries are fine but my heart is almost twice the size doc told me when I had myocardidis(infection of the middle layer of the heart) due to viral infection since those days(god old days) i was working out alot my body tried to compensate by making extra muscle. Thanks for the info. Good Luck Good Health and Good Heart. TURKTurkDo you really believe exercise can help your cardiomyopathy? I did not think so, I am always tired and lazy. If I knew it really helps not just increase my stamina. I would force myself to do them. What kind of exercise do you do? Did this improve your EF? Mine is 29. Phyllis Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 i was soooooooo scared of doing exercise ive been helping in my aunt tile store as an exercise it actually makes me feel better but im still paranoid most of the time i dont know i think the fact that i ran out of my zoloft(anti anxiety med) must have something to do with it Take care TURK Re: Cardiomyopathy In a message dated 3/24/02 1:44:03 PM Eastern Standard Time, tgreenho@... writes: My arteries are fine but my heart is almost twice the size doc told me when I had myocardidis(infection of the middle layer of the heart) due to viral infection since those days(god old days) i was working out alot my body tried to compensate by making extra muscle. Thanks for the info. Good Luck Good Health and Good Heart. TURKTurkDo you really believe exercise can help your cardiomyopathy? I did not think so, I am always tired and lazy. If I knew it really helps not just increase my stamina. I would force myself to do them. What kind of exercise do you do? Did this improve your EF? Mine is 29. Phyllis Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 In a message dated 3/24/02 5:27:09 PM Eastern Standard Time, goturk1@... writes: i was soooooooo scared of doing exercise ive been helping in my aunt tile store as an exercise it actually makes me feel better but im still paranoid most of the time i dont know i think the fact that i ran out of my zoloft(anti anxiety med) must have something to do with it Take care TURK Dear TURk: I seems to me that we are all on the same page, but I am not sure I have the answer. My unit went off 25 times (I think because I do not remember) every few minutes, Based on that I live in terror of that happening again, although my MD says it would be very rare for that to happen. I want to do exercise as well, but I am so dizzy from all of my drugs and I too am paranoid. The only peace I find, is to appreciate each day, look forward to daylight (I take a lot of stuff before I go to bed) so when I wake up morning s almost here. I am grateful for a new day, I almost went bye-bye. That is so scary and even though we silently feel we are immortal, that experience showed me that I was not a real wake up call. So my new philosophy is relax and be grateful even though I spend a lot of time at the MD's I find peace even in that. I am under Doctor's order to stay away from stress. Sorry I went on so long, I guess you tapped something in me to finally open up and begin to share. By the way, I am no longer angry with you Turk, I guess it was just a misunderstanding, I guess I am oversensitive. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hi Phyllis; My problem is not really dying, it is suffering from something major or (my nightmare) keep getting shocked rite b4 itits the pain part, In my culture death (although its not talked of very lightly) is accepted as a part of life and is one of the last thing were afraid of. I am just hoping to live long so i can see my grandchildren and get a chance too see them grow.(not for another hopefully20 years, my twins are 6 years old.). Right now i accept life for what it is and try to change it towards my happiness and enjoy everymoment of it.I am getting to ease up on the paranoia because i got my zoloft and clonopin back(im a druggie i admit it) so no more panics and depression for a while. Surprisingly and unbelievably these phsyc meds work. and im fine with them. Guys and Gals. I would like to take this moment to thank you all for enlightening my life and being there when i needed you the most. Even with a little email you have no idea that how much of my paranoia was gone(as you might have guessed im the one that says dont stop writing. it wasnt just for you people, also was for me.) So with that thought Luv you all and wish you " Good Luck, Good Health and Good Heart". TURK Re: Cardiomyopathy In a message dated 3/24/02 5:27:09 PM Eastern Standard Time, goturk1@... writes: i was soooooooo scared of doing exercise ive been helping in my aunt tile store as an exercise it actually makes me feel better but im still paranoid most of the time i dont know i think the fact that i ran out of my zoloft(anti anxiety med) must have something to do with itTake care TURKDear TURk:I seems to me that we are all on the same page, but I am not sure I have the answer. My unit went off 25 times (I think because I do not remember) every few minutes, Based on that I live in terror of that happening again, although my MD says it would be very rare for that to happen. I want to do exercise as well, but I am so dizzy from all of my drugs and I too am paranoid. The only peace I find, is to appreciate each day, look forward to daylight (I take a lot of stuff before I go to bed) so when I wake up morning s almost here. I am grateful for a new day, I almost went bye-bye. That is so scary and even though we silently feel we are immortal, that experience showed me that I was not a real wake up call. So my new philosophy is relax and be grateful even though I spend a lot of time at the MD's I find peace even in that. I am under Doctor's order to stay away from stress.Sorry I went on so long, I guess you tapped something in me to finally open up and begin to share.By the way, I am no longer angry with you Turk, I guess it was just a misunderstanding, I guess I am oversensitive.PhyllisPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 TURK ..... > Gals. I would like to take this moment to thank you all for > enlightening my life and being there when i needed you the most. > > > Same back to you, dude. Finding out that one is, indeed, mortal is > sure a life-changing experience. > ita, comments? I saw your earlier message about your first > zap(s). Appreciated your blase attitude > towards them..... which is shared by my husband Rich. I'm always and > ever shall be in great appreciation > of the optimistic outlook! However, having been here for a while, and > hearing how frightening the zaps can > be, i can't help but wonder how you are REALLY feeling. I hide my > terror of things that scare me to death, > under jokes and blase 'tudes. Do you? If not, disregard! > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 I know this group is but there are so many knowledgeable people on this group that I thought I would ask this question. My sister was diagnosed with cardiomyopathy and is on cummidin and host of other DRUGS. Is there any way to treat this from a Holistic approach? Thanks so much for any help you may offer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 As you must already know, this is but one of many cardiovascular ailments and Coumadin is one of the blood thinners they frequently use. This adds to the problem of finding alternative means. For example, Vitamin K rich foods can interfere with the Coumadin action etc... A dear friend of mine was being treated at the VA for cardiovascular (arteries) problems. The 'chief' pharmacist became personally involved and asked to see his list of drugs and supplements being used. When she saw he was using CoQ10, which I had suggested, she advised him to double the dose he was taking. I found it encouraging that this 'chief pharmacist' would think enough of CoQ10 to encourage its use. She did stop his use of Garlic supplements rather than stop his use of blood thinners. She did not stop his use of Oral Chelation (EDTA) but said, " it wont hurt " . Your problem is going to be getting your sister to walk away from the Man/Woman in the White Coat. Unless she is alternatively oriented, your efforts will be wasted. The urge to follow conventional medicine is strong and if her physicians are as most, she will be discouraged from 'wasting her money' on alternative practices and threatened with 'dying' if she does anything other than follow exactly what they say. Not an easy problem to solve. Do you have a practitioner that can help? Joe C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Thank you so much for your response Joe! My sister is in Illinois and I'm in Arizona. The reason I first became interested in " alternative " treatments is because my dog Jack was diagnosed with anal gland aedenocarcinoma and given 4 to 6 months one year ago and he is THRIVING! I have a Holistic vet for him in NY that we consult with but none here in AZ. I don't have a clue on how to go about a Holistic practitioner for my sister but I'm going to start searching. She's just on so many different drugs, it can't be good. How much COQ10 should she be taking daily? The people on this list are so knowledgeable and I trust them! Thank you again for your reply! Beth From: JCastron Subject: Re:Cardiomyopathy As you must already know, this is but one of many cardiovascular ailments and Coumadin is one of the blood thinners they frequently use. This adds to the problem of finding alternative means. For example, Vitamin K rich foods can interfere with the Coumadin action etc... A dear friend of mine was being treated at the VA for cardiovascular (arteries) problems. The 'chief' pharmacist became personally involved and asked to see his list of drugs and supplements being used. When she saw he was using CoQ10, which I had suggested, she advised him to double the dose he was taking. I found it encouraging that this 'chief pharmacist' would think enough of CoQ10 to encourage its use. She did stop his use of Garlic supplements rather than stop his use of blood thinners. She did not stop his use of Oral Chelation (EDTA) but said, " it wont hurt " . Quote Link to comment Share on other sites More sharing options...
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