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Dilated Cardiomyopathy
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Dilated Cardiomyopathy

My big brother is 55 years old. On Friday (12/21) he was hospitalized with shortness of breath and swollen ankles. He has now been diagnosed with Dilated Cardiomyopathy, and they say that his heart, which should be pumping about 55% of the blood, is only pumping 15% of the blood. They also said that they found a ventricular fibrilation ( a 'skip'?) and they were considering implanting a defibulator. He is in another state, so I am only getting whatever information I can over the phone from him.

He called last night to say that they have put him on five different types of medication and that they have reconsidered implanting a defibulator because the medication seems to have helped the skip. But he also said that there is only a 50% survival rate after 12 months for people on this medication and that the only other alternative is a transplant. Is this true? Is there somewhere that I could find out survival statistics?

He has told the family his diagnosis, but he hasn't told anyone else (including his wife and kids, my parents or my older sister) his prognosis. I think right now he needs someone to 'research' this with him and encourage him, but I don't know where to start.
I want to find information that will give him a more positive perspective on this. Do you have any studies I could read? Any suggestions of where I could start looking? I've searched the major search engines, and much of it just explains what DCM is, but says nothing about survival statistics.

I'm sorry if this is long. I'm kind of at a loss.
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Avatar_n_tn
Dear driftwood,
Unfortunately the survival data for dilated cardiomyopathy (DCM) is not very good.  The 50% survival at 5 years comes from heart failure trials such as that by Packer, et. al. published in New England Journal of Medicine 1996 vol 335 pp1107-1114.  Other good sources of data on heart failure outcomes would be textbooks such as Topol's "Comprehensive Cardiology" or Braunwald's "Heart Disease".  Your library should be able to help you find these resources.  

Statistics only tell one part of the story and if he is alive at the end of 5 years it does not matter what the stats are.  There are always new therapies on the horizon and transplant may be a good option for him at some point.   The best encouragement is to support him going through this and to be there when he needs you.  Hope this helps.
12 Comments
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Avatar_n_tn
This article has some good information...

http://my.webmd.com/content/asset/biography.465

Good luck...

Ken S.
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Avatar_n_tn
There is a site at www.heartcenteronline.com has quite a bit of information on dilated cardiomyopathy (it says the five-year survival rate is 50%).  

I do not have cardiomyopathy, but I do have a defibrillator.  If your brother does end up needing one, I suggest you go to zaplist.org - it's a great patient-to-patient support group, and you would find out many people lead relatively normal lives with a defibrillator.  I wish you and your brother the best of luck.
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Avatar_n_tn
I am a 50yo male, Dxd with cardiomyopathy in June of 2000.  It came on very fast.  At first the MD thought it was Pneumonia and I was placed on antibiotics.  These only seemed to make me sick to my stomache with no results.  One of the Docs had a relook at the chest Xray and noticed the heart enlargement (thanks goodness).  

Then had and EKG and Angiogram.  Angiogram found no problems with arterial blockage but the pumping action of my heart had been reduced significantly.  By the time the cardiomyopathy was dxd I was well into Congestive Heart Failure.  The Doctor encouraged me to walk as much as I could tolerate which was only from the living room through the kitchen and family room and back at first.  

With the help of the medication, I began to get stronger though I did loose about 40lbs.  (hell of a way to do it).  Gradually I increased my stamina to a walk down one length of the block, then around the block to a 2 mile round which I now continue along with my bike riding when the weather allows.  

I found the hardest part to be just letting go of all the anxiety which accompanied the various outcomes I was laying out in my thinking.  Some days I was scared to death, especially when the Doc stated that at some point I could be a candidate for a heart transplant.  I also developed atrial fibrillation as a result of the enlargement of the heart which streached electrical pathways.  I was cardioverted twice but neither worked.   I eventually ended up on amioderone which did get me back in rhythm so I avoided another attempt at cardioversion.  

I am pleased that I am back working full time in a some what less stressful job.  But there is hardly a day that goes by that I do not think about the quality of my recovery compared to how I felt the summer of 2000.  

One opinion is read re: cardiomyopathy and it's course suggested that about 1/3 of patients get worse; 1/3 stay the same and 1/3 improve.  At this point I count myself fortunate to be in the 1/3 that have improved significantly.  My biggest struggle cont. to be controlling my weight.  I really have to  monitor calories.

Best of luck to you.
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Avatar_n_tn
nikonman, I'm curious; what do -YOU- attribute your "fast acting" Heart Failure to?  Was it weight, smoking, fatty foods, alcohol, runs-in-the-family etc.?  Do -YOU- think you can pin-point it?  How would you have done things for your health differently?

I'm not trying to -PRY- here, I'm 52 and your message moved me.

wilson-wilson
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Avatar_n_tn
Hia Driftwood,

It's great that you are there for your brother and he has someone else that relalises the seriousness of DC!  I have it myself, and can imagine thought for thought what has gone through your brothers head.

I must have read every site on it too, and you will find only the same info in that it's 30% three ways! You will also read that heart faulure has a 1-5 year mortality rate.  HOWEVER you have to remember that these are only general statistics and the best help I found was reading other peoples accounts of living with DC.  There is a website called jonsplace.com (may have that wrong, but you'll find in on a search engine).  If you go to the forum and call up the 'profiles' of posters you'll read some really encoraging reports of people who have lived with it in excess of ten years.

Now this is all assuming that you brother doesn;t improve! Which he may well do so, and if he doesn;t the really positive news is that there is some very exciting research happening right now into artificial hearts and gene therapy, so if your brother had to get this condition, then what a better time to do so as he is unlikely to die from it before we see some results from this research.  The texas Institute over there is largely involved with the Jarvik artificial heart which has been succesfully implanted on 4-5 people in the UK this year with excellent results.

So tell your bro, that he isn't alone and whilst it's a major bummer, he must NOT panic despite the docs scaring him half to death ;-)  
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Avatar_n_tn
Folks, thank you so much for the responses, references and encouragement! I've downloaded a bunch of information from your references, and have even downloaded the responses to show my brother. It's so encouraging to know that you can adjust and continue on with DCM to some extent. I think what my brother heard was what he thought was a death sentence. Perhaps, as some of you have suggested, if I hook him up with some of those folks who have encouraging accounts of living with DCM, it will help to raise his spirits and encourage him to follow doctors orders.

Thank you so much again!
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Avatar_n_tn
I'm not sure I can pinpoint anything specifically.  I was overweight, I used to smoke, quit drinking 12years ago, been treated for high BP, History of Major Depression and Generalized Anxiety Disorder.  Part of my reading has indicated a person can be living with cardiomopathy for some time before the symptoms actually become acute.  I believe this is probably what happened to me.  I was walking around with it for a long time before it suddenly became evident.

My Doc described it as idiopathic (that is without an idenfied cause) however most seem suggest that idiopathic is most likely virus based.  I many have had some sort of virus earlier in the year of 2000 that I had not fully kicked.   Though in my recollection I am want to find anything.   Both my parents have a history of CHF.  In fact my father died just after thanksgiving and CHF was listed as one of the causes on the death certificate.    (Quite a wake up call for me!).

Letting go of the fear and anxiety conts. to be a daily task.  Lots of re-evaluation Re: what is important to me and how I want to live.  My friends and family have been a great help...I still have large memory gaps from when I was the most ill in summer of 2000 - much of it is the lost summer.  They still catch me with no recall of events that took place then.  

Returning to work has been a challenge, as I sought to move back into the work environment slowly, which my employer we not to keen on.  They wanted me back full time sooner and I had a devil of a time coordinating with my disability provider and my MD.  I
did not work for about 3 1/2 mon.  I had every symptom you read about CHF and Dilated Cardiomyopathy.  My stamina is still not quite what it used to be but I do seem to be adjusting.

My apology for rambling a bit, but I have found it rather difficult to find folks who are interested in listening to my health journey over the last year and a half.  Thanks for asking -- I did not in any way consider it prying.  

Good Luck,


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Avatar_n_tn
What can I say man?  I'm not a religious person but if there is someone there I sure hope he/it/they/she [did I get'em all in there?] will see fit to show some mercy to you.  If I have any stored up at all, you are welcome to mine.  And please don't think this is idle chit-chat,  I don't -DO- idle chit-chat.  I'm NOT "miss cleo" either<G>, BUT....[I can't believe I'm about to use this statment...I hate the statement I'm about to use, but I don't know how else to get it across by typing a message without the nuances of vocal exchange....so here it goes]

"I feel you" somehow.

[damn now I'm going to have to go and wash my hands for that statement, if I had said it audibly I'd have to wash out my mouth..., it makes me feel...so..so Clinton....damn!]

wilson-wilson

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Avatar_n_tn
I almost can't believe what I'm reading here from NIKONMAN and DRIFTWOOD... Count me in... I too have this dreaded problem which surfaced suddenly in the late winter of 2001.

The doc also thought it was viral pneumonia, and that diagnosis almost killed me.

My whole situation is soooooooooooooo similar to both of yours (and no doubt to many others) that it is uncanny. My cardiologist also told me that I couldn't go on like this for more than 5 years, and I too read it as a death sentence. I don't understand all this business about interpreting "echo's" and such, I just know that 7 or 8 months later I feel almost as good as before all this happened. When I heard the news that I interpreted to mean that I only have 5 years left, I told the old boy that the problem with doctors is that they want to turn out a PERFECT result. They're not hapy unles all the data they can gather is at least text book levels. Personnally, I'll settle for "adequate". To my way of thinking, if I can this much improvement in the way I feel in 7 or 8 months, this is completely adequate. If it never gets any better, SO BE IT... I'm satisfied with the way it is, if it comes to that. If it gets better, that's fine too. But to think of dying in 5 years, well, I figure that's 5 years longer than I otherwise would have had.

Take all this transplant stuff and save the badly needed organs for those that have no chance at all... I have a chance, and so do you two gentlemen, and I'll play these cards. Transplant surgery can't boast the same OVERALL success rate as the two thirds of us who stay the same or improve to some degree.. According to all I've read, and the advice of a transplant surgeon,the so-called success rate is only measured 5 years post-transplant and doesn't make any statement about those who died before an organ became available..

God help us all, but at this point, it doesn't hurt to pray a little and keep on enjoying life as best you can.
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Avatar_n_tn
Hello all,
My situation is completely different from everyon else.  I am 24 and have a 9 month old son who was diagnosed with Dilated Cardiomyopathy when he was 6 months old. He was placed on many different drugs in hoping that his heart would go back to it's normal size. The doc said his heart was as big as a 17 yr old male's. His heart never got smaller and he was not improving so he was put on a heart transplant list. He was only on the list nine days and he recieved a heart November 11th, 2001. He is doing good now. He is finally starting to regain some strength back. We will never know if his Cardiomyopathy is from a virus he caught or if he was born with it, either way we had no problems with his heart until he was 6 months old. We have no family history of heart problems or childhood deaths.  We were very surprised with hearing he had a heart problem, you never think a baby could have something like that. But I just wanted to tell our story. My son's name is Gavin. Thanks Julie.
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Avatar_n_tn
Hello Everyone,

Just reading the posts. My heart goes out to all of you and I truely admire your strength. So happy there is a forum such as this. All the best.
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