Hi everyone, I'm Char. I was just diagnosed with cardiomyophy - again. My cardio says the damage to my heart was caused by a virus. My ejection fraction was 32, now 35, so our next step is a defibulator, because I have premature ventricular contractions (PVC's). My heart's too weak to come out of a string of PVC;s. I'm still numb, and don't have faith in a 3 inch piece of metal working 100%, but I haven't all the info yet. I'm scared. Have any of you been able to relate to this? Any input, feedback is welcomed. Am considering Mayo Clinic. Right now I'm shocky, angry at no one - I have to deal with what killed my dad. He didn't have exactly the same problem, but I can still picture him with shortness of breath. I am just not coping well right now - that will come. Thanks, guys.
I can totally relate to what you're feeling. My doctor is wanting to put one of those flimsy looking devices into my chest too.
You are a better person than me. I grew up in a family with 13 kids and I'm the only one facing heart and kidney failure and it makes me so angry I could scream. I am at the "why me?" stage, and I lose sleep every night worrying about it.
My thoughts and prayers are with you, and I hope it all turns out for you. I hear the defibs do a pretty good job of keeping a person alive, so don't give up hope.
I wish you the best and hope things go well for you. In 2006, I was diagnosed with cardiomyopathy caused by a virus. I had pneumonia and it went to my heart. However, it looks as if I was very lucky because although my ejection fraction was about 16 to 20 back in 2006 and things looked really bleak. My doc was talking heart transplant if my EF didn't come up pretty quick. But after having a really good doc and being on meds for a long time, my EF has come all the way up to about 50 and so things are looking up as far as my heart goes. I think I am probably the exception to the rule. Anyway, just wanted to wish you luck and let you know that you never know how things will turn out. I've heard that the defibulators work really well - so don't be scared. Prayer are with you.
Now - as for you - lol! I want you to start feeling better about those defibulators too. It's OK to have the "why me's". Everyone usually goes thru this stage when having a heath crises. I am on disability now and also trying to keep up my spirits and I think one way I feel better is to try to help others get thru their crises. In 2000, I found a lump - breast cancer. I went thru the surgeries, chemo, no hair, reconstruction, all of it. What a pain. I had the "why me's" and crying jags and all of it. Then, when I was better, in 2004, I had surgery to remove a polyp in my colon (they thought it was pre-cancerous). Surgery went wrong. 4 months in hospital and still have problems from this. Then, like I said before, in 2006, I got the cardiomyopathy from the pneumonia. As you can see, I've been thru it. Don't know why I'm telling all this except to let both of you know that there is hope and things do get better. My husband says I have 9 lives and I'm sure both of you do too. Good luck to you with the debifulator. My thoughts and prayers are with you.
Thanks for the pep talk. My husband calls me duracell. Problem is, I feel like my batteries are running down and it scares me.
I have a cardiologist telling me that without a kidney transplant I'll die. Then I have a kidney doctor telling me that without a heart transplant I'll die. Then, both tell me that I most likely won't qualify because I have two major health issues. So, you can see where that leaves me, right? Suck Land, and right now I'm angry.
Hopefully, you have 9 lives - lol! I know it can be scary - but hang in there - don't give up. You sound as if you have a good head on your shoulders and a good support network. I read some of your other posts and it sounds pretty bad. But if you've lived this long with it, you just have to listen to your docs and get thru it. (I know your already know all of this but sometimes it helps to hear it) My thoughts and prayers are with you.
Well, I know one thing for sure. I'll either make it through, or it won't be a problem for my any more.
I'm not giving up, and death is going to have to hog-tie me in order to take me out, but some days just suck, and there's nothing I can do about that.
My doctors always ask me how I'm feeling, and lately I've felt like I'm losing the war and nobody cares, but me.
I remember when my Mom was diagnosed with Hodgkins(cancer of the lymph glands). The doctors did all kinds of treatments, telling her that it should cure her. She was cured of the Hodgkins, only to be slammed with chemically induced lukeimia, which they fought with transfusions, among other things, BUT when her insurance had reached it's cap, all of the sudden the doctors decided there was nothing more they could do for her, and it was just a matter of weeks and she was gone.
My insurance has a $1 million dollar cap, then I wonder if they will "no longer be able to treat me"......so, it's scarey. IF I get the much needed kidney transplant, it will take about 50% of my insurance allowance, which translates into $500,000 for everything else for the rest of my life. I don't think it's going do the job....ugh.
You wouldn't think that doctors would be so cold, for it to be all about the money, but about 3 months ago I had a heart attack, and I admit that I was a bit slow about paying the cardiologist..I think the bill was 30 days past due when I finally had the strength to make out the checks. Anyway, in that time my cardiolgist told me not to come back until I heard from him. After I made payment in full, I got a letter from him, telling me it's time to come back. Coincident??? I don't think so.
I'm new to the posts. I'm 42 and last Aug/09, my EF% was 40%. I'm was in good shape where the doc's decided to do a heart cath to find the root cause. They found zero blockages, NO heart damage and the heart itself is very good with normal shape with good flow except in the LV. I still have NO chest pain..Just the stress of worring about my EF. They have no reason why my EF% is still at 40. I run 3 times per week at 2 miles each time and tennis on the weekend. The doc's think a virus attacked my heart. They have no other reason. They started me on two meds...one as a ACE blocker and one as a beta blocker. Does anyone have a similar story and what's the chance it will improve. Is this critical. I know EF is not the only thing to look at. My activity level is still good and all other parts of the heart are good. I'm concerned about the 40%. My Cardio doc wants met to see a CHF specialist to find out aobut the viurs and root cause.
I read too many stories and they seem scary...But it looks I have some good point on my side.
I apprecaite any feedback, as this is totally new ground for me.
Sounds like you're at least feeling pretty good. An EF of 40 is not really that bad. A normal EF is 50 and over, I believe. I read a lot about this when I got my cardiomyopathy. People with EF's of around 40 can live forever (if there's nothing else wrong, of course) as long you are careful and try to eat and exercise properly, which it sounds like you do. It sounds like you and your doc are worried because you don't know the reason for the lowered EF. However, from what I read cardiomyopathy often happens with no cause. It's called "ischemic", I think. Anyway, I am no doctor. Try not to stress out too much.
When I got my heart failure in 2006, they checked me over pretty good and I was the same as you. No chest pain, no blocked arterties. But at that time, with an EF of 20, my heart was really enlarged and having trouble pumping. But now, my EF has come up to 40 - yea! I have been on ace and beta blockers too, as well as lasik and stuff. They are very helpful. So, yes, it can get better. My cardio doc told me each person is different. Some heart's mend and the EF comes up and some don't. With your exercise and all, I bet your's will get better.
Thanks for the note. I really needed this. I guess the good news is...I'm being watched and all other signs are very postitive. Just this morning, I did another 2 miles and my diet is pretty good. My father died of diabeties 2 years ago and this put the scare in me. So now my diet is excellent. I guess this proved my case, as my hearth cath showed zero blockage as they were wide open. Also,my heart is normal is size (i.e. no enlargment).
Thanks again and I'll try to focus on other parts of my life. I guess this can be worse. Funny what your mind can do to you.
Yep, sounds familiar. I just got out of the hospital a few hours ago and the doctors were all in agreement that my heart problems were caused by a virus.
The problem, of course, is the quality of life left after the virus seems to have left the body. It *****. There's just no other way to put it. I'm at 15 %, with ongoing problems, like not being able to breathe, or not having any strength, etc.
The more I read, the more angry I feel. Where do these virus' come from? I'm sorry you are yet another victim. Good luck.
Thanks. I'm keeping postive. I'm still very active and hopefully catching it early. The good thing for me is... no damage and the heart size and functions are normal. I'm happy I'm starting my two meds now early in the ball game. I think the stess also does not help... Some of these stories from the web sites are scary. I'm around 40-38% and with the healthy heart (except for the low EF), I'm going to keep positve. The doc's told me...good thing my working out was high. This may be been my one saving grace.
Not sure if this a good sign...My wife tells me my face is now full of color and glowing. I feel fine...just as I did before.
Question...After your virus, did you always have a 15% or did it go down slowly (i.e. say from 40-30-15. Just wandering.
Sorry. One last question. Did they do any tests to find the type of virus (i.e. blood tests). Or did they just say the virus is gone from your system? I would hope they try to find the root cause for the low EF if everything else is health. I have to see a CHF specialist in 3 weeks as my current doc has no answer for my EF as everything is normal. Just wandering.
I 'm 42 years old and i was just diagnosed with conjestive heart failure, i was classification 3 with ejection fraction of 8% i was told that it came from a virus that got in my blood stream i dont know were the virus came from or what caused it. i got sick with a cold in october of last year and my health just went down from their, i was on a heart monitor for 3 months because the dr's said i was at high risk for sudden cardiac death. they told me if my ejection fraction didnt go up to at least 35% or higher i would have to get a pacemaker, all i could do was take the meds and pray and i went to the dr a couple months ago and they took me off the heart monitor and my ejection fraction is up to 40% thank god!
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