Ever since i had a viral infection in my lower heart things have gone down hill, i was diagnosed with cardiomyopathy, congestive heart failure, and afib. I was admitted into ICU for three weeks with my heart ef rate at 15. I’ve heard all types of opinions from people and doctors, I feel like I can make my self better by pushing my self but have a lot of set backs. One doctor said that I will be disabled for the rest of my life, but I just can’t let my self believe that. Another said that the only way that I can recover is if I have a defibrillator installed witch does the same as a pace maker but also will shock you if your heart stops, witch that would be the last thing that I would want. The third doctor had told me that since it was a viral infection that attack my heart and since I’m young healthy and don’t smoke nore do any type of drugs that I should have a full recovery. Now thats the doctor that I want to listen to. Has anyone out there had or no someone that has had the sam thing and how long did it take them to recover.
Welcome to the SDMB, CableGuy.
Questions seeking medical advice and opinions belong in our IMHO forum. It’s no biggie. I’ll move this for you.
Also please note that the opinions you receive here are just the opinions of some random folks on the internet, and should not be taken as a substitute for real medical advice from a true medical professional.
Moving thread from General Questions to In My Humble Opinion.
If you’re only going to listen to the people that tell you the things you want to hear, what good are we going to do for you?
A friend of mine had a viral infection that affected his heart (viral endocarditis?) about ten years ago. He has had a couple of catheterizations since the original diagnosis, but he is 100% fine other than that. He doesn’t have a diagnosis of cardiomyopathy, though. He is 34.
Is transplant an option for you?
Is there any reason you can’t make a full recovery with the pacemaker installed? It seems like with such varying opinions from doctors it would be hard to choose and this might be the safest bet.
Based on my own medical history, I’m gonna take the unpopular side and disagree with you.
When I had my first bout with gout a while back, my doctor was vacationing. I saw another MD in the practice so I could have a Uric Acid level drawn and get a diagnosis. She asked if I drank beer. I said yes, lots of it. She told me I must stop. I told her that wasn’t gonna happen. She went ballistic. My MD (a friend as well as my PCP) understands my point of view.
Talking to other gout suffering beer drinkers, I found out that a few of them mitigated the harm of their drink of preference by alternating beer and water. I’ve been doing that since and haven’t had another attack.
On Pi day this year I had cardiac catheterization, and a stent placed. My cardiologist was going over my risk factors. Genetics can’t be changed. My lipid profile was excellent, but he began Lipitor after reviewing the data on why. He suggested I give up cannabis and alcohol. I countered with “stress” as a risk factor, and my self medicating kept my stress level negligible. I further pointed out that I would take 5 years of life that I enjoyed versus 10 years of unhappiness.
What is “right” isn’t necessarily what is “right for the patient”.
I think my aunt suffered from this. I mean, I know she had a viral infection that affected her heart and eventually had a defib installed but I don’t know the specifics of her diagnosis and stuff. I’m thinking she was in her late 30s or early 40s when it happened. It’s been about 20 years.
It definitely wasn’t a death sentence for her but she is disabled. Her main problem is just that she can’t exert herself too much or for too long. Grocery shopping is about it, and she does have a handicapped car tag because most parking lots are too far for her to cross. Other than that she doesn’t look disabled or seem disabled. She just gets worn out. She is on disability, though - she was a waitress before she got sick and without a degree wasn’t going to be able to do any desk jobs.
I have no idea if she could have done more to push herself in to not being so bad off. She already was a low-income person at the time of her illness so it’s not like she was able to see gurus and have lots of physical therapy. But I can see at your age wanting to beat this thing if you can…nobody wants to be sidelined if they can help it.
Just sayin, the title of this thread would make a great Pop or Country song title.
Disabled does not mean helpless. It might mean there are some things you can’t do any more but there still remain a lot of things you can still do and enjoy. If a doctor tells you that you are “disabled” you need to clarify what that means. You can’t run marathons anymore? You can’t walk? You can work at a desk job but not as a someone who needs to be on his feet all day or exert physical effort?
Could you clarify this for me? I’m not sure what you’re objecting to, here - having a pacemaker? Having a defibrillator? Getting a shock? (I have a sister with one - she says that the shocks ARE unpleasant) Having your heart restarted?
If you’re in a category that qualifies for a pacemaker and/or defibrillator then you are at risk of sudden death, dying in your sleep, whatever. Now, for some people they’d rather just accept that risk than have something implanted (my spouse and I lost a friend about 15 years ago who had that viewpoint - he lived a dozen years past diagnosis and simply didn’t wake up one morning. His choice. We were sad, but hey, his choice). Just be sure that you find out as much as you can before making such a decision.
Don’t just listen to the docs who tell you what you want to hear. Listen to the ones with bad news and if they say “you can’t recover” or “you’re disabled” ask them WHY they came to that conclusion, and/or what that means for you down the line.
Sounds like it could be a classic: Since You Left, My Heart Don’t Beat Right No More
I can only tell you my story. About 10 years ago, I was diagnosed with afib and have been taking coumadin ever since. This means regular blood tests (I had one yesterday and now I have to reduce the dose a bit). Then my pulse rate started dropping. When it hit the low 30s, I had a 24 cardiogram and it turned out that during the night, there were periods of up to 7 seconds with no beat. Scary! So a pacemaker was installed. Aside from being a nuisance at airports, this means a steady beat of 60. But there doesn’t seem to be any debility, aside from the fact that I am 77 and clearly slowing down. So get your pacemaker (or defibrilator, if that seems advisable) and live life as fully as you are able. Good luck.
I think your situation is different from the OP. You recognize that the recommendations you’re being given are appropriate to your clinical situation, but you’re choosing not to follow them. That’s perfectly fine, you’re making an informed decision. The OP is not even accepting that the first few doctors are correct and will only listen to the Doc that tells him what he wants to hear. He even admits it in the OP.
He isn’t going to listen to anyone here who tells him that having a viral cardiomyopathy with an EF of 15% is a HUGE risk factor for sudden cardiac death due to dysrhythmia and he REALLY needs to have an AICD (implanted defibrillator) placed until he can get onto the transplant list. He only wants to hear us say that everything will be fine if he starts exercising and his diseased heart will somehow heal itself.
^OK, I guess we are closer to agreement than I originally thought, USCDiver. Sorry if I was shrill.
Disabled doesn’t mean that you are incapable of doing anything. Ask your cardiologist what activities you can and should do to improve your condition, and build from there.
I had a doctors visit with the doctor that recommended that I have the defibrillator installed. He had me take some more tests and my ef is now at 35% after only five months, he thinks that my body is recovering great. He still says that even at an ef of 35% that I’m still at risk, and is obligated to tell me that I can still have a sudden death. But he said that I’m doing so good that I should think about it. He also said that if I reach an ef of 40% that medically there wouldn’t be a need for the defibrillator. I told him that I was going to give my self a year witch would be in October of 2015. Thats the month I almost died and also the month I was born. So I thank God for all the extra time he has given me with my family and I hope he gives me more. I thank you all for your opinions and for your info. Most people that I speak to are either very heavy and out of shape, old, smoke or just haven’t taken good care of themselves. And I think that since those are the people that doctors are used to dealing with that what makes me have more of a chance of a full recovery or even close to it. I know that my 50% is alot better then most people’s 60 or 70%. There are not many cases as mine so I thank you all for your opinions and info of people you know who has had something similar to what happened to me. I know that I can get better I just feel it. I know i can…
Hey man, I feel for you.
I had a very annoying but benign heart arrhythmia in the 90s (PVCs). It got really nasty, and at one point my heart was “skipping” every other beat (actually, the ventricle took an extra beat after every normal beat).
The docs did not give me much hope that I’d ever be rid of it. Now I might have a handful of PVCs on a bad day. Some days I feel none. This is basically at the level of a normal person.
There is just a lot that docs don’t know about the heart yet. You are healing. Stay on that path and think positively. My best wishes to you!
:D. I believe “install” is something a mechanic does with your car, pacemakers/defibrillators are “implanted”. Hope your heart continues to improve, and that you enjoy each day!
Sir, you can beat this. You’ve got the odds on your side and the right doctors advising you. If you want me to go out on a limb and say listen, well I’m willing to do that. Listen to your Doctor. I think that you will be fine if you do (but always double check their billing).
Now, that said…
People have been threatening me with that for Years! Hasn’t happened yet; I smile and I live my life and I truly hope that you smile & live yours to the fullest!
I’m old, unhealthy, smoked, and have done all sorts of drugs in the past. It took more than a year to make a full recovery for me. Obviously, YMMV. Except for the atrial fibrillation, which I never experienced, you’ve more or less described what I went through 10 years ago. At one point, like you, I had a measured ejection fraction of 15%.
I’m curious how you know the cause was a viral infection. My doc told me that the only way to determine that for sure was to do a biopsy of the heart muscle, and that doing so was risky enough that it was better to treat symptoms and just speculate as to cause.
In any case, if you want more detail regarding my experience, PM me. I’m hesitant to discuss my medical treatment in an open forum, but if it might help you, I’m willing to do so more privately.
It appears to me that in summary you developed a cardiomyopathy, presumed post-viral, with an initial ejection fraction of 15% which has improved over the following five months to 35%. An implantable defibrillator has been recommended because the risk of sudden death from an abnormal rhythm is elevated. However because your ejection fraction is improving, the urgency for the implantable defibrillator is diminishing.
Risk stratification for your condition is a numbers game. When we try to figure out if something helps decrease mortality, we put people into different categories, make interventions, and see what the outcome is. That way, we can say, “Well, if your cardiomyopathy was viral, and your EF is 30%, and you don’t have these other risk factors, your chance of dying from an abnormal rhythm is 6% per year.” (I am making the actual numbers up.) The problem is that every patient is slightly different, so each doctor seeing you at a particular point may have a slightly different opinion of what to do.
Your EF is improving, and that makes it trickier as well. As your doctors have pointed out, if you get to an EF of 40, the data suggests a defibrillator might not diminish your chance of sudden death.
I suggest trying to make sure you are seeing an experienced cardiologist in this field, and then simply ask what he thinks the risk for you is, roughly. Then ask what the risk of the defibrillator is. Then make your own decision.
There is a lot of medical literature around this topic, and it’s very interesting but it might be a little technical. I found one article here that isn’t very technical. Maybe it will help you see how experts themselves try to approach this.
I am not inclined to make specific observations about patients here, but I would not be surprised if your physician tells you that you have already passed through the period of maximum risk for sudden death in patients with non-ischemic dilated cardiomyopathies presumed to be of viral origin.