Scared 32 with congestive heart failure

I am a 32 yr old male just diagnosed with CHF the doc. says my heart is pumping only 40% of the blood out each time it pumps. He says 50% or more is normal. I want to know if any one knows some one with CHF at a young age like me. Can some one who is diagnosed with CHF at 32yrs. live to be 80yrs.old and if so is it rare. I guess im wondering if its likely i could live to 70 or 80 with a healthy lifestlye and medicines. Or if the odds are stackes against me.

[Protime]

It sounds like you are speaking of the ejection fraction being 40%, which BTW, is not too terrible.  The normal EF is 50% or better.  So your heart is pumping more in the range of 80% of its optimal capacity.  Medications can help control this situation.  My EJ was 45% last spring, but dropped to 20-30% because of atrial fibrillation.  I had the aortic valve replaced when I was 30.  I went on to finish a 40 year career, supported my family and enjoyed every moment of life.  I am now 63.

Heart failure, when diagnosed and treated correctly is non-life threatening for many years.   Who of us knows how long we have to live.  Just live each day to the fullest, take care of yourself and get on with life.  Don’t sit around counting the days.  Of course, there may be life style changes depending on the severity of your situation.  Get a cardiologist your trust, and closely follow his advice.  The best to you!

[arrestthisman]

Hi there,

I'm 24, and I was born with cardiomyopathy, which progressed to pulmonary hypertension when I was 9.

My EF is like 38 or so. When I was younger I was much more sick. In fact when I developed PH secondary to the heart condition, I was told I was TOO sick for heart/lung transplant. I went through very dangerous experimental drug trials. (My case, because of my parents consent is actually taught at the University of Washington.) With medication, I improved so much that they didn't think I needed transplant, and so they just kept an eye on me closely.

When I turned 16 or so I stabilized. Transplant only has come up with my Dr.s once since then. I had a CHF scare that was overlooked. It was complicated, but with a cardioversion (1 hour out of a day, it's a total nothing), and some heavier diuretics, I was out of it in a couple of days, and no more worries about that for now, and hopefully for a long time.

I take a ton of medication, much of it is a precaution--my case is also atypical. I've faced death too many times, and never come to peace with the uncertainty of life with a heart condition. However, because of my case (and that I was allowed to hang out in a cardiac research lab for 4 years) I've been privy to a lot of information, and here is the deal for heart patients... If you can stay alive for five years, there will be more treatments coming out in regenerative medicine than there have been in the last 50.

But I'm going on and on: The point is... from my point of view, it's ok to worry. But also remember that a lot of people with nothing "wrong" with them, die suddenly and unexpectedly.

I've seen more friends die than I ever thought I would at my age, unfortunately; substance abuse, freak accidents, suicides, etc.

Everyone is in the same boat. Yes heart problems do increase risk. But we're also monitored MUCH more than the average person.

Another thing to remember is that death statistics for disease do not include new treatments. PH used to be 2 years until death. Then new meds came out, and the average went to 5. It's about to be raised to 10. So a study that says you have 5 years to live on average does not take into account that many of the patients, say in the first 3 years of the study, did not get the benefit of lifesaving drugs that the last 2 years did. It also usually includes cases that may have had poor medical care, or concomitant illness.

If medicine came to a standstill, yes then you can worry more. But I have personally climbed the ladder of treatment to treatment, extending my life until the next new thing.

Also, keep in mind, that in terms of sudden death, unless your EF is below 35 (and some studies show it's more like 30) there isn't much of an increased risk of death. The risk goes up a lot when the EF drops below those figures, but even then, they put in an ICD and you're usually covered.

I really hope this amount of detail helps. I would like to be able to give  a shorter answer, but it's very complicated and there are many factors.

My most important advice is to get the best Dr.s available in your area. When I was younger my EF dropped to 15% and it was $%$%^ scary as hell, but I had one of the top 5 electrophysiologists (and pathologists) working on my case.

now I'm 24, have my own organs, and I can bike for 1 and 1/2 hours straight on a bike with medium tension. I've only gotten better. I was so sick as a child, and as I said life and lifespan only improve! Knock on wood, Thank God! It was a bit of hell getting here, but now my biggest complaints are stomach aches from the meds, and anxiety which is just because I had a traditional Jewish upbringing. lol.

One more piece of advice. Be a fighter. It's a total cliche, but it's also totally true.

I had one doc, this guy was so NOT into mind/body etc. He was old-school, and didn't even believe that weight gain put that much strain on the heart (we now know different, and he did change his tune). But he used to tell this story about a kid he had ; the kid needed a very routine and safe surgical procedure that no one was worried about but him. He was convinced he was going to die.... He died on the operating table. On the flip side, I've talked to docs about cases (especially with kids, because they are more interesting and complicated cases) where they had patients with death sentences, and then they turn out fine, go to school... they usually need a lot of treatment, but they live!

My family's attitude which they banged into my head, was: Whatever happens to you, you WILL FIND A WAY TO SURVIVE. My Docs loved patients like that, because they usually don't die as often. ,

So stay positive. Get a support system because it takes its toll on your mind, that's actually the worst part for me, at least. But also remember that the truth of traveling through time with a heart condition is that the longer you live, the longer you Will have to live. If you have 5 years now, in 4 years you will have 10, in 10 you may be cured.

I really wish every heart patient could see what I've seen in the labs. Beating heart cells in a dish, intentionally damaged, and then healed to normalcy, right before your eyes under a microscope!

Anyway, I hope this helps. I've been dealing with this for 21 years. I swear I haven't exaggerated a thing. In fact, there's so much more to tell.

I hope this gives YOU some hope, and calms your fears a bit. That you should look forward to the future and not worry about the clock ticking. You are more than welcome to PM me  with any questions, or if you just need to vent.

I feel very bad you've had to deal with this suddenly. I think maybe growing up with it, in a way, is easier. Not that it was easy. Anyway, good luck. Be proactive, and get the best damn docs you can find! Stay vigilant and err on the safe side.

- Alex

[Dr J Singh]

Hi,

It’s really sad you have got this illness at a young age. Truly speaking, no doctor on this earth can predict who’s going to survive how long. There have been incidents where doctors have written off some patients and the have gone on to live umpteen yrs. Well, you are definitely at a disadvantage compared to the healthy folks, but with the regular medications, healthy diet and lifestyle, some regular exercises like walking etc will actually put you at an advantage compared to the healthy folks as you can understand the importance of these measures much better.

I hope that helps. Please do keep me posted. Kind Regards.