Scared--need some answers

[Scott927]

I'm a 38 year old male, moderately active.  I recently went to see my MD after feeling a slight flutter in my left chest.  This usually only happened when I had had too much caffiene.  My doc did some blood tests and an eeg and he said I had a disorder called PVC but he was most concerned about an abnormally high red count.  He referred me to an oncologist who while checking me for polycythemia, sent me to a cardioligist for an echo.  My red count turned out to be high normal, but otherwise there were no concerns.  I didn't hear from my oncologist again until I went back for a checkup today (almost two months after my visit to a cardiologist).  My oncolgist informed me that they had tried to contact me and that my heart function was down to between 20-30%.  He told me that he thinks this could be an error, so he called my cardiologist while I was setting there who reexamined the echo and said it didn't look good.  I have to go back again in a week for more tests with my cardiologist. Other than that I have been given no information other than to take low dose aspirin. My oncologist thinks it could be a faulty reading. This is driving me nuts and frankly, scaring the hell out of me.   I can deal with whatever the final diagnosis is, but I am the type who likes to research and have some idea of what to expect good or bad.  For the record, I feel fine.  I used to run 20-25 miles per week, but since getting married and having kids, I have put on about 50 pounds in the last 9 years.  I had recently started running again to lose weight, but I had to stop because it was killing my knees.  I never had any pain or tightness in chest.  Since then I have been walking stairs at work on my break and I have lost about 5 pounds.  I guess what this all boils down to is I would like for someone to tell me what this could be so that I have some knowledge while I wait for my follow up with my cardiologist.  Otherwise I am going to go crazy for the next few days waiting to hear the news.  I have a family to worry about.  I need to know what this could be.  Can anyone tell me what this MIGHT indicate?  Good or bad, I want to know what I am facing.  Thanks.

[Scott927]

I finally got to see my cardiologist today after a nearly 3 hour wait.  He is supposedly one of the best in the state, so I was happy to wait.  

I was diagnosed with idiopathic cardiomyopathy and benign hypertension.  He said that since I feel fine and am active that I shouldn't worry so much about my EF.  He said it could have been a virus, or it could be genetics since I have had some people in my family who have had issues with heart disease.  He also said that since I used to be a distance runner, my EF may not need to be as high for me to function well.

He advised me to keep exercising, lose a few pounds and watch the salt.  He also  prescribed a low dose of coreg cr.  I have to go back in 6 months for another echo and if my EF has held steady (or hopefully improved) then he said the prognosis was very good.  I guess I am not out of the woods yet, but I am encouraged by what he told me.

Do any of you have experiences with Coreg cr?  What should I expect?

Once again, thanks for all your comments.  You all helped me deal with a lot of stress while I was waiting to get some answers.

[3dragons]

You asked how do we kow if it CHF or not? I want to ask in response, would giving what's going on with you a name help your stress about what's going on? Diagnosis very obviously is necessary to know what you are dealing with, and for the treatment, but sometimes once you have found out the name of something you have, you worry about it more!!! Maybe you do have CHF (and with an EF you wrote of, I would have expected more of the CHF symptoms too), but you sound as though you are managing your symptoms quite well. Some people can have a much higher EF with more symptoms that cause them problems, then there are others that get the whole gammut. Obviously you need to get to the bottom of what's going on, but prepare yourself well for the fear that can accompany a name to an illness or condition!  In the meantime, perhaps keep focus on what you are able to manage, and continue to be observant and logical as you were in your above post.

Or maybe its just  me - I am a worry wart ;)

[Scott927]

I appreciate your feedback.  I have been a little tired, but I figured that was from carrying around the extra 50 pounds I've put on since I got married 7 years ago.  I still have excellent exercise tolerance.  in fact, this past October I went to the Smokies with my famly and easily made a 1/2 mile uphill walk to Klingman's Dome (higest point in the Smoky Mts.) wiothout difficulty.  The only reason I had to stop was to wait for my wife. I even carried my 3 year old part of the way.   I have noticed that sometimes if I'm wearing tight socks I do have a slight puffiness in my lower legs (slight marks from the elastic in my socks).  However, I am a teacher so I'm on my feet 6-7 hours per day (and I coach track in the afternoons).  I never thought that was unusual.  I've always (my entire life) had a low tolerance for salt which seems to aggravate the very occassional puffiness.  I have no difficulty breathing at all.  In fact, if not for the fluttering and high red count, I wouldn't have gone to the doc at all.  I felt fine.  I guess the hard part for me (and for many of us) is that the symptoms of heart failure are often the same as being a little out of shape and carrying too much weight.  How the heck can you determine what is normal, and what indicates CHF??  I just find it hard to believe that my EF is that low when I'm essentially healthy and feel great.  Prior to this my only illness was a tonsilectomy when I was 7.  Go figure.  I'm having more tests run Tuesday.  My doc is supposed to be one of the best in the area.  I will let you know what he says.  Until then, I wish you all the best. I want to thank you all for your feedback.  I've been posting everywhere trying to get some answers and assurances and so far, this board has been the best.

[crystalhanzelka]

Does this sound like a form of cardiomyopathy to anyone else.  I would think with an EF that low that you would be swelling too.  (Pitting Edema)  Just make sure you follow up because IF it is cardiomypoathy, it can be treated and your EF can improve.  Please keep us posted.

[3dragons]

I dont have anything constructive to add, in terms of advice or knowledge. I just wanted to wish you well with whats going on, and say that I can understand how all consuming this kind of experience is. It scary! Allow yourself to be real with whatever you are feeling, and be an active member in your diagnoses and treatments. Ask questions, research, take care in every way you can, and do your best to find some inner peace with yourself so that you have some space to be able to process what's going on. Many of us here in this online community can share some of the frightening experiences you are going through now, and if its any comfort at all, many have also survived them for many years. I havent got the 12month mark (post diagnosis) yet, but it has been getting a little easier than it was in terms of the anxiety over the facts and figures. Best wishes. Let us know how you get on.

[Lutheran122]

Like Scott has stated in the above post , your EF can be 20-30% and you might not even know it. Some people don't show any symptoms except for being tired if even that. Others at the same EF are in the hospital. Everybody is different.

[Scott927]

The oncologist said that my red count was high, but not so high as to require anything other than a daily low dose aspirin.  Also, I had a strok screening done at work where they test your bp in each ankle and do an echo on your carotid--all came up normal.  The only symptoms I've had are a slight fluttering in my left chest and my ef of 20-30%.  Granted, I'm in no shape to run a 5k right now, but I walked 1/2 mile up to Klingman's Dome in the Smoky Mts. this October without a problem.  In fact, I carried my 3 1/2 yeqar old part of the way.

They haven't done any other tests on my heart other than qan EKG and an EEG.  I go to see my cardiologist Tuesday.  I actually got this news from my oncologist who is the one who sent me to the cardiologist.  My oncologist said he tried to contact me (almost 6 weeks ago) when he first got my echo results, but couldn't reach me.  Ironically, they managed to send me two bills, but couldn't tell me that I have cardiomyopathy and an EF of 20-30%.

Thank you all for your feedback.  Like I said earlier, I'm most concerned for my family at this point.  Personally, I'm trying not to dwell on it, but I would be lying if I told you I didn't think about it at least once every 5 minutes.  I know many of you can relate.

[Rich0314]

You said you went to an oncolgist (cancer specialist) also, why was he seen and the results from him where?

[Wisconsin2007]

I'm no doctor, but I would expect that with heart function down to 20-30%, you would be experiencing other symptoms, like extreme breathlessness on exertion, light-headedness, very high heart rate to keep up with the innefficiency of a 20-30% pump efficiency.  

I would think having tests done again would be prudent, because absent those symptoms, something doesn't add up for me.

[mgoday2003]

All I can figure is it was a false reading.  If your heart was down 20-30 % they would have admitted you to the hospital for monitoring.  Has your doctor done any other kind of test like an ECG or CT?  As well asking to where a holter monitor wouldn't be a bad idea.  Try not to stress I know its hard, but you need to keep the stress level low.  As for runnning it is good for you but you might want to where a monitor just to see where your heart is working at.  Hope this helps you out.