Heart Failure

I am 18 and I was born with myocardial failure. Feel free to add me

A year ago I was feeling so bad that I finally went to a doctor who referred me to a cardiologist. I was told I had cardiomyopathy and my ejection fraction was 30%. I also found out that I had diabetes and very high blood pressure. I already knew that I had sleep apnea but was not treating it. Since that time I have changed my diet, lost 62 pounds so far. BP is normal with medication. Blood sugar is normal level with no medication - just dietary changes. I'm using a bipap machine for the sleep apnea. Medication has helped my ejection fraction get to 50 which is a vast improvement - I no longer need to have a defibrillator implanted. Sounds like if you are a candidate for a transplant your heart disease is more serious than mine - but feel free to add me as a friend if you like. I still have a lot of weight to lose - at least another 100 pounds and hopefully more than that.

Your profile is that of an amazingly strong woman. I am not in the same position, but I wanted to wish you the very best in your life and your journey here. :flowerforyou:

I don't know if anyone is monitoring this topic anymore, but I'm so glad I found it! I was diagnosed with a cardiomyopathy as a sophomore in college. Athletes have to take a mandatory physical before they are cleared to play, and during that physical the cardiomyopathy was discovered. I was sent for an echo and found my ejection fraction was 32%. They then did a coronary angiography and didn't see any hardening or thickening of my heart, but I had to sign a waiver to play. The doc put me on something (can't remember what) but it made me so tired, I started missing tons of classes. I stopped taking them, but since I felt fine, I never thought about it, and totally forgot I had it at all.

Fast forward to some 10 plus years later, the issue has come back to haunt me. I went to the doctor for back pain, rib cage pain, distended belly and swollen legs and I found out it's the cardiomyopathy again. Do I have to stop working out? Should I stop drinking? I'm guessing I need to cut out all red meat and salt now? Does anyone have any success stories/advice and what worked best for you? I'm kinda freaking out here...:frown:

Fast forward to some 10 plus years later, the issue has come back to haunt me. I went to the doctor for back pain, rib cage pain, distended belly and swollen legs and I found out it's the cardiomyopathy again. Do I have to stop working out? Should I stop drinking? I'm guessing I need to cut out all red meat and salt now? Does anyone have any success stories/advice and what worked best for you? I'm kinda freaking out here...:frown:

You should ask your doctor.

Oh, I plan on it. Appt next week. Just figured I would reach out to folks that had been through a similar situation......

I wouldn't listen to anyone on here; good luck with your appointment and I hope they can find a way for you to better manage that! Good luck :flowerforyou:

I'm 43 and had a heart attack 3 years ago! I was actually dead for a couple mins. They strapped on the difibulator and shocked me back. I was lucky, all of this took place in the cardio wing of the hospital. So, I had a double by pass and left the hospital around 200 pounds. I swelled up to 230 and have since gotten myslelf back down to 203. I do almost all running! I always keep my heart rate below 160 ( I'm sure its different for everyone) Talk to your Dr. and start slow!! I still walk/run but I am able to cover 3.1 miles in under 39 mins. I'm shooting for 35 mins by October. Good luck and add me if youd like.

The official word hasn't come out yet, but I'm nearing the sweet-spot for late side effects of the chemotherapy and radiation therapy from 2009. Just a few months shy of the "average" onset window, I went to the ER with heart attack symptoms. Plenty of blood tests to show that no, it isn't a heart attack, later, it's looking like my ejection fraction is taking a dip. An ultrasound from a month or two ago indicated it was going as low as 50% (versus the expected 56% or higher), and we don't know if it's continued to drop since then. I did a CT angiography scan earlier this month, but won't get to talk to the doctor until the middle of next month. (I'm hoping the absense of any "get yourself to the ER, NOW" calls is at least a moderately positive sign.)

The biggest headache for me is that, being in the military, I'm now on a profile where the exercise prescription is "no runnign greather than 50 yards, no forced walking, no repetitive bendign at waist, no liftign or pulling greater than 30 pounds", basically in order to keep my heart rate down. This is particularly annoying, because it rules out most kinds of exercise, and I still had to take my fitness test which, due to that profile, was waist-only. So I can't officially exercise beyond walking, but I still have to keep my waist in check.

I do, however, take some liberties with it. Recognizing that the key is keeping my heartrate down, I do a lot of walking, sometimes four miles on top of the one to two mile long walk I take my dog on. I also do Stronglifts and bodyweight exercise, being sure to rest enough to keep my pulse down. It's more than the "err on the side of safety" for my profile, but still much lighter than I used to do (run 3 miles M/W/F, Intervals T/R, plus workouts designed to get your heart racing while you lift weights, etc.).

Once we have a better idea of exactly what's going on, I'll be working with my doctor to see how hard I can safely work, because, after watching my body waste away during chemo and all the feelings that surrounded that, my mind is simply NOT willing to accept a "no exercise" lifestyle.

Wow! That is amazing! My ef has been as low as 15% but usually around 20-25%. My last echo 6 months ago was 30% but I was told not to get excited b/c it will never reach normal range. I'm hoping to prove them wrong and hope that upping my exercise and lowering my weight will help. I'm one of those people that if you tell me no, I'm going to find a way!

I was diagnosed March 21, 2013 with dilated cardiomyopathy (they think it was peripartum cardiomyopathy, but I was diagnosed 9 months pp that they are calling it just dilated cardiomyopathy) with an EF of 15. My last echo in December 2013 I had gone up to 25-30. I am scheduled for another December 2014 and am hoping it is higher!

I am like you in that if you tell me no, I'm going to find a way also! My cardiologist doesn't seem to hopeful that I will be of normal levels, so I'm hoping to prove him wrong.