Heart Failure

BabysBaby2003

Is anyone with heart failure or heart disease using MFP? I'm 41 years old and trying to lose 15 lbs to qualify for a transplant if needed but want to lose 50 or more. Always looking to talk to people in this kind of situation.

karkaskompetisie

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

FHelenD

Hey! Afraid i'm not in the same position as you but did have major open heart surgery for mitral valve repair) 5 years ago and now losing weight (was thin before) to look after my heart! Feel free to message me or add me and i'll be as much support as i can!!

lindanewland37

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.

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BabysBaby2003

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!

nutmegoreo

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:

PennyVonDread

I have inherited unclassified cardiomyopathy. My heart stopped beating at 21. I survived, I'm 22 now. I can manage my hypotension and weak heart with weekly exercise and diet mostly, also added salt, lots of water, and a few supplements here and there. I had heart failure when my family switched to a low sodium diet for my father's dietary needs. I suffer chronic anemia and few other inherited complications. I didn't even know I had anything going on with me until I was hospitalized at 21.

I gained a bunch of weight on the supplement drinks that were prescribed to me. I've been slowly losing the weight since I stopped taking them (I didn't need them anymore). It's crazy. It can happen to anyone at any age.

BabysBaby2003

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:

Thank you. I've certainly found out how strong I really am through all of this. I guess that is what keeps me going and motivates me every day. Good luck with your journey as well!

BabysBaby2003

Reading all the comments, I realized how resilient we all are. To go through such a scare but just keep going is amazing. I met a man who is a patient at the hospital I work for who is awaiting a heart transplant and has the LVAD right now. He has become my inspiration b/c he keeps going and does the things he loves like ride his Harley when he feels up to it and go out with his lovely wife. He has to lose some weight yet to qualify for a new heart but he is doing it! Now I see even more people for inspiration!

Toni8t

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:

rowlandsw

So far i'm lucky but congenital heart failure got my grandpa at 82. His dad died before he was 65 and he lost at least one brother to heart issues when he was young (young enough i wasn't even born). I'm not sure if that's what got his older brother or not though. The way i retrain water reminds me of grandpa towards the end so it's always in the back of my mind that i need to get my act together but so far the ekgs and everything else say my heart is surprisingly strong.

deksgrl

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.

Toni8t

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

sassyjae21

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:

sljohnson1207

I am turning 40 soon, and I have idiopathic dilated cardiomyopathy that showed up when I was pregnant with my now 15 year old daughter. Please feel free to add me.

My EF is now 50-55%. I was/am on Coreg and a diuretic. I was on Aldactone/Spironolactone, but after 11 years had very serious side effects that if you'd like to discuss, please PM me. I am now on Dyrenium instead.

My EF was very low during and after my pregnancy, and bounced around a bit. I think the lowest may have been around 20, but since I had HMO insurance, they wouldn't cover as many Doppler Sonar Echocardiograms as the doctor would like, and we couldn't afford to pay out of pocket.

I'll tell you what they did for me. Put me on those meds above, sodium restricted diet, NO strenuous exercise. The exercise restriction was because my cardiologist did not want me to keep overworking my heart because it was enlarged and weak. He wanted me to heal. And heal, I have. 50-55% EF is low-normal. I am able to do most activities without much trouble now.

Keep in mind this took a lot of diligence and consistency with meds, sodium restriction, and exercise restriction.

I imagine that depending upon circumstances and type of heart failure, a cardiologist may treat someone else differently. This was MY experience, and it helped tremendously. I urge you to thoroughly discuss all treatment options with your physicians.

Hophead43

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.

earthboundmisfit

I have congestive heart failure and cardiac arrhythmia. It doesn't hinder me too much though.

csuhar

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.

BabysBaby2003

My heart failure is from chemo also. My first episode of chf happened 2 years after I was done with chemo. I really feel like a cardiologist should be involved in cancer patients care. My lowest E/F was 15% and is now 31%. Being diligent with meds, excercise, sodium intake, fluid intake, stress management, and rest I think is helping. Good luck and I hope this was found early enough to be corrected.

georgi611

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.