Looking for people who have same heart issues as me

Hi, My name is Brenda .. I am 54 yrs old ... Let me start by going back in time. At 44 i was diagnosed with heart failure and only had 24% of my heart functioning. To make a long story short. I have had a pacemaker/defibrillator implanted 3x. My heart level is now functioning at almost 50%. I have atrial fibriallation 24/7 (they tried to control it and they zapped heart like 10x but drs can't get me out of it) So, i live with atrial fib, i have cardiomyopathy, and heart failure. have had an ablation and a ventrical ablation, i also have episodes of ventrical fib (they tried medication to control that, but am allergic to all 3 they tried) Those eposides i have like 1x a month. My pacepaker/defibrillator Totally makes my heart work. (heart completely wired) I am heart dependent on it. Without it i would die. My heart is in really bad shape. At one point doctors thought i should go on transplant list, but then decided my heart is working okay with the machine. I am at last stages of heart disease. I think its level 4.  I am on coreg, blood thinners, cholesteral meds, i think any medication needed for heart disease, i am on. I have also been slowly gaining weight which i know is no good for a heart patient. (I am not retaining fluid) Does anyone out there have same issues as me? How long do you think my heart can work with the pacemaker/defibrillator?  I know if i get snapped (which i haven't yet, due to the first abation) it will be from the ventrical part of heart) and that is heart attack which scares me. I currently see drs at "Arrythmia Associates" .. they see me every 3 months and i have a machine at home that tests my pacemaker weekly.  Am i at the last part of this heart disease and just waiting till i have heart attack or should the doctors look into other methods for me?  Any comments are welcome. I tried to give all the information on me i could as not to make this a 10 page question lol.  Thank You in Advance :)

[ed34]

Hi, and wow, that is some history. I don't think you are waiting for a heart attack to happen, but perhaps you meant cardiac arrest? I assume they discovered the cause of your heart failure at such a young age? seeing that you've increased from 24-50%. If the pacemaker is keeping your heart functioning, then I don't think you need an alternative, unless your quality of life is such that it drives you insane. It's obviously good that your pacemaker is checked so often, so I can't see a problem occurring there.
When you say that 24% of your heart was working, is this what they told you? or was that your ejection fraction? i.e. the amount of blood ejected with each beat. I just find it very hard to imagine a heart with only 24% of the muscle working across the ventricles keeping enough blood flowing?
Maybe logic doesn't follow but normal EF for the left ventricle is around 55-70%, so this would be say 30% with 50% muscle removed. This is heart failure already. With three quarters removed, wouldn't this reduce the EF to around 15% which would require at a minimum a left ventricle assist pump. Maybe I'm just thinking about this wrong, it just seems amazing :)

[simplyme54]

Hi, Thanks for responding .. My sister at age 45 passed away and her autopsy showed she had cardiomyopathy that she never new she had and was the cause of her death. All us brothers and sisters got our hearts checked as they said was hereditary. I was the only one who they found something wrong with and when i got checked i was in heart failure at the time, so in my eyes, my sister saved my life as if she didn't die from what she did i would of never got my heart checked and i would of died instead. I ignored the symptoms of shortness of breath and my heart beating out of my chest to just over doing at work or chores. I owe her my life!  My injection fraction was at 24% .. and immediately got a pacemaker installed. Since then my injection fraction is around 47% - 50%. The ventriclar ablation was for the left side to decrease the episodes i was having. The other ablation was so my atrial fibriallation wouldn't setoff my pacemaker as i have that 24/7.  I still have ventrical episodes but don't last long enough to get snapped.  I feel my heart has been burned beyond repair and is enlarged beyond repair which makes me constantly nervous about the what ifs. Doctors have always said i was too young to have these issues, but 10 years later i am still here, but am starting to get nervous as not sure how long these pacemakers/defibrillators work with an already enlarged heart. My quality of life has decreased to nothing. I get tired all the time .. cannot do things i used to. I am on social security disability. If i go shopping i drive one of those carts as i get out of breath. Need i say, i also have lung disease (copd, asthma, mild empysema). My weight gain is from being inactive and nothing i can do about it as exercise to me is just taking a shower lol ... Thanks again for your input :)

[ed34]

It looks like the cardiomyopathy is under control, where your EF is 50% which is in the normal range now. I assume that there has been 'some' permanent damage though from the disease, where the electrical system of your heart has been affected, but the pacemaker / ablation seems to have helped a great deal there. Pacemakers have no moving parts to wear out, so as long as they have power, they should be fine. I am very weak in knowledge with lung problems, but I wonder if you have ever been a smoker?

[simplyme54]

Hi Ed,
Thanks for replying again. YES .. i have been a smoker ... and still fight the cravings ... which mean, i occasionally have a cigarette .. i KNOW .. don't lecture me there. its tough. i know i hate to quit completly as if i have to get a heart transplant have to be smoke free for 6 months. its a hard habit to break and even though i have all these issues you would think it would be easy. but, any smoker will tell you its not that easy. the stress of things and having a cigarette help relax you. 2 yrs ago i was in the hospital for bronichitis and the day i was being released .. (doctor was signing my papers) a nurse came in my room .. and to this day won't tell me how she found me. But, apparently i went into respiratory failure .. guess i was found hanging on to my life. I have no memory of this!  i was put on life support for a week and spent another 3 weeks in hospital.  (thats a whole other story) And, i can't believe through that it hasn't made me give them up all together.  I would say i smoke like 2 a day. Just even writing this , i am like, YOU NEED TO QUIT COMPLETELY .. such an idiot.  Thanks again ed for your comments ... its nice to get some advice from another source :)

[ed34]

I know the craving, did it for 30 years, heavy too. After my first heart attack I gave myself two choices, live or smoke. I'm still here so it's obvious which one I chose. I kept one in the cupboard, it seemed to make me feel less pressured knowing it was there if I got too desperate. It was hard, but if I made it, anyone can. I used to suck the life out of all those cigarettes. I think it's mostly your lungs causing the problems. If you can't give up, then how about the patches or electronic cigarettes? you still get the nicotine, but at least you wont get all those nasty smoke chemicals into your lungs. I'm sure after just 48 hours you will start to feel a difference.

[ted733]

Hey, you beautiful, brave lady! Please don't think I'm bragging or anything, but I quit smoking 6 months ago using nicotine lozenges from Walmart (house brand - $31 for 108 tabs, including tax). Sure I want to smoke a Marlboro menthol every single day - just watching an actor smoke in a movie drives me to distraction! But one minute after I start sucking on one of those lozenges, the craving goes ALMOST away - enough to keep on moving on anyway. Start on them, keep on them, and tell your doctor you quit, even if you cheat a little now and then. Get on that list, girl. Please, please. Your story breaks my heart, makes my pathetic little problems so lame by comparison. Straighten your butt out and FLY!

[simplyme54]

Hey Ed,

Yeah i have those patches .. They are on top of my bedroom dresser .. just staring at me, waiting for me to open them. Talking about things on here has given me alittle more insight into seriously quitting.  I just bought a pack today, so i will try and go to 1 cigarette a day .. i take a few drags and put it out, then light up again, and do same thing until all that is left is that filter hehe .... I tried those electronic cigarettes and the vapor burned my lips hmmm .. maybe was telling me to have the real thing lol

[simplyme54]

Hi Ted,

Thanks for the comments .. I never heard of those nicotine lozengers (however you spell that word) lol .. I am going to my lung doctor appt this friday and i will certainly stop by walmart and pick up a pack.. Will let you know how they work for me. I also have patches like i was telling Ed that are sitting on my dresser ready for me to open. I bought them long time ago and there they sit. And, for the record, no ones problems are pathetic as you say. Problems are problems no matter how little they seem or how huge they are. We all have struggles in life. My friends are always there for me when i need them and i am there when they need me, no matter how small the issue is.  

[simplyme54]

After thinking about those lozengers ... I wonder, WHEN i do go on a heart transplant list .. i know you have to be a non smoker for atleast 6 months or you can't get on list. Now, when they do blood test to see if you smoke, would the nicotine from the lozengers show up as if you were smoking?  I wonder .. hmmmmm

[ted733]

Yes, indeed, Brenda, the docs and insurance companies regularly check blood, urine, saliva and hair for nicotine and its byproducts, especially cotinine (all this I've just learned).
Ask your cardiologist for his permission to use lozenges (or whatever); and then the tests will be meaningless as long as you have an order in writing. Don't you dare smoke on the day of an appointment - Scope or Listerine won't hide the odor of smoke from your clothes or the residual in your lungs. And if you MUST have that one or two a day, do it outdoors or out in the hallway. You can't see it or smell it yourself, but the smoke diffuses in the air to your clothing, towels, etc., and many nonsmokers have a sense of smell like a bloodhound.
Very helpful sites are Google Answers (nicotine and cotinine tests) and ***************** (How long is nicotine detectable...?

[ELatimer]

Hi!!! May I ask you, what is your weight now and what do you eat? In this stage you should give your heart a break from working so hard. A very simple diet, easy for your body to break down will make wonders for your health! Believe me it worked for my heart!!!

[DenTek]

It sounds to much to be true.  You are one brave women.  Have you tried the Cleveland Clinic in Ohio?

[DenTek]

I hope you are getting treatment from the Cleveland Clinic in Ohio.  They are the best in the country.  I will be praying for you.

[Mom2four85]

did they diagnose you or find your sister had Hypertrophic Cardiomyopathy/HCM? sounds like it may be with the genetic link from your sister...

if so; the HCM association has a lot of great information and resources (4hcm.org) and referrals to dr's who specialize in HCM

just curious because some of your symptoms sound like mine -  I have the obstructive form of HCM; shortness of breath; chest pain, palpitations/arrhythmia's - racing/forceful heartbeat, lightheadedness/fainting

[biabou]

Hi everyone I was just wondering if anyone get the same symptom as me, just need some feed back really) I was told by the hospital that I have got an enlarge heart cardiomyopathy. Had few test done this year and am due to see the heart consultant in the new year January 2013) now what's been happening is I keep getting these pain in my arms at times and the pain are more like pins and needle and it makes my arm feels dead and where I can't breath, so to help me breath I have to hold my head between my knees and blow into a paper bag: at times it would last for 25 minutes the pain)  do anyone knows what it is? Thanks ( SYLVIA )