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I have been living with CHF now since I was 22; it's been about 6 years going on 7.  I was first diagnosed with Viral Myocarditis after going through about 6 months of on and off pneumonia and bronchitis back to back to back. Then one day when I was trying to walk to lunch I couldn't even walk half of a block to a restaurant I was going to eat at and I knew something was wrong.  Thankfully my coworker and good friend Matt was able to take me to the hospital and after a few days and an echocardiogram it was discovered that I had an ejection fraction of only 8%. (Many of you will know that's low; the norm is 55%) The doctor gave me several intravenous medications in a hurry after I told him I wanted to do everything I could to try to get better. I was given a 50% percent chance to live or die at that point.

I was in the hospital for about 9 days and slowly started recovering. Over the years I was able to lose weight, quite a lot actually, but having lost weight too quickly I was given other problems such as my gallbladder needed to be removed and pancreatitis following soon after. The psychological ramifications of what had happened had their effect along with discovering that, a year later no less, that my Dad also had congestive heart failure as well that he had just found out about.  I have, since the pancreatitis, actually gained all of my weight back and struggle with it daily. I have to weigh myself daily and I have to track the amount of sodium and fluids that I take in.  Some days I'm better about it than other days I admit.

My ejection fraction now is somewhere between 10-20% from what I am told.  I have an ICD (defibrillator) and pacemaker in my upper left chest as well.  That took some getting used to knowing that I have that in there and that they'll have to change the battery someday.  I hope that it never has to go off and, thankfully aside from them testing it, it never has.  I have been considered for a full heart transplant and also for a heart pump.  I've been told I'm just over the qualifications for the pump (so no pump) and my BMI is too high for me to be considered for a transplant at this time so all I can do is try to lose weight and hope for the best.

That's not the most encouraging feeling in the world... weight loss is very difficult for me and I'm not even sure how I was able to lose so much weight in the first place, let alone keep that weight off.  The ramifications of getting a heart pump or a heart transplant just seem so... final.  With the finality of everything weighing on my heart and mind it can be difficult, at times, to stay motivated and to keep doing the things I need to do while fighting anxiety and depression.  All I can do is my best and hope for the best and in the mean time I wanted to share my story so others could share theirs and, hopefully, find some peace to themselves.  I may be encouraging at times and other times, well, not-so-much but I'm here and I'm living this life.

Please further this discussion by posting comments and I will try to update the blog as often as I can with as much as I can.  I will post educational and informative articles that will benefit those dealing with CHF and those who love and care for someone who is living with this disease.
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Tonya Palmer (Choc'lateDiva)'s profile photoLiving with CHF Indianapolis's profile photo
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I was told that I qualified for a clinical trial for the heart pump but for some reason it was put on hold. Not sure I was too fond of the idea but you have to do what you have to do I guess. +Tonya Palmer thank you too for sharing although I hate to hear about suffering I appreciate you coming forward and telling your story. We all sound pretty strong in my opinion, we just have to stay that way! :) And it's definitely a good thing to puzzle the doctors by defying the medical odds!
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American Heart Association
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Heart Warrior  - 
 
Are you a Heart Warrior or the parent of one? Out of 1,000 births, nine babies will have some form of congenital heart disorder. This is your community - your place to share your triumphs and struggles with other Heart Warriors and Heart Heroes. Give a shout out to the Heart Warrior in your life!
The American Heart Association explains congenital heart disease and congenital heart defects in adults and children.
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Mo C

Heart Warrior  - 
 
I am very relived that mental and emotional pain is getting attention from my cardiology department. Around the time of my 2nd surgery (7 years ago) I got very quiet, withdrawn, and hated myself but I didn't know that it was serious. No one told me this was normal to feel this way, that other patience feel like this at sometime. I was already a quiet teenager but after I got the news of surgery I felt like crap, different, a burden. I still didn't know other ppl felt the same way as me until I found the AHA message boards. Anyway, back then I was to ashamed and scarred to admit to my cardiologist that I hated my whole situation. I did have a nurse ask me if I was alright and said my parents are worried about me but I didn't budge on my feelings. I know (we) I try to look and stay positive and happy for friends, family and medical staff . But the thing is my mental state was far off worse then my physical state. The two go together, you need both states to work together to have the recovery you deserve. What I guess i am trying to say is that it is normal and okay to feel lonely and sad about health problems. others have been there before you. Tell someone you need help, talk it out! Show your hospital or facility that they need more pamphlets, books, newsletters or websites to encourage emotional and mental recovery.

Bringing to light the importance of the Emotional recovery is huge and should be taken seriously. I hope doctors of all kinds take the time to explain and/or recommend getting yourself on the path to emotional recovery.


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