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.