Good day everyone.
My name is Ed. I'm a 44 year-old male, living in the Fort Lauderdale area. Last September, after a few weeks / months of feeling bloated, and after being some medication (atenelol) to treat my high blood pressure, I started to develop edema around my feet & ankles. I was also having real trouble sleeping at night. One morning, I woke up and tried lifting my legs to help deal with the edema. I immediately felt a strange tingling sensation in my left arm and just felt "woozy." I awoke my wife & asked her to take me to the emergency room. It just didn't feel right.
They admitted me, commented on how green I looked and after several tests, extracted almost 8-10 liters of fluid out of me. They transferred me to another hospital and admitted me to cardiac ward. There, I received a cardiac cath, but was told that there were no blockages. However, they informed me that my heart was enlarged and that my EF was between 10 - 15%. I heard the word "transplant" muttered in hushed tones. I was terrified. I was released a week later and began a combination of Carvedilol (now on 2x 12.5 mg; twice a day); Entresto (began on low dose; am now on 49/51 mg twice a day) and Aldactone (25mg 1x a day). Almost had one fainting spell, but slowly felt better. At this point, was on short-term disability leave. I was a VP at a multi-national, and for the time being, put my traveling to rest. I went into the hospital at 305 lbs; left with around 278 lbs...since then, I've managed to get down to 253 lbs and am still working towards my goal of 225.
Back in December, they informed me that the EF had improved to 25, but that I'd need to look at getting an ICD implanted. I'm embarassed to say it - but I freaked out. Sold the house, packed my belongings, and took wife with me to Europe (where both of our families live) hoping that a health sabbatical would help me heal. Fast forward to April, 2017 and my EF was recorded as 30 (via echocardiogram). But I could see that an ICD was still a possibility. Returned to the US.
Got re-settled. Found a new cardiologist. And she's been testing me (MRI, pet scan, etc.). Scarring on about 15%, EF measured at 28%. Heart inflammation. Her hypothesis was cardiac sarcoidosis. Got my eyes tested, got my lungs tested and during my recent ICD implant (Sept. 26th; Medtronic), they also performed a heart biopsy (3 samples taken). All those tests have come up negative for sarcoidosis...but she still wants me to meet with sarcoidosis specialist and talk about starting Prednisone treatment.
On this board, I've read countless stories re. the stress / anxiety of learning to cope with living with an ICD. Thank you for your submissions. In the few days post surgery, I'm coping "OK," but it's the fact that there doesn't seem to be any down time for me until I have to look at potentially starting a new round of therapy (Prednisone) which, as I've read, seems to have it's own drawbacks & limitations that's causing me to go slightly bonkers. Don't get me wrong, I'm grateful for every day & oftentimes, I feel quite good physically. But the anxiety of the unknown and continuing battle to try & get an answer re. long-term disability that have me at wit's end. I'm willing to go back to work - but i'm certain that the lifestyle (stress; lack of sleep; diet, etc.) helped lead me to all this. But life's too precious to give up. Those of you who have been willing to share & guide - thank you. It's meant all the difference in the world.