What a wild ride the last month has been. I was born with a congenital syndrome named Holt-Oram. This caused 2 ASDs (heart) defects that were corrected with open heart surgery when I was 7. I also had 2 thumbs on my right hand and both hands/thumbs are slightly deformed and my arms are not quite as long as they should be, again a slight difference that goes mostly unnoticed. When I was
3 1/2, they removed the 2nd thumb. This was a real thumb, not a skin tag, one I could move and use. They waited until I was that old to figure out which one to remove, which one would look more natural. At 37, almost 38, I was diagnosed with arrythmias and a low heart rate (25-30) and wound up with a pacemaker. I was told at the time that with this syndrome, there could be other heart problems that come up as I age.
Mid Oct, I started having some breathing problems. Our weather had turned colder and that's usually when my asthma gets triggered, so I put it down to that. Over a week and a half, it just got worse. I couldn't sleep unless I was sitting up, I got deathly sick every time I ate, walking any distance made me gasp for breath. I still told myself...it my asthma and kept using my inhaler. On 10/24, I walked upstairs to weigh myself, because I'd not eaten more than a few bites of anything a day for a week and knew I'd dropped a few pounds. I walked up my stairs, which greatly winded me, but when I stepped on the scales, I had gained 8lbs....?!? What?? This was when that little voice in the back of my head started saying..something's happening here. I chose to ignore it. A friend called me that afternoon and wanted to meet for dinner, so we met out. I ordered, but couldn't eat as I was so uncomfortable from not being able to breath well. I got mine in a take out and she and I walked out to my car. When she saw how winded I was, she begged me to let her take me to the ER. I told her no, let me go home & think about it. I went by the grocery store on my way home and when I almost passed out on my front patio from carrying in 3 bags of groceries, I realized that I needed to do something. I fed the cats and put out a full bowl of dry food for them, packed an overnight bag and headed off to the ER. I was in such distress by the time I got across the parking lot and in the front
door that I could hardly talk to the guy at the desk--who just so happened to be someone I had
worked with in the ER at Greenville Mem years ago. He immediately called for a wheelchair and they took me straight back, started an IV, gave me aspirin, clipped on an O2 sat monitor, popped on heart monitor pads, took labs....lots of activity. I had called my friend on the way there to let her know I was going, so I called my family from the ER. The doc came in and told me they were going to do a chest X Ray. I had been looking at my O2 sat numbers and they were normal. If this was an asthma problem, they should not have been. I asked him why they were normal, and he just looked at me for a moment. I said, this isn't my asthma, is it? He answered, no, you're in heart failure. For one of the few times in my life, I had nothing to say. I just stared at him, then said, what does that mean? He started explaining heart failure, but I told him, I know what heart failure means, what does this mean to me, my life, what do I do next? He said we would talk more once the X Ray was done. They did that then the nurse came in and gave me nitro and hung a bag of lasix. My step mom and some of the people I work with were texting me and wanting to know if I wanted them to come up but the friend from earlier lived very close by, so I texted her, told her I was scared and if her offer to come
up was still open, I'd appreciate the company. So, everything pointed to heart failure. The lasix made
me trot to the bathroom every 15 mins or so but every time I went, I could breath easier. Once they released me, I headed home and even with having to get up and dash to the potty the rest of the night, I slept better than I had in a couple of weeks. The next morning, I got back on the scales and I had dropped 9lbs overnight.
So the last 3 weeks have been a flurry of tests, cardiac echoes, pacer checks, cardiologist appointments, 2 day stress tests and in 2 days another pacer query to try and pinpoint when my A Fib started. I've found out that my ejection fraction, which was 55-60% 2 years ago has dropped to 25%, normal is 50-70% and I'm in a constant state of A Fib. I'm now on a diuretic, a blood thinner and 2 ace inhibitors. This coming Tuesday, I go back to the cardy and find out what comes next. This can
not be cured but it can be managed. It could also be a whole lot worse, so I'm trying to stay positive
and remember that.
