In 2011, at the age of 40, I was diagnosed with congestive heart failure. It was the shock of a lifetime to say the least. The whole ordeal actually began several years earlier, throughout my 30’s. Every year or so I would wind up going to the doctor for one thing or another – usually back pain or a sprained ankle or something like that. And every time they would tell me that my blood pressure was high and I should get that attended to. The numbers would usually be somewhere in the neighborhood of 147/100. That was a pretty standard number to me, in my mind. But of course, I was reckless with my health and didn’t really care. I also enjoyed adult beverages too often and that would always go hand-in-hand with smoking cigarettes. In 2007 I finally went to a specialist and they told me that my “ejection fraction” was low and that I was at risk of congestive heart failure. They prescribed blood pressure meds and suggested a healthier lifestyle. Did I listen? Not really. I was active – bike ride a lot, always in the outdoors fishing, but continued a relatively poor diet, the alcohol and the smokes.
First Symptoms
In September of 2011, I had a very busy day which included a 25 mile bike ride and a 2-hour kayak trip. Later that night, I was having a beer and a cigarette as I usually did, when I suddenly felt a burning in my throat. It was so strange and came on so suddenly. The best I can really describe it was that it felt like my wind pipe was inflamed. I got scared and went to bed, hoping it would just go away. Well the next day and the day after that it didn’t go away. In fact, it got worse and by day 3 it was a full fledged, dry and hacking cough. And then, it started to get really bad. I couldn’t lay down horizontally without choking. Every time I laid down the coughing would be out of control.
I went to a clinic at a nearby drug store and was told it was likely bronchitis. meds were prescribed which wound up not helping at all. A few days later, and on practically zero sleep, I went to a family practice doctor who examined me and said “I sounded a little noisy up top” (chest area), but that it was probably bronchitis that needed to run it’s course. The next few days would become even more awful. I was totally winded walking 5 feet. I couldn’t make it up the 9 stairs to my apartment without having to stop and rest after 3 steps. Finally on a Thursday night, my mother and sister came to visit and saw what a mess I was. They told me they weren’t leaving until we went to the emergency room. And so I did.
Off to the Emergency Room
Upon arriving at the ER I wanted nothing more than to just get fixed and go home. They did x-rays and found both lungs were filled with fluid and said it was pneumonia. Wow! Didn’t expect that. They said I’d be in the hospital for a day or 2 to take care of it. I was very bummed but was so tired and exhausted I just wanted to sleep. Then, one of the doctors wanted to check one more thing just to be sure. I barely remember it, but the carted me off to a cold room and were rubbing something on my chest. Which I would find out later, was an echocardiogram.
The next morning, a doctor comes into my hospital room and says “get those fluids out of him, he’s in congestive heart failure!” It was all a haze, but my family and I were all in instant disbelief. What the hell was happening? What did this mean? The doctor, who did not have very good bedside manner at all, explained that my heart was very enlarged and unable to pump effectively. The fluids and blood in my body had backed up into my lungs as a result. Basically, I was drowning and would likely not have lived another day had I not come to the hospital.
The next few days after that were a blur. Doctors and family coming and going, in and out of sleep, and a lot of discomfort. Apparently that ejection fraction number had gotten much worse from a few years earlier. I seem to recall 19% as the number. That’s bad. Very bad. They cut me off from all fluids, including water. I was so thirsty but they needed me to get all fluids out of my body. Over the next 4 days I slowly got some energy and my wits about me. But here was the harsh reality… I was in full blown congestive heart failure. My heart was enlarged and things were bad.
The treatment plan would be a course of medications to control my blood pressure, heart beat, and fluids. And of course, I’d need to make some lifestyle changes. After a few days I was to be discharged wearing a vest called a LifeVest, which is a portable defibrillator. Since my heart was so weak, I needed to wear this thing in case I started to drop dead, literally. It was awful.
A Whole New Way of Life
As I returned home, my entire life was flipped upside down. I looked at my dog and started to cry and didn’t stop crying for days. I was a mess with a bad heart, was on a very restrictive diet, couldn’t drink or smoke, and had this damn defibrillator vest on all the time. Everything I read about congestive heart failure was terrible and the survival rate info I found was not good. I sought out a new cardiologist and found an excellent one. He explained that numbers I was finding online were not typical for someone my age. And that he’s had many patients survive and live long lives when they stayed the course with their meds and treatment. Well, I was determined to be one of those people. Aside from completely quitting drinking and smoking, I was going to keep that sodium content intake as low as possible for as long as it would take.
So began a journey. The psychological aspect of this whole thing was very hard. I felt so alone. I felt so weird having this “disease” that you only really hear about with the elderly. I found a therapist who specialized in individuals with health issues. Thank goodness! Because the mental aspect of the whole ordeal was becoming torture.
Low Sodium Foods?
Another frustration was finding low-sodium foods and recipes. Sure, there were some resources. But sodium was absolutely everywhere! I was used to a lot of processed foods, fast foods, I LOVED sandwiches of any kind, and loved eating out. But sodium was this culprit, in massive numbers, everywhere I looked. I had to do something.
I got a bread machine, because bread has a fair amount of sodium. I bought a Foreman Grill so I could make fresh meats with no salt. And so began another journey into the world of low-sodium foods and cooking. I learned a TON about food during this time.
A year after being diagnosed with CHF, i’m proud to say that my efforts to get better were rewarded with excellent reports from my cardiologist and testing which revealed my ejection fraction for above 50 (the low end of normal). Also, my heart shrunk. Yep, today it’s practically a normal sized heart. CHF is a condition that is not curable, but with hard work and dedication, a lot can be accomplished. And in 2017, 6 years later, i’m still going strong. I’m able to relax my strict adherence to the low sodium diet, but I found that food is so much better without all that extra sodium. With a little creativity, one can make some excellent meals.
Update: October 2022
It’s been 11 years since my congestive heart failure. And currently, i’m still going strong. My last set of test were about a year ago and all signaled “no change”, which is GOOD. That’s what we want. My heart’s ejection fraction is still slightly below normal, but that’s the way it has remained for several years now.
Overall, I feel great. At 51, I find it harder and harder to keep the weight off. I’ve always been a slim guy but that certainly has changed as my body has aged. I’d love to lose about 20lbs, so that’s something to strive for in the coming months.
Lucky, during this time of pandemic and Covid, i’ve been lucky to avoid getting sick (as far as I know) I still spend lots of time kayaking, fishing, golfing and enjoying the outdoors.
Arthritis has started to really make itself known in my body. My hands especially and my knees. Oh my goodness, sometimes getting up out of a chair can be tough on the knees. But, I still consider myself lucky and quite able.
Update: April 2024
It’s been quite a few weeks in regards to the heart. My last echo (August 2023) showed my ejection fraction at 40%. I did not like this at all. Doctor ordered a cardiac MRI and we attempted that this past March 2024. I couldn’t do it. I had NO idea I had claustrophobia like that. So doctor did a cardiac CTA stress test. I seemed to do fine, but the results showed otherwise. My bundle branch block screwed up the test’s ability to accurately show my ejection fraction and it also showed other issues, to which doctor ordered a cardiac CAT scan. Well, that test also failed to show the ejection fraction and showed a calcium score of 550! What?! And still more unknowns so doctor ordered a regular and invasive angiogram.
The angiogram showed no blockages, which is good, but if there had been, it could have easily explained the reduced ejection fraction. Also, the angiogram corroborated the echo ejection fraction of 40%. Basically, the heart is weaker.
So now we’ve started on Entresto. The idea is to then add Jardiance in the coming weeks.
This whole thing is basically what I’ve worried about for the past 13 years – the heart getting weaker. And it’s actually happening.
I feel just fine, so that’s good. Hoping and praying that the new meds will get that ejection fraction back up.