It started with an inability to breathe. It was early December of 2013 and after a few days of Mucinex, nothing had changed. I didn’t feel anything in my chest, but I had to elevate my head to breathe at night. Something was definitely wrong.
A quick stop by the medical department at work and I was rushed to the ER because my oxygen levels were so low. It’s amazing how fast you get a room when you tell them you can’t breathe.
A few hours later, I had been diagnosed with asthma, prescribed an emergency inhaler, and told to call my doctor. They also commented on my swollen legs. I told them my legs were always a little swollen.
When I got home, I realized that my normally swollen ankles had become swollen calves. I asked Dr. Google, who brought up lots of pages on congestive heart failure, something that normally hits the over-65 age group. I had every symptom. CHF can even cause asthma-like breathing issues.
I mentioned this to my PCP/endocrinologist (I’ve been diabetic for several years) in late December who said that at 32, I was too young to have CHF. I didn’t argue. He was a doctor, and one I liked a lot and trusted. How could he be wrong?
Plus, it wasn’t like I wanted to have CHF. I decided to let it go and ignore the fact that the quarter mile walk to the bus stop in the morning was becoming increasingly difficult. It was a very cold winter, and since cold air is horrible for asthma, I blamed that.
A month later, I was back in the ER with my legs so swollen that they were literally leaking fluid (which is about as much fun as it sounds). They diagnosed it as a staph infection and admitted me long enough to give me some IV antibiotics, before they sent me on my way with oral antibiotics.
Two days later, I looked worse, so it was back to the ER. They admitted me and told me they were going to up the dose of the antibiotic. The attending physician said that as a precaution, we’d check my heart, too.
Less than 24 hours later, I was told my heart was failing. They didn’t know why. CHF generally hits people over 65, with clogged arteries (mine were clear). When it hits people my age they either had chemo as a kid (I didn’t) or they were pregnant (not me).
It could have been the diabetes, the anemia I’ve struggled with most of my life, the sleep apnea -- it didn’t really matter. What did matter was that my life changed in that moment in ways I could not have foreseen. On the upside, I didn’t have a staph infection -- it was just that I was retaining so much fluid that my body couldn’t contain it.
I was in the hospital for about a week. During that time, I learned that a normal heart pumps out 55-70% of the blood in it every heartbeat. This number is called an ejection fraction (EF). The cut-off for heart failure is 40%. I was hanging out at about 25%.
I was retaining fluid because my heart wasn’t strong enough anymore to pump fluids -- blood, water, etc., through my body. As you might imagine, my habit of drinking almost a gallon of water a day was now off the table -- I was limited to 50oz of any fluid. My sodium allowance was restricted to 1,500mg a day. For someone who used to salt ramen noodles, I was not pleased. Plus, many of the “diabetic friendly” foods I had grown to love, cottage cheese for instance, were now off the table due to high sodium levels.
It also impacted my ability to move. I’ll be the first to tell you that I’m a fat girl. I don’t hate my body or myself. Before I got sick, I was an active fat girl. I did the Chicago Triathlon in 2011 and while I was close to last place, I finished. I love riding my bike, swimming, and just getting gross and sweaty working on my dad’s lawn.
All of those things were now off the table.
While I lost 60 pounds of water weight in three weeks after diagnosis, walking continued to be a challenge and anything more than walking was dangerous. It was incredibly difficult for me to give up the endorphin rush, but I was sufficiently motivated by my lack of desire to die.
Before I left the hospital, armed with four new medications, they told me that I needed to find a cardiologist and that if my EF didn’t improve significantly, I was looking at having an ICD -- a miniature defibrillator -- installed in my chest. It would go off if my heart started, “beating in a way that was not life-sustaining.”
To say that I was unprepared for this, and for most of what had just happened, is an understatement. I was diabetic, yes, but the “take a pill or two every day” kind of diabetic. I am not on insulin and while I can’t drink regular soda or go on a potato diet, the impact of the CHF made the diabetes seem like a sugar-free cake walk.
That said, one of the hardest things to deal with concerning my diagnosis was that I felt very alone. People don’t know what to say to a relatively young person who has just learned they have a severely life-altering diagnosis. They don’t know what to say when the battle is never really going to be over. There is no “You’ll get through this!” when I will have to watch my water (now at an 80oz limit), watch my sodium, and weigh myself every day for the rest of my life. There is no “other side” of this.
There was also the balance between wanting to be “okay” and be seen as “normal” and the fact that I sincerely could not do things like take stairs easily. For a time, the elevator in the two-story building I work in was broken and I discovered my co-workers were secretly mountain goats. They would run up the stairs while it took me 5 minutes and I was panting at the top. I am fiercely independent and I hated the idea of looking “weak,” but the truth of the matter was that I was weak.
Thankfully, my boss, whom I had worked with for 8 years prior to my diagnosis, was fantastic and continues to be as I’ve had a few ER trips, a few doctor visits, and a whole lot of blood work I’ve had to miss work for in the last year.
Co-workers have offered to teach me to make my own hot sauce (most commercial brands are loaded with sodium), get ice from the cafeteria for me (sucking on ice makes my water limit seem higher), and a few were just there when I needed to talk.
A co-worker who lost her husband suddenly a few years ago told me about the stages of grief and how it was okay to be angry and scared and sad and that if I needed to talk, she was there. This was good, since I was incredibly angry, scared, and sad at times.
Some people in my life basically cut me off when I got sick. It’s no fun to hang out with someone who is so limited in what they can physically handle. A few reappeared when I started feeling better, but the damage to our friendship was done.
I also met some fabulous people, though, and have developed new friendships that I know can withstand stress. I don’t feel so alone anymore. I’m also feeling better physically. My last heart function test has me at 51% -- almost normal -- though I still get tired more quickly than I used to. I wanted to train for walking a half-marathon this fall but that idea was met with disapproval from my cardiologist (whom I love), but maybe next year. He’s pleased with my progress, so I will be too.
The biggest lesson the diagnosis taught me is that I’m stronger than I thought. My life wasn’t exactly easy before this, but I had never encountered anything like what the CHF brought into my life. It would have been very easy to basically blow off the doctor and pretend the medications were enough and eat what I wanted.
As it is, I’ve learned how to cook (sort of) so I can stop eating all the prepared foods that are loaded with salt. I am active, even if I’m not up for long bike rides yet. I’m grateful every day that the medications did work and I did not need an ICD or a transplant. I’m hoping I have another few decades to live and it’s good to know that I can probably handle whatever life can throw at me.