What does it feel like to be short of breath?

I never gave much thought to the term “short of breath” before I was diagnosed with heart failure.  I am of course a short person.  I do sometimes have a short temper.  When listening to scientific/technical explanations I tend to have a short attention span.  Anyone who had more than a one minute chat with me during my Federal career knew that I was able to articulate entire pages of speech at the speed of light without stopping to take a breath.  So up until the Fall of 2012, while I was short in some things, it wasn’t breath.

More than just being a chatty, wordy person, I also never seemed to tire when I was exercising.  I became an avid runner when I was in my late 30s.  I recall that I always breathed through my nose and never through my mouth, and I always had a consistent and energizing air flow.  Even when I was running 8K and 10K races, I don’t recall ever stopping to catch my breath or gasping for air.  Breathing was just something that came easily to me whether I was sitting at my desk or exercising.
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During the last year or so before my diagnosis, I remember that I started the practice of walking up the stairs to my apartment and to my office at work.  My apartment was on the 10th floor and my office was on the fifth floor of our Headquarters building.  I don’t remember that I ever felt the need to stop during my upward climb because I was overcome by a need for air.  I just bounded up the steps like there were only a few.  I didn’t realize how lucky I was to be so healthy.

My luck ran out when I was kidnapped by congestive heart failure.  I have to admit that shortness of breath was not the first thing I noticed.  It was the incredible fatigue and light-headedness (also known by that intriguing word syncope).  I would say that it was a month or two before I retired that I began to understand what shortness of breath felt like.  I could no longer bound up even two flights of stairs without feeling incredibly winded.  Walking up steep inclines in my neighborhood also became more challenging even though I had the pacemaker to keep my heart pumping steadily.  So what was going on? 

Here is what the website Heart Failure Matters has to say on the problems I began to experience in 2013:
Shortness of breath occurs because blood in the body backs up in the blood vessels, which return blood from the lungs to the heart, due to the heart not pumping blood out of the heart effectively.  This causes fluid to leak into the lungs, also known as congestion.  In case you think they are kidding, this is a warning I have seen:

• If you experience SEVERE and persistent shortness of breath, you should call for emergency treatment immediately.  If you are experiencing shortness of breath and tolerating less and less activity, you would contact your doctor or nurse for advice.

The Mayo Clinic website adds this important detail:

• The term "congestive heart failure" comes from blood backing up into — or congesting — the liver, abdomen, lower extremities and lungs. However, not all heart failure is congestive. You might have shortness of breath or weakness due to heart failure and not have any fluid building up.

In my case, I have enough doctors’ reports that sprinkle the term “congestive heart failure” throughout its pages.  So I believe that it is likely some fluid buildup is causing my shortness of breath. 

What does it feel like to be short of breath?  It’s an elusive feeling to explain.  I have found articles on some websites where people describe feeling like someone is standing on their chests.  I can’t say that I’ve ever experienced something like this.  I mean, I’ve never had someone stand on my chest, but that sounds like it would involve some pain and I never have pain when I am short of breath.  Instead, it feels like the passageways for breathing have narrowed significantly but my body has stayed the same size.  As a result, It feels like I am no longer able to get enough air in to power my adult body.  I definitely need to slow down or stop whatever activity I am engaging in for a few seconds to catch my breath.  
 
I most often get shortness of breath when I am exercising in the morning or climbing more than 3 flights of stairs at a time (it used to be just 2 flights, so maybe I’m improving).  Fortunately, it never takes more than about a 10 second break to catch my wind and to resume whatever exercise or walking activity I was doing. 

I have also noticed that when I get winded during exercise, I sometimes experience an ache in my legs and arms.  I suspect that if my heart is not pumping blood effectively, this means that the blood flow to my muscle groups slows down.  The result is likely a fatigue in the muscle group and the ache that I feel.   The ache, of course, is increased a bit by exercising the muscles.  But there is no way I’m ditching the exercise.  I have just learned to deal with it. 

Probably the most pronounced shortness of breath episode I ever experienced was in 2015, and there was a very logical cause for this episode.  You see, I was vacationing in Italy with my sister, her husband and a friend.  We were touring Pisa.  What do you think the signature activity is that most people perform in Pisa?  If you guessed climbing to the top of the Leaning Tower of Pisa, you would be correct.  My traveling companions and I decided it was worth it for me to at least start the climb up and see how far I got.

I think it was around the second landing that I started to gasp for breath.  “I think I said something like, I can go further, let me just rest a second.”  But I was overruled.  So my sister and I went back down the stairs and waited while my brother-in-law and our friend climbed to the top.  I was disappointed, but I know we made the right decision.  At least I can say that I climbed the Leaning Tower - I just didn't go the whole way. 

There is one shortness of breath symptom that I do not experience, but I am always asked about it during each doctor visit.  The American Heart Association says that shortness of breath includes: “breathlessness during activity (most commonly), at rest, or while sleeping, which may come on suddenly and wake you up. You often have difficulty breathing while lying flat and may need to prop up the upper body and head on two pillows.”  So at each appointment, I will be asked how many pillows I use when I am sleeping.  The answer is always one pillow.  I am even comfortable when I in bed for a short time without any pillows.  (But I would never do a full night sleep without a pillow because I would likely throw my back and neck out of alignment.)  I consider it to be a good sign that my shortness of breath has been limited to when I am exercising or climbing stairs, and not when I am sleeping.  

Very occasionally, I get tired of taking all the heart medications and their side effects.  So I wonder what it would be like if I stopped taking them.  Then fate gives me a wake-up call.  So the last time I wondered about live without meds, I was doing some volunteer work.  I was helping a woman who was very overweight and walking with a cane.  Even though we were just standing still, she was gasping for each breath like it was the very last one she would take on this earth.   No more wondering – bring on the heart meds!  I want all the help I can get to avoid that experience of labored, and perhaps painful breathing.

​To recap, I do not know if I will ever get used to the feeling of shortness of breath.  It still takes me by surprise.  But I look at it this way.  I exercised for about 30 years and never experienced shortness of breath.  This has only been a symptom for the last 4 years.  So maybe I just need a little more time to get used to it.  But even though it still takes me by surprise, it doesn’t make me as anxious anymore.  Because now I realize that each breath is a gift, and as long as I can still draw a breath fairly easily, I’m ahead of the game.