A Breath In, A Breath Out

Have you ever seen someone struggling to breathe as part of their illness? I’m referring to people living with ‘end stage’ lung or heart disease or advanced cancer with breathing difficulties.

Living with end stage illness or late stage cancer does not necessarily mean you are terminal. Often, a person is not. People, especially those with the various chronic lung diseases struggle for several years like this. The anxiety that accompanies these attacks seems to be written off as ‘it’s just anxiety.’ I had a very bad episode of asthma once. I quit doing what I was doing pretty quickly and stayed still; my heart was racing. This was a moment I would call absolute fear, not anxiety. For the next few weeks while I was still sick, I remember being very scared it was going to happen again if I did too much.

If you are close to someone with respiratory difficulties for whatever reason, think about your answers to the following questions.

What did the person look like when he was having an episode of hard breathing? Did he breathe rapidly? Turn red in the face? Blue? Pale? Begin to sweat? Did you see the front of his body from his face to his abdomen moving hard and quite a bit? When you looked him in his eyes while you tried to calm him down, did you see fear in them? Was it hard to look in his eyes as this happened? Did you feel helpless?

How did you feel as this was happening? Was your heart beating faster and louder? Did you feel an adrenaline rush? Did you worry about what you were going to do? If you were in the hospital, did you run out of the room to get the nurse because it was so scary? If you were at home, did you want to call 911? Did you have to go to the hospital for yet another flare up of his illness?

This person you love, if he just stays still does he still have trouble breathing? Is it only when he gets up to go to the bathroom or goes to sit down at the table to eat with the family that it happens? Do you notice that he can’t quite finish his sentences because he doesn’t have enough breath to finish them? Have you gotten used to him having to take extra noticeable breaths throughout conversations just to talk? Has it gotten to the point where he could just be sitting down or laying down and he still has small flare ups of breathing with significant difficulty? So if he just doesn’t move then he may be able to control it? Do you find yourself saying things like “If I just stay with him and calm him and breathe with him, it usually only lasts about 15 to 30 minutes.”

So what it seems to me is this. When someone has difficulty breathing or breathes pretty normally then has periods of significant distress, this person and their family are probably living in a generalized state of worry at the very least. Is that fair to say? When someone has trouble taking in full breaths and they know they get wiped out going to the living room to watch TV, they may just stay in bed.

When it’s hard to breathe, why would a person want to go to all that trouble to eat and breathe? Have you seen someone eat who has hard time breathing? As a family member, are you scared that when they are eating that they may choke on a little piece of food…or that it may go down the wrong pipe because they cough a lot when they are eating?

If someone has a hard time breathing, do you think they are going to do the things they like to do, sit outside and watch the birds or talk with the neighbors, go out to eat, take a nice walk, play with the grandkids, and eat how they want?

People who live with chronic breathing difficulties live differently than those of us who don’t. They live with a certain level of stress and anxiety most of the time. They are very limited in the things they can do to feel productive in their life or to enjoy it. This is what I am told. They worry because they know it will happen again, it’s not an if, it’s a when.

I know people don’t have to live like this. I know it because I have seen it over and over and over again . People’s lives change when they havea very conservative dose of of a medication (i.e. morphine) in a class of drugs called ‘opioids.’ From one day to the next, yep, from one day to the next, their lives can be different.

Ask anyone you know who works in the palliative care or hospice field.