I always say, my lung arteries are obstructed therefore when the right side of my heart sends the oxygen to the lungs, they cant fill up like they would with a normal person. That means my heart has to work twice as hard to get oxygen going, which explains why mine swelled up and was failing. Thats also why i would faint because the oxyen wasn’t flowing through my body like a healthy person. Most people understand that and i use a picture PHA canada printed to simplify it and with pictures that help understand!
I use the analogy from one of the PH campaigns (PHAware):
"#1 Unwrap a straw
#2 Hold your nose
#3 Breathe through the straw for one minute.
THIS IS BASICALLY HOW SOMEONE WITH PULMONARY HYPERTENSION FEELS FOR 1,440 MINUTES OF EACH DAY!!"
..... but I additionally let them know that their discomfort for that one minute is probably 10X less than how I actually feel!
I have never had someone I tell that to actually try it.....as I think they then begin to have a slight understanding of what it's like.
How do you feel after running? That’s me everyday.
I am with Stephanie. I give them straws and a nose clip. Then I tell them to walk around the block only breathing threw the straw. Most don’t make to the end of the driveway.
I would tell them to imagine having a serious problem or situation (such as not being able to breathe) which you know to be true but nobody believes you. Imagine having professional in this area repeatedly saying it's something other than what you know it is but you don't know its name. Imagine finally, in some cases after years, being told what it is but nobody else understands it. (You don't look sick). So now you have to explain. It's like swimming under an ice covered lake after taking a deep breath and as you swim forward you have no idea where the next break in the ice is which will finally allow you to get another breath. Would your chest pound? Would you panic? Would you feel desperate? Yep, that's what it's like having PH.
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