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Managing PH Symptoms
Does anyone have specific ways to manage the shortness of breath in PH? For instance, I’ve found that episodes occur most often after I’ve been sedentary for a while, and it helps to get up and “warm up” with light activity before I go on a walk; or I’ve found I can avoid tha most serious and scarey shortness of breath by just stopping in my tracks at the first sign of breathlessness. Have any of you found other ways to manage symptoms?
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6 Replies
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These are great tips, Judy! Have you ever tried diaphragmatic breathing exercises? I didn’t focus on building the muscle of my diaphragm until after my transplant. Having a strong diaphragm and breathing “correctly” can help with efficiency. Here’s a guide from Cleveland Clinic on diaphragmatic breathing.
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Thanks Kathleen! I checked out the Cleveland Clinic website. And a nurse actually told me about the pursed lips breathing.
On a slightly different topic, with PH is it usual to have good days when I can do almost anything, and then a bad day or two when almost no exertion triggers shortness of breath? I don’t understand how that can happen.
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Hi Judy
This up and down feeling of being able to do more some days than others is very common for a lot of us with PH. For me, this was one of the hardest things to get accustomed to because it felt like my body was on a constant roller coaster and the unpredictability of it all got really challenging to manage both mentally and physically. I have tried to strike a balance to help with this and have become conscious of the things that make me more tired through the day. On the “good days” I always thought I was Wonder Woman and made the mistake of doing too much which would just leave me so overly exhausted. I think it’s best to find balance on ALL days so there is a bit more of a happy medium. Remind yourself to slow down even if you think you can do more.
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Hello July, managing shortness of breathe with PH is very scary. You can get short of breathe doing just about anything for me bending over to pick things up or running the vacuum makes me sort of breathe. When it is really bad, I sit down with my pulse oximeter and just shut my eyes and breathe Usually I pick a quiet place if I can. I just relax with my eyes shut and after a while check my oxygen level. It may take a while to come up but it will. Ph robs us of so much and we have to be careful we don’t pass out. Sometimes with my shortness of breathe I get a headache which doesn’t help matters Dealing with PH is a 24 hour job and I am glad that there is this forum where we can discuss our problems. Take care and hang in there!!! xoxo
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Margie
I couldn’t agree with you more. I’m so thankful for these forums and allowing us a place to vent and feel less alone with all of the symptoms that we manage through the day. I also experience headaches with shortness of breath. Especially if my oxygen has been dipping frequently throughout the day. I almost wish that it would just pick whether my o2 levels want to stay at a constant high or constant low (preferably higher) but the flip flop of o2 levels does a lot to my mental health and also my physical health with symptoms being so up and down!
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PS Here’s a map of PH associations around the world
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