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Ron

Short of breath - How and when do you have it?

8 posts in this topic

How many here experience SOB (Short of breath) ?   I get it every day with physical activity like going up a flight of stairs.  Walking does not do it.  Stairs are really bad.

How and when do you experience it?

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Hi Ron,

 

In the beginning, before I was diagnosed with Scleroderma, but just felt generally under the weather, a shortage of breath and a dry unproductive cough were one of the first symptoms that I noticed. In those days, I was very fit and I remember, whilst out with my dogs, walking up a very steep incline and absolutely gasping for breath. What was so worrying was that I would normally have sprinted up a hill like that without even thinking about it. I think that was the first time I really had an inkling that there was something radically wrong with me and quite possibly if I hadn't been so fit, I would have dismissed the shortage of breath as unfitness and one of the penalties of getting old.

 

Thankfully, because I was so fit at the time, it was picked up quickly and although at one stage my oxygen/carbon dioxide diffusion was 48%, I didn't have to use supplementary oxygen, as my lungs were in such good shape, despite the fibrosing organising pneumonia. My last lung function test (about two weeks ago) showed a diffusion of 80% and this has been stable for the last three or four years.

 

My consultant remarked that you could pull people in off the street with worse lung function than me!! :wink:


Jo Frowde

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I get short of breath upon exertion and use supplemental oxygen while sleeping and when walking places. Even with the O2 I get out of breath going up flights of stairs or even slight hills. If I am carrying extra weight, like bags of groceries, I get even shorter of breath. I have interstial lung disease and pulmonary hypertension. My diffusion is down to about 27%. 

 

I have sets of stairs in my home but can manage going up them without the oxygen. The longest flight is 9 stairs. I am about to schedule a sleep study as I have never had one, and my PH doctor is adding Letairis to the Adcirca. It will take a few weeks to get approved but it seems like the combination therapy is more successful. The strange thing is my CT scan has not changed since 2013, my PH is mild and my Echo is good and no one can figure out why I have the increased shortness of breath.

 

Jo, I am so happy you are doing that well!

Ron, have you been tested for pulmonary hypertension? I am thinking you have had the usual pulmonary function tests...?

 

miocean


ISN Artist

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Jo and miocean,

Thanks for the reply.   I have not been tested for pulmonary hypertension yet.  Had a PFT done in late June and scheduled for a Echo late this month, also waiting to see a lung specialist.

Just wondering how others are coping with SOB.  I went grocery shopping yesterday and had no issues that I could remember. I could have had SOB but I didn’t remember if I did or not, or it was not bad enough to remember.

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Hello Ron

 

I had SOB back in 2009/2010 but from heart failure. I got out of breath in conversation and moving around the house was all huff and puff. I already used a wheelchair outside because of mobility issues, had I not, I would have had to because of the SOB. I remember having a 6 minute walk teat before I had my biventricular ICD in and boy, oh boy! Why it never occurred to me to say "actually I can't do this because I am in excruciating pain and I can't breathe!" I'll never know.

 

Anyways, it's a difficult symptom that can be helped with less activity and maybe oxygen until such time as you see your specialist? I know my cause was very different from yours but I remember that it was unpleasant and made me feel debilitated. It's one thing being debilitated, another to feel it.

 

I hope this helps.

 

Take care.


Amanda Thorpe

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Amanda, my heart doctor said he wants me to do exercise everyday; he doesn't want my muscles getting so out of shape that SOB will come on so easy. I don't think I am at the point for O2 yet, but we will see what the lung doctor says.

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Ron,

 

I just replied to another post of yours asking about testing for pulmonary hypertension and see your answer is here.

 

The shortness of breath issue is interesting. This afternoon I was able to go to an appointment that involved going up stairs and back with no issues and went into a large store, walked to the back and stood in a long checkout line without my oxygen with no problem, yet earlier in the day I was short of breath with my oxygen walking up a slightly angled ramp. 

 

Go figure.

 

miocean


ISN Artist

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miocean,

My SOB is unpredictable, last Saturday I went grocery shopping a lot of walking with a heavy basket, and had no problems.  I work at a computer all day, so I get up and walk around to prevent blood clots.  One day I walked around and lifted my legs up high like an exaggerated march for only about 10 seconds, and I was SOB from that.

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