• Posted by anonymous on March 9, 2023 at 12:14 am

    Does SOB symptom always include lower Oxygen levels?  How does one know if O2 level is low besides using a Pulse Ox?

    Also, how does one know if they might be having an exacerbation event? Is there such thing as a mild exacerbation (that still should be seen), or are they always pronounced (as in need the E.R.) ?

    Right now it’s only constant mild lung discomfort (like they are aggravated by breathing smoke or dust when there isnt any) and mild SOB.  O2 is always good on the pulse ox.

    This is all kinda new, PF is mild on xray, and not sure what to be looking out for as a new patient.

     

    Thank You

     

     

     

    anonymous replied 11 months, 1 week ago 9 Members · 9 Replies
  • 9 Replies
  • Sue Ann

    Member
    March 9, 2023 at 8:31 am

    Chris,

    My situation sounds very similar to yours. SOB a lot, but O2 is low to mid 90’s. Dr’s explanation leaves something to be desired.

    I have the same questions!  Thanks for starting the thread.

    S.

  • samuel-kirton

    Member
    March 9, 2023 at 9:05 am

    I am not sure what your diagnosis is other than PF. I am an IPF patient currently 19 months post-transplant. The relationship between shortness of breath and oxygen saturation levels rarely correlates to provide a meaningful diagnosis. As you have demonstrated, increased shortness of breath does not indicate a low oxygen saturation level. Both are worth noting to your care team.

    Not all exacerbations are equal. In my experience communicating a change in your condition to your care team early is important. I was diagnosed with pneumonia and I started communicating as soon as I saw my first symptom. As my symptoms progressed they were aware of each change and ultimately made a decision to hospitalize me. They know me and where I am on my journey. Communication is something my care team has asked for since we began our relationship.

     

  • Millie

    Member
    March 10, 2023 at 10:09 am

    I’m somewhat confused, too. I always swam laps in our indoor pool and PF has put a stop to that. However, I have started going into the pool with a noodle (flotation device) to reduce my exertion. I paddle around for 20 minutes using my arms and feel fine and have no shortness of breath. However, when I come out of the pool and check my oxygen, it says 80. I don’t believe the accuracy of the oximeter. I do have to use oxygen 24/7 since diagnoses last year but only 2 litres. Pulmonologist tells me I have 80% lung function. Can someone explain this to me. Thank you.

  • adele-friedman

    Member
    March 10, 2023 at 10:24 am

    SOB does not always correlate well with oxygen saturation, although for me, it usually does. Millie, regarding the pool, I don’t swim, more do water aerobics type exercises, sometimes using the noodle for certain things. I once brought a hand towel and my oximeter poolside to check quickly as I worked out. Is it posssible you are climbing up pool steps and walking to where your oximeter is, becoming hypoxic during that process? I hope you will check what O2 sat is in pool.

  • karen-martin

    Member
    March 15, 2023 at 4:34 pm

    SOB is also linked to accumulated CO2 in your body.  This is usually the case where COPD or emphysema is involved. That may not cause your O2 levels to look particularly low.  If you need your pulse-ox to tell you that you are SOB, be thankful.  I have progressed to the stage that much activity causes my O2 to drop into the 70s or even the 60s if I persist.  Be careful of those low readings.  They cause damage that accumulates.  Not a good thing.

  • jeffrey-carver

    Member
    March 16, 2023 at 2:52 pm

    There can be other factors at play, as well. It wasn’t until a year after my diagnosis that I was told to get an echocardiagram, to see if I had pulmonary hypertension. That resulted in further testing, which revealed that I have a small opening between the right and left atria of my heart, resulting in less blood going to the lungs than should be the case. (This is apparently fairly common, but often undiagnosed.) I also apparently have both regular and pulmonary hypertension on exertion, which does not show up with routine blood pressure checks. All this helps explain why my need for O2 seems to be greater than my level of fibrosis would indicate.

    This is all new information to me, and I don’t yet know what the recommendations will be for medication to control the hypertension.

    All this is mostly to say, sometimes you need more information than a CT scan showing fibrosis will tell you.

     

  • msherbert

    Member
    March 16, 2023 at 7:16 pm

    O2 levels can change in an instant. During my last PFT a coughing fit caused me to pass out. My levels are generally in the low 90s but dropped to 40 on the monitor and recovered in about 15 seconds according to the tech. I thought my cough was fairly well controlled (25 episodes a day rather than the prior 125) but my pulmonologist increased my meds to help cut the frequency more. I had no idea how dangerous this was. Symptoms are not always indicative of O2 levels.

  • peter-cheong

    Member
    March 16, 2023 at 9:41 pm

    I’m Peter and have similar symptoms as yours. Diagnosed with PF since 2015, CT scan showed fibrosis at both bottom lopes. Subsequent CT scan in 2019 show little deterioration. I’m not on any medication.
    In Dec 2022 after returning from Vietnam, I developed acute SOB with a bad lung infection. Three subsequent courses of antibiotics didn’t help much. But O2 concentrator does relieve the bad cough. To me the SOB is due to drop in SPO2 level. I now use a nebuliser with 5ml 0.9% saline for about 4-5 mins and this helps.
    SOB has improved since as less  phlegm is discharged now. Also slow walking and deep breathing exercises helped. I’ve stated herbal medications and have seen some improvement.
    My 2 dimes worth I think SOB is caused by excessive phlegm in the lungs, at least in my case. I hope you find relieve and all the best from us in Asia.

  • anonymous

    Member
    March 16, 2023 at 10:54 pm

    thanks to everyone for the replies it really helps.

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