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I have severe emphysema diagnosed 3 years ago by CT scan.

Posted , 4 users are following.

jackie87522
jackie87522

Cannot breathe in after minimal exercise. Confused as told problem is with breathing out in this condition. Spirometry showed, I think, only mild airways obstruction but I gasp for breath after walking very short distance. Sats were 92 at rest and frankly,at rest I feel absolutely fine. Problem is when I'm not sitting still ie stairs, getting dressed/washed etc. Can anyone explain why. Respiratory nurse at hospital very vague and not really explained it..As I said CT shows severe emphysema. Symptoms have definitely deteriorated since diagnosis and I struggle on a daily basis.

0 likes, 11 replies

11 Replies

  • valerie_15986
    valerie_15986 jackie87522

    Posted

    Hi i have the same breathing ok when sitting but as soon as i start to walk or do any excercise I struggle to breathe my sats are 92vwhen sitting no one can undrdtand how you feel only you and when you see doctors your sitting and sats are ok and like you i struggle with day to day activity xx
    • jackie87522
      jackie87522 valerie_15986

      Posted

      Hi. Sounds as if you too are in the same boat as me. Received a couple of good answers to my question that I will be implementing. Hopefully,you can try these too.Take care.
  • hypercat
    hypercat jackie87522

    Posted

    Hi it sounds like you are a CO2 retainer.  This means that because you can't breath out properly stale air is still trapped in your lungs.  This obviously impacts with breating in as well as there is less space to get oxygen in. 

    With severe emphysema I am not surprised you struggle so much.  You need to concentrate on getting as much CO2 as possible out of your lungs.  I think there are breathing exercises you can do if you look on Youtube or just on the net generally.

    If not or it doesn't help you need to go back and see your nurse/doctor for help.  x

     

    • jackie87522
      jackie87522 hypercat

      Posted

      Hi thanks for your reply. I am going to enquire about Pulmonary rehab when I next see my respiratory nurse in about 4 week. Take care.
  • Vee2
    Vee2 jackie87522

    Posted

    I think you need instruction on pursed lip breathing and diaphragm breathing, ask your doctor, respiratory nurse about this, also ask if you can access a pulmonary rehabilitation education programme.  If you've already been on one when initially diagnosed and if in UK you can still get referral to PR again.

    This idea Always is to breathe out first, then inhale.  This helps empty the lungs of carbon dioxide allowing greater oxygen saturation on the inhale.

    To assist with walking, climbing stairs etc use pursed lip breathing with counting.  You can practice this, even when not being active, but it is very helpful when undertaking walking etc if you are very short of breath.  Exhale twice as long as you inhale, example exhale as much as you can first then (for example) inhale 3 exhale 6 etc.

    Regards washing and dressing when SOB severe, just take your time, do a bit rest a bit.  Until achieved.

    If you are managing your stairs, just climb 3 then rest, repeat until you get to the top.  Alaternative is a stair lift but really climbing the stairs is very good exercise however long it takes.  Once you stop doing any exercise you deteriorate even further, so just do what you can then pause then do a bit more using the pursed lip breathing as required.

    In addition its somtimes recommended that using ventolin 15-20 mins before activity just helps open the airways a bit more.  Use a spacer if you find you don't have enough breath when using the inhaler on its own.

    I hope some of this information helps you. it has helped me in times of difficulty.

    Check out you tube for "pursed lip breathing COPD"

    and for "diaphragm breathing COPD"

    also "Breathing exercises COPD"

    But your best bet to learn these is through a pulmonary rehabilitation course, this by GP referral, or respiratory nurse /consultant as it is in UK

    • hypercat
      hypercat Vee2

      Posted

      I will add one thing to your great reply Vee.  Although I am not severe many of my friends on another site are which is why I know about the possible CO2 retention problem.

      One thing many of them use is a full length towelling robe - a lightweight one which they just wrap round themselves after a shower or bath.  This saves the effort of drying yourself.  x

    • jackie87522
      jackie87522 Vee2

      Posted

      Thank you for your informative reply. I'll certainly try some of the techniques you suggest. All the best.

    • Vee2
      Vee2 hypercat

      Posted

      That would apply to anyone who experiences shortness of breath avoiding need for towel drying.  Not just co2 retainers.

      I use the towelling robe myself.  

       

    • ellen68007
      ellen68007 Vee2

      Posted

      Hi Vee. Just read your post. I am just new to all of this. I have just now figured out how to change an oxygen cylinder. I am NOT mechanical at all. Had to right down the steps. I have it now. Just suppose to use it on excertion outdoors. My question is why when I am having my dailey shower why am I experiencing shortness of breath? I am just standing there with no exertion. I find my breathing is compromised??? I am now having cooler showers and that has helped. I now don't take long showers. In and out like spook the cat. 

    • Vee2
      Vee2 ellen68007

      Posted

      Your oxygen supplier should have shown you how to change an oxygen cylinder if it is your own or you are doing so to help your spouse etc.  Yes writing down the steps involved is a good idea.

      Ask yourself the question why do you think you experience shortness of breath when taking a shower?

      For many of us the reasons are many shower or no shower.

      Air quality is poor.

      Airways have narrowed

      Inhaler meds required.

      Inhalers empty and you haven't noticed

      Humidity.

      Lung infection.

      damaged lungs generally 

      Showering is exertion for many, standing still is tiring for some, some use a seat in the shower with long handled wash aids.  Its all down to what helps the individual achieve the desired result. 

      I am sure you will figure things out as time passes.

      If shortness of breath occurs only in the shower.

      Only when water is hot.

      Only when standing too long.

      If SOB is ongoing not responding to prescribed inhaler medicine or other, speak with your doctor.

       

  • ellen68007
    ellen68007 jackie87522

    Posted

    Hi Jackie. I as well have the same problem on excertion. I just recently found out about pursed lip breathing. I also purchased a oxdimitre and I put it on my finger when I do go upstairs. You got some very good advice from these helpful comments. Now I just take my time going upstairs. A few steps at a time. Then do the pursed lip breathing. Then a few more stairs. One I get to the top then I sit for a bit. It has really helped. It's amazing just after a few pursed lip breathings how my oxygen levels come back up. The comment about excersize going up the stairs is very good because you are getting excersize. At first I was afraid to move around to much but now know just how important it is to get moving. 

    Take care and keep us posted. A great helpful group here.

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