COPD Stage 4

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My partner of 38 years was diagnosed January 2014 while in the hospital because he couldn't breathe. I don't know what to do. He is overusing his oxygen now to the point he has CO2 Retention. He refuses to listen to me when I tell him he's using too much oxygen. He hallucinates all the time now and I'm afraid he's going to die. I talked with his oxygen specialist and all she says is, well, yes, he using too much but gives me no help. Just telling him he is overdoing the oxygen doesn't make him stop. When he screams at me and tells me he can't breathe I feel like I have no choice but to let him increase his oxygen level even though I know it's what's making him talk out of his mind. Does anyone have any advice for me?

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  • Posted

    Hi over using oxygen is just as dangerous as under using it.  Get a medical professional to explain this to him if he won't listen to you.

    Also tell him that oxygen doesn't help him breathe any better.  What it does do it to support his other organs which can fail if his oxygen level falls too low.   This is the reason why he was given oxygen in the first place. 

    As his organs have more oxygen he probably feels better and more able to breathe but it is an indirect result of the oxygen rather than the cause of it.

    Overuse of oxygen is very dangerous  and you have to make him understand that.  Call a doctor out if he refuses to listen.  x

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  • Posted

    Hi David I too am a retainer and I was warned not to go above 2L, I've always been on 2L but at times had to increase to 4L when active eg; showering etc but now I daren't increase . He's being very silly not listening to you but the health professionals should be insisting on this. It's awful when you can't breathe but he is making himself worse by doing this. Do you have a community nurse visiting? If so then ask her to explain fully the consequences and advise him. It must be very frustrating for you and I hope you get the help you both need. You are both in my thoughts, take care
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  • Posted

    I am so sorry to hear that your partner has to go through this. I could be wrong, but is he afraid or trying to escape (hallucinations)? It is very difficult to accept the reality that this disease is permanent. He may need to look at more positive things such as, rehab or future options, such as lvrs (lung volume reduction surgery) or lvrc (lung volume reduction coils) or lung transplant (only if he prefers). But, I think over using oxygen is very dangerous, and his doctor should talk to him, and make him aware of what under or over oxygen can do to someone. 

    I am wondering if he could feel better if he learned how to do purse-lip-breathing exercises? This is a practice type of exercise for the lungs and is done daily for at least about five or ten minutes, which can eventually cause a person to breath better by using their diaphram muscle, which is located directly under the lungs. I had rehab and they taught me all sorts of things, but this (plus using the stationary recumbant bike daily for 20 minutes daily) helped me greatly, and has been on my daily schedule ever since.

    I was also informed that pursed-lip-breathing helps to lower that CO2 retention. I noticed it in my last blood test, it went down 4%, which was great for me, since my breathing was harder labored too before I began the pursed lip breathing exercises. Also, the acidity (chloride) went down in my blood due to the CO2 retention going down.

    The recumbent biking at rehab helped my lungs by making my muscles surrounding the lungs grow stronger (plus the diaphram muscle). I felt a great different using the bike daily at slow speed (not resistance) for about 20 minutes a day. The recumbant bike helped also by making me feel more stronger, mentally and physically...it did such wonders for me that I purchased one for a wonderful price on Craigs list.

    I no longer have to attend Rehab due to having my own biking and exercising equipment. My family, we never use our living room, because we never watch tv in our living room, since we have our own tv's in our own bedrooms. Because of this, we have recently turned our living room into an exercise room, and it looks beautiful, and we all love it, and use the living room more too! 

    Maybe you already know about the pursed lip breathing exercises and your partner has already been to rehab, but I just wanted to share about a few things that has helped me, and hoping it could possibly help your situation too. I realize we are all different and have many different situations too. But, when I was in rehab, the majority were just like me, and they all benefitted along with myself with these techniques.

    Also, I have checked out, low volumn reduction surgery, and, low volumn reduction coils (which is expected to come on market possibly sometime next year). Sometimes I read on internet, or watch on You Tube videos, but it helps me to think optimistically, and realize that this world is full of hope and things can happen, who knows?  I love reading about the later, coils, one since it gives me so much hope! But, I've also found it is best to not allow fears or anxiety consume us, and to think positively, since this also gave me sooo much strength too.

    Take care, you are very sweet for taking care of your partner, since your partner needs you so much now!

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    • Posted

      Hi Brenda, reading your message is a great help for me as a patient of this kind of desease. I learn to increase my hope by means of following different tips every one shared..Really this site is very helpful and I thank all people sharing their experiences here. 
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    • Posted

      Brenda, Thank you, thank you for so much wonderful information. We go to the VA for treatment and the therapist has never mentioned pursed breathing exercise. I will definitely have them start that. May God bless you and keep you healthy and safe. You'll be in my thoughts and prayers.
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    • Posted

      Cecile, Thank you so much! I also agree, that I have also benefited so much from others on this site too. I am glad to be of help to you, and possibly others too. For me, the pursed lip breathing is probably one of my most favorite things to do, especially when panic try's to crop up within me, and, simply, when I can't breath as well, possibly due to having a sick-day, or not-feeling-up-to-par day. I think pursed lip breathing is powerful. Just be sure that when doing the pursed lip breathing to pull in the abdomen while breathing the air out of mouth part of it (forgot to add this to original post..sorry). Cecile, God Bless you and Take Care! 
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    • Posted

      David, I am so happy to hear that he is going to the VA for treatment...hoping he is in rehab too! Several years ago, when I was first admitted into the hospital for this terrible disease, and when I was new to not breathing (third stage), their was a very sensitive nurse, who recognized that I was not taking my new change optimistically (who could?), and she educated and coached me about pursed lip breathing. At first, it didn't seem to work well, but she insisted that I would find it as a very powerful tool in the future, in which she was very correct! In rehab, the technician also taught me pursed lip breathing, and we used it for learning many other things such as, climbing stairs, etc. It seems that I have gotten use to not breathing as well as before, sometimes I think we adjust to having little air and don't recognize it, as we did when first having it. The more far we are removed from the starts of it, the better, I think. But, one thing I never could get use to is not being able to walk very far, and, having to wear oxygen tubes 24/7. I have seen the CO2 go up in my blood work, but as soon as I stopped using higher level of oxygen, it seemingly went down in my next blood work, so I must have been lucky. The chloride level in my blood work went down too, meaning that the acidity in the body went down also, which is good. I hope this will happen to your partner too....some good breathing exercises may help with lowering the CO2 too. I gave that credit along with lowering my oxygen in the past. Ask your rehab or therapist about the 'Pflex' and/or 'purse lip breathing exercises'. I hope this helps, and please ask if you need anything. God Bless you and your partner, and I will be praying too! 
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  • Posted

    Yhat's a dreadful situation you're in!   If he won't listen to you would he listen to the specialist?    

    Or how about showing him your post?  Would he read it do you think?

    I don't understand the reference to you "letting" him increase the oxygen level:  doesn't he do it himself? And hard as it must be for you, if that's the case it's his choice.

    Can you get some support for yourself?  It doesn't sound as if you can change what he's doing unless maybe you can do it calmly and with love when he's not out of his mind and hallucinating.

    All the best and please let us know what happens

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    • Posted

      Hi Jude, First, thank you for responding.

      What I meant about oxygen level is that he starts screaming and yelling that he can't breathe. At that point I'm afraid his lungs are shutting down so I feel I have no choice to let him increase oxygen level.

      He was just put in ICU for five days and now he's in rehab. However, while he was sedated in ICU I found his clothes they had put in a bag and when I went to get them I found sic cigarettes in a pack and six more butts in his pocket asking with a lighter.

      Now I know why his breathing was getting so bad was because he was sneaking and smoking and I never had a clue because he must have done it while I was at the store or maybe doing yard work. He has always had an addiction on some sort, be it cigarettes, liquor, or drugs.

      I am meeting with his care team tomorrow morning and I am not going to let him my tell them about his many addictions and that he desperately needs more than just treatment but counseling to help him to survive.

      I can't believe he was able to hide the fact that he was smoking again. I never dreamed that he would ever smoke again since cigarettes is what gave him this disease to start with. Sometimes I think I want him to live more than he does.

      How do you help someone when I guess they don't care if they live or die obviously?

      Again, thanks for your concern. Dave

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    • Posted

      Dave, he does sound self-destructive and maybe you're right, that you're more concerned about him living than he is.   To be honest, I don't think you can help  him much more than you already have, maybe it's time to look after yourself for a change?

      The secret smoking must've been a shock but having seen patients with iv lines standing outside hospitals in the cold in their  hospital gowns and smoking,  it's not that uncommon.   Addictions are powerful and nicotine is one of the worst.

      Please, take care of yourself

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  • Posted

    Hi David so sorry to hear that it a hard one cos you can see he problem

    struggling to breath so your damed if you do and damed if you don't I it

    was me try talking to his doctor and let him know or go to his oxygen

    specialist boss or someone above them and see if they will help cos you

    don't know if what he doing going to make it worse there my be

    something else they can give him with the oxygen that will help him

    Good luck let me know how you get on Susan x

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