4 hospitalizations in the last 60 days

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My mom has end stage COPD.  She was diagnosed in September of 2013 when she ended up on a ventilator for 7 days with pneumonia in both lungs. After being released from the hospital she was permanently disabled.  After that she was hospitalized about every 3 months with exacerbations.  Last September she was hospitalized with Pneumonia again.  This really knocked her back.  She has 20% lung function and is on oxygen 24/7.  She take duoneb in the nebulizer 4 times a day and pulmacort twice a day.  She has been on prednisone for 16 months straight which is really taking its toll on her body.  Recently she has had major exacerbations.  She has been hospitalized 4 times in the last 60 days.  I am very concerned that this is the beginning of the end.  Has anyone had experience with a loved one through the end stages of this disease?  I would love some information.  Thank you.

   

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  • Posted

    Hi Daisy

    I am not going to lie to you.  I think your mum is nearing the end and I am so sorry.   You cannot live with a lung function of less than 6% and an exacerbation will push her below that soon.    I personally haven't experienced it but 3 of my good friends online died at end stage copd and it sounds very familiar.

    She ought to be getting palliative care ie a combined team which is patient centred and is aimed at reducing her suffering and making sure she is as pain free as possible.   If she is fine, if not you need to see her doctor and ask for it.  You can always google it.   I know they take great efforts to make her death as peaceful as possible so she won't suffer or die gasping for breath which is a blessing isn't it.

    Meantime hard though it is spend as much time with her as you possibly can and comfort her as much as you can.   

    Remember to take care of yourself at this stressful time and try and get as much rest as possible.   Stress can play havoc with your system so be prepared for this.   

    This is an awful situation for you and the rest of your family to be in so pull together and comfort each other.    

    I am sorry I can't say anything more cheerful to you and it is possible that hopefully she will have a bit longer - be guided by what her doctors say.   

    Lots of love and hugs.

    Bev xx

    Ps  I am usually here so please pm me if you want to.  

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    • Posted

      Thank you so much. I appreciate your honesty. This has been hard for sure. My 12 yr old daughter is having a very hard time also. I have her attending counseling. Thanks again for the kind words.
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  • Posted

    I feel for you, daisygirl, this must be really hard foryou.   That's a very late diagnosis for her to now be in end stage.   I'm very grateful that I was diagnosed when I'd lost 30% of lung function and have managed to keep it at that for a few years now.

    I think both you and your mum and rest of family need to be prepared for her to die fairly soon:  I'm sorry if that sounds blunt, but you did ask and I think you know that anyway.

    You will have lots of support from this forum and I hope also the information you're after, which I'd be interested in too.  A pulmonary nurse or community nurse might be able to give you more of an idea of what to expect.

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  • Posted

    Afternoon Daisie! Reading aboouut your Mother & what your going through has bought tears to my eyes this is very sad what your both going through, I haven't experianced what your going through & I dread faceing the last/end stages of  this disease it is most horrid from the knowledge I've gained so far! All I can advise is just carry on supporting your Mum & being by her side as much as you can which I'm sure your doing already anyway but don't forget your self neither try if you can to have some time for your self aswell though this must be quite differcult I'm sure! I do hope your getting all the support you need for your Mum & your self! My thoughts are with you both & we are all here to offer emotional support aswell we are here for you! xx
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  • Posted

    Hi daisygirl,

    I can tell you of my experiences. For the last, approximately, 30 years I have lived with only 30 % lung function due to permanent damage. Never smoked, breathed second hand smoke in my growing up home, have been at deaths door 4 times, was born with bad lungs, have been hospitalized literally hundreds of times, and am still alive. The level of chronic suffering has not been easy or pleasant and there have been times when, out of pure exhaustion, I have pondered giving up. 30 years of steroid use has taken a huge toll upon my body, so now I try not to go into the hospital for large doses of steroids intravenously, but opt instead for steroid injections of long and short acting, because I can receive those safely every three days and it does not do the same harm as the other method does.

    While I think I qualify to offer advice, it still remains that we are all different and we cannot predict the future. I am so sorry your mom is suffering so and bless her heart and yours because it must be terrible to watch her suffer and wish for something miraculous to happen that would bring her comfort. A good pulmonologist is key.

    I have taken care of myself throughout my adult life. I have researched natural remedies and am using the greatest medications for COPD, asthma and emphysema faithfully and I refuse to die from this. I went to an allergist, I have searched for ways to strengthen my immune system and I have learned to go to my happy place visually when my breathing or lack of threatens to panic me. I have practiced breathing exercises.

    I sure hope your mom's fighting spirit is strong because that helps. And I have learned to make the most out of suffering and the loss of mobility because I cannot breathe. When I am forced to sit around, I find things to do with my hands.

    I hope your mom can find her balance. Tell her I am with her in spirit, and you are a fantastic daughter!

    💛 Dawn, USA

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  • Posted

    Hi daisy, my thoughts are with you both at this time, it must be very hard. I have had copd for about 10 yrs now I'm on oxygen 24/7 and unable to do very much at all but hopefully I'm a long way from the stage your mom is at now. It's frightening when you can't breathe and it must be very hard for you to watch your mom suffering. I have a community matron who keeps a check on me and she's always just at the end of a phone which is reassuring, do you have any help ? Take care and stay strong, xxxxx
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  • Posted

    Hi Daisy.

    I saw your.post and wanted to reply as I understand what.you are.going through. I lost my mum just over a year ago to COPD she was only 61 and was diagnose 10 years previously and gave up smoking straight away. It was one of the worst experiences of my life however we were continuously told is that each person with Copd is individual and the end of life experience is also individual as it isn't a predictable illness. Therefore it probably isn't fair I go into to much detail.

    But while mum was extremely ill I desperately wanted to hear from other carers who had any advice or just understood what I was going through but was unable to find it. So if you have any questions or just want to chat then I will do what I can to offer support.

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