AT MY WITS END WITH WORRY

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I am a 24/7 carer to my husband.He has had emphysema/bronchiectasis for the past few years but now everything has changed for the worst.  He is on oxygen 24/7, various settings for various activities but in the early hours Thursday morning he waws rushed into hospital critically ill with carbon dioxide poisoning.  He had pneumonia and an infection called Sudamonus. I was asked, if he had a heart attack, did I want him resuscitating, I said of course I do, you have only had him here a few minutes and want to kill him. What has happened is that my husbands lungs are now no longer working, they say he does not have much lung left and that is diseased and even though he is taking in oxygen to improve his sats he is holding carbon dioxide as his lungs cannot get rid of it.  He is wearing a life support Oxygen hood to do this job for him and to cleanse his body.  They are fighting the infection as well.  We have been told he will have to wear the mask at home through the night to keep cleansing his body of the carbon dioxide.  What I need to know is when his health has improved and he feels more like himself, can he still drive our car.  We will have a ramp installed so he can drive the scooter to the car and he can then just climb in.  I want his life to be as normal as possible.  I hope someone can help.  

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  • Posted

    You are not alone. I am 34 and have had COPD for too long. Myself, I have developed a problem with my hip that makes me feel ~70. I am not, however, I am 34 and you should believe that your husband feels the same. You should as well. To the both of you, "Sleep well and wake. From Ken".

     

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    • Posted

      Thank you but the trouble is I am trying to make my husband look forward to being able to get out and about again but at the bottom of my heart I know that this is going to be impossible and since the doctors in the hospital discussed DNR with him it has knocked all the life out of him.
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  • Posted

    My dad suffered a severe exacerbation after a car crash a few weeks ago (lucky to get out of it alive, actually) and was in hospital for a month.  During this time the doctors had the "unpleasant conversation" with both me and my dad regarding DNR, because that's the stage we are at now.  Now that he's out, the strategy now is just to surround my dad with all the things he likes, foodwise, hobbywise, whether they are expensive, unhealthy or otherwise - in his condition now does it really matter??  Making what time is left count is what matters. 
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    • Posted

      I am so sorry, it is a terrible position we are in.  We are doing the same, my husband is now in bed all the time, surrounded by his lap-top, television and every medical item known to man.  The only thing I am disgusted with is that not one of the NHS people who monitor him have been in touch since he was discharged last week, our community Matron knows the position but i never heard from her, I rang the community respiratory team who deals with him and have been told they are not an emergency service and to ring 999, all I need to know is what I can safely up his oxygen to whilst at rest as the readings they told me to use don't work anymore, I feel as if I have just been left to my own devices.  I am 72 years old, he was discharged from hospital after not walking for a week and getting bed baths to me being his 24/t carer again, not one person asked me if I need help. I am sleeping top to toe with him as there is not enough space to sleep normally with all his pillows, I am at my wits end.I send your dad my best wishes as I know exactly what he must be feeling, knowing that he is nearing the end of his life and what you, your family and me and my family and others like us aregoing through.
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  • Posted

    dear sheila,

    the carbon dioxide build up in your husbands body could have an adverse effect on his heart.  This may enlarge on one side and eventually if worst comes to worst he may suffer a heart attack.  If he can get enough oxygen into his system in time, then the chances of an enlarged heart will lessen.  Sorry to be the bearer of bad news but I hope it helps you understand it.

    Richard

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    • Posted

      Hi Richard, the right side of his heart is already damaged, we knew this 15 months ago.  I expect him to have an heart attack every time he goes through this, but he pulls through, that is why they asked about DNR because they said shocking him would make things worse and bring him back to be in a worse condition than he is now.  All my husband wants is to be able to see his family and drive his beloved car but driving, I think, is now out of the question.  I contacted the Matron and she is coming in the morning.  Like I say, I am his 24/7 carer, have no help at all and I am shattered, even when he was in hospital surrounded by doctors and nurses all he wanted was me. He has turned down help, is afraid to let anyone else sit with him as they don't do the things the  way I do, so it is draining.  Thank you so much for replying.
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  • Posted

    Shelia I went through the same process with my Mom. She had pulmonary hypertension, which cause right sided heart failure (congestive heart failure.) anyway through this ordeal I got a degree in biology/clinical labotary science to understand the physiology of COPDs. Your husband is in acidosis build up of CO2. Try using a small amount of baking soda (NaHCO3, sodium bicarbonate) to help adjust the pH. Another thing I've been looking at is serrapeptase, it a great antiiflamatory. 
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    • Posted

      Thank you so much for your reply but sadly my husband died last Saturday of acute respiratory failure and pneumonia.  Yes he was in acidosis as his lungs were just about non-exsistant and could not dispel the CO2, he also had right sided heart failure. He died very peacefully in my arms with all his family around him and we all got to say our goodbyes and how much we loved him.  That is the only thing that comforts me now, after being a carer for years I am completely lost, it has always just been me and him as our sons lived away and we didn't fully tell them what we had to do so they only saw him fully washed and dressed, sitting in the room with his oxygen on laughing and joking with them, they never saw the other side of his illness. They are non too pleased with me for hiding it from them as they say they could have helped us more if they had known what was going on but we didn't want them to put their lives on hold as I know what it is like to bring up a small family and to be a carer for my mother, you don't have time to breathe and I didn't want to put my sons through that.   Now I have time on my hands I am trying to keep busy, catching up on the cleaning I could not do for three years, I just cleaned where I saw and it looked okay, now it is time to get stuck in, at least if I don't stop I don't think.  Kind regards.
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