Emphysma, how quickly can it progress?

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My dad has kidney failure and since having a transplant in 2013 (which has since failed! Currently at 12%) then his aorta tearing in 2014 he has been breathless, just getting out of breath from walking short distances. In December he seemed to suddenly get very bad with this and ended up in hospital where they diagnosed him with Emphysema, he also has right pleural effusion and a small amount on his left lung. Since he was diagnosed he has deteriorated quite significantly and now struggles to eat 3 mouthfuls of food without getting out of breath and struggles to even stand up! I thought Emphysema was quite a slow disease? Could this be something else? On a X-ray they said there was irregular markings on his lungs but weren't worried about these as the same markings had showed up on a scan a couple of years ago and there had been no changes. Is there anything we can do to help him?

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14 Replies

  • Posted

    Hi, very sorry to hear about your dad, very hard to know what you can do, is he on oxygen, and what did the hospital say about treatment
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    • Posted

      The hospital havent really said anything! Just that it is only going to get worse not better! He isn't on Oxygen which I can't understand as he keeps getting hospitalised and getting put on it! Last time he was admitted his oxygen was at 83% so they left him on it over night then sent him home the next day! He has said to me that he doesn't want it yet because he doesn't want to rely on it! Because he is struggling to breathe he now suffers from really bad anxiety and can have easily 10 panic attacks a day! I just want to help him but don't know how!

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    • Posted

      Hi again, I don't really know why your doctor hasn't put him on oxygen, he should have it, it would help him a lot, saving struggling to breathe, is he bedridden, because there are mobile oxgen containers, for walking about with

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    • Posted

      He just sits on the sofa cant get about without a wheelchair and cant get upstairs, they are ment to be sorting him out with a recliner chair and a bed for downstairs, he needs one the can be altered as he cant lay flat down on his back as that is hard for him to breathe.
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    • Posted

      Clare, I think you should see your local doctor, and see what he can do, but I really think oxygen, will make all the difference, I'm not on it at the moment, but may have to myself in the future, when my breathing gets worse, lots of people with COPD, are on it

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    • Posted

      Hi Sorry to hear of your Dads problems.

      Have read all the replies on here, but please be very aware that these are only our thoughts based on our own experiences.

      WE ARE NOT MEDICALLY QUALIFIED. 

      The only way you will get oxygen is IF it is recomended by a health professional and that will be based on a number of tests that would be carried out first.

      I don't think, judging from your comments that this would be a problem, BUT get your doctor to refer him to a Respitory Specialist ASAP.

      Without this, it is very unlikely that you will just " get oxygen".

      You even need a mediical certificate to purchase a portable oxygen concentrator.

      There is nothing wrong with using oxygen when it is prescribed, but it can be detrimental if used without medical consultation.

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    • Posted

      Thank you for your response! My dad is currently back in hospital! Was rushed in with a suspected stroke thankfully it wasn't that but has anemia and requires a blood transfusion! They can see that he needs to have oxygen at home and are going to get it sorted for him I believe! They also said he has advanced emphysema what does this mean? He was only diagnosed in December! They also said we need to talk about resuscitation as they believe that if he goes into cardiac arrest they don't believe it would be beneficial for him!

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    • Posted

      Sorry to hear your latest news on Dad.

      You must understand that his emphysema has not really progressed at a rapid rate, its been that way for a very long time by the sound of it.

      With all his other health probems he really is in a very poor state.

      Being asked to complete a final health document is becoming more the norm.

      I have also completed one of these as I certainly do not want my family members to see me resusitated only to become a vegatable.

      I would much prefer to die with dignity and not leave my family the decision.

      The word advanced could mean just about anything. My own lung capacity is now only 20% of normal, BUT I still do not need oxygen unless I am in an aircraft as my normal readings are 94.

      They usually only supply oxygen if your normal blood/ oxygen readings are consistantly low. ie 84/90.

      You must feel that you are in a terrible position and you are. There is nothing more that you can do for him and must therefore act on what the doctors are advising.

      I really do wish you well and I hope, that along with others on this site, are never in this position.

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    • Posted

      Thank you for your response! Last night when I went to see him in hospital he had had the blood transfusion but felt his breathing had become more difficult so I had a look at his notes and his stats were the best they had been in a while with a ready of 97! Is it right that he can feel worse yet his oxygen level be at 97? Thanks for all your comments aswel! Really appreciate it!
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    • Posted

      Hi clarew04, if your husband needs oxygen he is risking his health and wellbeing (not to mention his life) further by not using it.  That is if he is prescribed it.

      To determine if he needs to be on oxygen, he should be properly assessed and this requires a referral from his GP or specialist to include an arteriel blood gas measurement test this measurement will help determine if your husband does require an oxygen prescription.

      Prior to requesting an arteriel blood gas measurement test, you may consider ( as already suggested ) buying an oxymeter.  Check your purchase against the doctors or respiratory nurse for accuracy.  Also check with medical professionasl how to use the oxymeter at home to get an accurate reading.

      From what you are saying you should be discussing your husbands situation with his GP for ongoing treatment and assessment, regarding his breathing difficulties and his anxiety attacks.

      Keeping a record of oxygen measurements and daily panic attacks may be most helpful for his doctors.  Just say to the doctors what you have said here.

      Referring to his mobility, he may well find with proper blood oxygenation (if it is required), and OT assessment  and guidance on exercise he may be able to achieve a better quality of life than he is experiencing at this time.

      So sorry for the recent hospital stay, unknown if your husband has reached advanced senior years and his lungs are hugely damaged, but do be advised, and ask the medical professionals what they would recommend for his recovery / comfort / treatment.  

      Without trying any further treatment offered / prescribed should your husband decide against it, then he will most likely continue experiencing what is happening to him at this time.

       

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    • Posted

      Yes, people with copd can feel worse even when blood oxygen levels are ok and 97 is fairly good.    

      You have now been told since the recent hospital stay your husband has advanced emphysema and oxygen at home will be arranged for him as required.  

      But again if your refuses to use it it will harmful to his  life and not using it when it is required can cause cardiac arrest.

      Do be guided by what medical professionsals advise.

      It sounds like your husband has reached a stage where he just needs to be made as comforable as possible, but do speak with professionals concerning his care needs.

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    • Posted

      excuse spelling errors I am tiring myself.
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    • Posted

      replace all reference to your husband with your Dad, sorry
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  • Posted

    Hi there is nothing wrong in having oxygen coz you need it.  Why suffer needlessly?  Oxygen isn't to help him to breathe but to protect his other organs.  Has he been referred to a consultant?  If not I would ask for that,  but it does sound like he needs oxygen. 

    Have you got an oxymetre?  This will measure the oxygen level in his blood.  They are around £20 on Amazon.  If his sats (oxygen levels) regularly fall below 88% then this is dangerous.   Oxygen will help him live longer and have more quality of life.

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