Drastic decline after chest infection - is this to be expected?

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Hi, looking for some insight for my dad who was diagnosed with emphysema some years ago now. Until Christmas 2014, he was coping very well, he was staying relatively active and was managing to walk a mile when needed (slowly and it was flat, but nevertheless he did it!). Just after Christmas he caught a rather nasty chest infection, which the doctor diagnosed as a virus. That stayed around for 3 months or so and was obviously very distressing at the time and really affected his ability to breath. He has been clear of any infection now for 2 months but we are not seeing any improvement in his breathing ability. To give an indication of the decline, he is now unable to walk the 8 metres or so to the bathroom without oxygen. There are further complications in that his heart is also playing up and his ankles are terribly swollen. The doctor has ordered a heart rate monitor for him but I'm not sure when that will arrive. I have two questions for any friends out there who can provide the benefit of their experience. 1) Is it reasonable to expect that my dad should recover a little better than he has so far - that he should get closer to his previous breathing ability. 2) I'm convinced that the heart and water retention round his ankles problem is caused by a lack of oxygen in the blood due to his poor breathing. Is that a reasonable deuction and is there any advice out there, (I'm in the process of convincing my dad to use his oxygen more). Thanks.

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11 Replies

  • Posted

    Hi Vaness,

    I'm not a Dr and of course can't diagnose bu his swelling is not from lack of oxygen. How old is your dad? I'd anything, he may have a bit of a tired heart from having to over compensate and work harder bc of his trouble breathing and his circulation may not be what it used to be. The only way to really know if he needs his oxygen is to purchase a pulse oximeter (goes on his finger) and some Dr's say if it gets down to 88%, some Dr's say if it goes under 90%, then he needs oxygen. It could be he only needs oxygen when he exerts like going to the bathroom or walking anywhere. If it's good while he's sitting still then...no. That's me....I need it when I exert. As long as he catches his breath back when he sits down or has on the oxygen then he's ok. But you really need the pulse oximeter. You can get then pretty cheap almost everywhere. Hope this helps some. Keep us posted!! Ladyjack51

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    • Posted

      Hi Ladyjack51, thanks for your reply. It's interesting what you say about the oximeter - he does have one of these and I'll investigate how he uses it. He's just gone 69 years old and he only needs the oxygen when he exerts, although before Christmas he hardly used it at all. He was rushed into hospital again this morning with an irregular heart beat but the ECG and blood tests came back as normal so he was sent home again. This seems to be a cycle that we are currently in and no-one seems to be able to help us out of it. We're all getting a little frustrated! Anyway, you have given us something to think about regarding the Oximeter - thank you:-)
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  • Posted

    Hi I am sorry to hear about your dad.  I can't comment on his oxygen use as am not on it except to say that he needs to follow his doctors instructions for using it.  

    Your father sounds quite severe and with copd any infections can further damage the lungs and it sounds like this is what has happened.  Having said that 2 months is not that long to fully recover from it and it is possible that he will improve a bit in time.   Copd is a progressive disease but he can do a lot to try and keep it stable.   Leading a healthy lifestyle with as much exercise as possible will help him to stay fitter. 

    I know exercise is very difficult in his situation but he does need to keep pushing himself to maintain maximum fitness. 

    I hope this helps a bit.  Bev x

     

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    • Posted

      Hi Bev, exercise and breathing is something that we have been talking about a bit lately. He's started the pursed lip and diaphram breathing techniques and we hope they will help. As you say, hopefully he will recover a bit in time but he needs to stay healthy:-) Thanks.
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  • Posted

    Hi Vaness,

    Sorry to hear about your Father.  I have to say that I have had a very similair experience.  I am 69 and was diagnosed with COPD four years ago.

    I took the view that maintaining a high level of personal fitness was the best contribution I could make, so I led a very healthy lifestyle with plenty of excercise and "power walking" at least a mile every day.  This helped and as long as I paced my activities I was managing very well.  I am also part of the Somerset Tele Health programme and am supplied with a mobile 'phone, blood pressure monitor and an Oxyiometer. The readings are automatically sent to a monitoring centre on a daily basis and if anything seems out of the norm' they are on the 'phone PDQ.

    All was Ok for three years until I got a severe chest infection in January.  This didn't seem to resond to penicillin, but steroid treatment did help.  However it kept re-occurring about every three weeks and never really cleared up.  The net result was that I was admitted to hospital as an emergency last month (5 months on). During this period my activity level dropped dramatically and even very short physical activity left me incredibaly breathless.  The upside is I am now firmly on "the radar" with local health professionals and I am seeing a consultant who is carrying out CT scans etc.

    Personally I am determined to get my fitness level back, and have joined a local Pulmonary Rehab' programme.  This is excellent as you do controlled excercises under supervision, and are with a group of people who have the same condition and are very supportive. All age ranges are there and conditions vary from mild COPD to folk on oxygen 24/7

    However Vaness, to go back to your original question, it is inevitable I am afraid that severe and repetitive infections will cause further lung damage which in turn increases the inevitable breathlesness.  Try and see if your Father can join a local rehab group, it does help.  Also try and obtain an oxyiometer, they are not expensive and do give a real indication of oxygen levels.

    Good luck

    Michael

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    • Posted

      Hi Michael

      Thanks for your reply, your experience sounds very similar to what we have been through. Reoccurrence of the symptoms, no response to penicillin etc etc.

      Things have escalated since I originally posted but I hope that the silver lining will be that my dad will now be firmly on the radar of local health professionals, as you so eliquently put it☺. Can I ask about the consultant that you are seeing, I assume that he is a pulmonary or COPD specialist of some kind?

      I think there are a number of actions we need to take. Find a rehab group so that his recovery cab be managed professionally, ensure that he also comes under the care of a specialist (COPD or similar). I'm also going to explore whether there is a mobile monitoring service in his area as this sounds like just what we need. He does have an oxyiometer (it's a big clip that you put on your finger?) but I'm not sure how he uses it. I will explore this further.

      Your post has really helped. Thanks very much☺ Vanessa.

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    • Posted

      Hi Vaness(a?),

      Glad it helped in some way.

      The consultant is a specialist pulmonory specilalist who I saw when I was admitted to hospital. He arranged a CT Scan and in depth Spirometry tests (much more detailed than the ones you get at your local surgery) and he will see me next week to discuss the results.

      Meanwhile I have found the Pulmonory Rehab' group/programme most useful.  It is contracted out by the NHS to BOC (British oxygen Company).

      Your Father's Practice nurse should have details and I cannot reccomend it highly enough.  You can also get help and support from The British Lung Foundation (BLF).  They are basically a fund raising organisation for research into Lung conditions, but they run local support groups called "Breath Easy".  You can find them on the internet (just google BLF).

      The oxyiomter is very useful, and again your practice nurse should be able to instruct on usage.  It is very simple and gives an excellent indication of oxygen levels.  (EG a normal fit person register around 98%, 95% is the level you have to achieve to be able to fly.) anything below 90% is critical and needs attention.

      Your Father is very lucky he has someone like you look after him,  good luck.

      Michael

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    • Posted

      Hi Michael

      Thanks for the additional info. Plenty of things to explore there to make things more bearable. We've also been talking to our local hospital for a more immediate acute problem and they have been talking about finding his new base level, which I think is one of the crucial first steps for us. This is something that our local rehab group can help with.

      Good luck with your pulmonary appointment next week. Stay healthy! Vanessa.

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    • Posted

      I notice AGAIN you say your dad has a pulse oximeter but not sure how he uses it but you'll find out. And in the last post you said it had been awhile since you first posted...I'm the first 1 that answered you and you told me THEN that you were gonna check on the pulse ox. Yessss, I'm scolding you! I don't think you realize what a useful tool that is, how easy it is to read and use, and how it answers the oxygen question right away which helps rule out if it's a problem. Yes it is the clip that goes on his finger...the top number is the percentage of oxygen in his blood and the bottom number is his heart pulse rate. So...2 very important
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    • Posted

      Oops...sorry I hit the enter button

      Anyway, 2 very important numbers that need monitoring. Hey...I'm not your mama or your teacher or anyone important in your life, so you can do what you want but your dad probably may not be using his pulse ox and it can help you understand what's going on sometimes with him, even when he doesnt. I'm getting off my soapbox now. Good luck.

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    • Posted

      Ok ladyjack, I consider myself scolded! But seriously, thanks for reiterating that fact, I do get it now and will get onto it right away. I realise how important those 2 numbers are. V.
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