Emphysema

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Hi all looking for a bit of advice last year I was diognosed with mild background copd straight away I stopped smoking I have just recently had a infection have not been coughing anything up or had a cough j just had a few pains in my back just had blood and chest xray results back all bloods clear doc say xray shows emphisima I don't need any treatment has anyone else had this told to them after stopping smoking my spirometrey result last year was 79% don't need to use inhailer ect would be Greatful for any replies on this as I am thinking of asking for a second opinion

Many thanks x

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12 Replies

  • Posted

    Welcome Zoozoo!

    You should definitely get a second opinion!  If you were diagnosed with emphysema, you should be on SOME type of medication.  Emphysema falls under the "blanket" of COPD, which is a progressive disease; HOWEVER, it can be controlled/slowed down,  if treated properly.  None of us on this forum are doctors, we are here to support one another; therefore you REALLY should get a second opinion.  Example:  7 years ago, I was WRONGLY diagnosed with asthma and not given any treatment.  When my conditioned worsened 4 years later, I was PROPERLY diagnosed with emphysema with a different doctor.  IF I had been properly diagnosed at first, I would have been receiving proper treatment.  However, since I basically LOST 4 years by not receiving treatment, I was diagnosed at Stage 2 emphysema when the proper diagnosis was made.

    Again, Zoozoo.....please get a second opinion!  Let us know!

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    • Posted

      Hi sandy

      Thank you for your reply sorry to hear about your diognoises could you please tell me what is the proper procedure is for diognosing emphysema, (ie) is there a test that can comfirm this or a clinic or blood test as I haven't been told anything only what showed on my chest xray I am going back to my doctor next week and want to be able to ask him to sent me for the relevant test

      Thank you

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  • Posted

    Hi I to was diagnosed with emphysema after getting an xray so I stopped smoking right away.I am 53 and was told I had the lungs of someone age 67 I do get very breathless but do not get any medication for it .
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    • Posted

      Hi Linda and zoozoo,

      You really must get second opinions,you can get help for your breathlessness at the very least.  I am 70 and was told I have the lungs of a 103 year old! which beggars the question "How many 103 year olds alive have been tested"?  It's a bit of a battle ground really.  I have cut my smoking by half but because I have lost 2 stone in weight over the last six months and after an epsidode a few weeks ago I am still trying to recover.  I am now registered with the Rocket team at our local hospital and had my first visit yesterday.  The nurse was wonderful and I now feel safer as I can contact them at any time.  Anyone on here should try and register with them through their doctor, they are a Godsend.

      Love and best wishes to all of you.  xxx

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    • Posted

      Hi I was at doc today just been feeling so down however she did sound all around my back lungs ect and gave me a course of antibiotics and cocodamol still not feeling good she says the test thing you get dont know what its called you blow into it she says it was normal but I remember that day doing that I thought I was going to faint as the nurse kept saying keep blowing and proceeded to say there you done it but I can tell you u have the lungs of a 67 yr old so how can things be normal.I just give up at times and suffer in silence take care all
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    • Posted

      Bless you Linda, I know how you feel, you have to jump through hoops just when you have no energy to fight.  If you could ask for your doctor to ring you and refer you to your local hospital "Rocket" team if they have one as I did, I can tell you they are wonderful and they come to your home.  They are accessable by phone at any time so it's a great comfort and takes a lot of stress off the copd thing.  I had my first visit last Tuesday and the scrummy male nurse was wonderful.  He is coming again next Monday, I'm not sure why but I'm so glad he is as I haven't been out for weeks and I've lost a lot of weight as I haven't been eating. P lease don't give up My Love, it's a question of being pushy, or get someone else to do it for you, getting past some of the receptionists is bad enough but it will be worth it.  Don't forget, you are NOT alone, I for one am here for you anytime for what it's worth, it's all very scary.  Big hugs and love Linda. xxx
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    • Posted

      Thanks very much for your kind words I do get home therapy but that's more to help me cope with the sudden death of my son .As if how can I ever be able to do that
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    • Posted

      Oh Linda!  I am so deeply sorry, there are no words to comfort you over the death of your son so I won't even try.  My daughter is a Police Dog Handler and the worry over what could happen to her and our beloved dog is enough to cope with, I can't begin to imagine what you're going through.  Apparently it does get better but that's no comfort to you now.  I do so wish I could help, all I can do is send my love and hope you will keep in touch.  God Bless Linda xxxxxxxxxxx
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  • Posted

    Your blood results and xray can be clear but just because they are doesn't mean you don't have emphysema.  It just means you don't have an infection any longer.

    Were you told you had a lung inection?  What medication were you offered to treat that?  ABs ? Steroids?

    Are you breathing ok, exercising ok, walking etc. 

    Have you decided you don't need to use the inhaler or did your doctor tell you don't need to?

    If you are having difficulty breathing, walking exercising, you need to go back and discuss this with your doctor.

    Mild copd doesn't necessarily mean you have emphysema, but if you wish to learn about copd check out the links below:

    https://patient.info/health/chronic-obstructive-pulmonary-disease-leaflet#nav-4

    Breathing difficulty, deterioration in quality of life, inhaler medicines can most certainly improve on that.

    However breathing difficulty doesn't automatically mean you have lung related illness, it could be something else.

    If you are not confident with your own doctor do get a 2nd opinion, either another doctor in the practise or if you are unhappy with your GP surgery generally then you do have the option to change practises.

    Good luck and breath easy.

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    • Posted

      Were you told you had a lung inection?   should read:

      Were you told you had a lung infection? 

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  • Posted

    Hang in there, Zoozoo. For something so serious I'd get a 2d opinion. If 2d disagrees with 1st and 2d can't defend their position and refute 1set's, I'd get a 3d. Any safe med, treatment, exercise that helps us keep breathing is good, and a helpful doctor nurse or program is good too.

    (And again I'm jealous of the UK system: rocket teams! What a great concept, and one which could save so much money here.)

    Be good to yourself, Zoozoo especially in terms of taking care of your health.

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