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COPD, Emphysema diagnosis

Posted , 8 users are following.

hanb
hanb

My mother has just had a diagnosis of COPD/Emphysema, but denies there is anything wrong because she believes she has no symptoms (besides the audible 'smokers' cough!).

She had a CT scan yesterday, and the results were not due for 10 days. However, her GP arrived today to break the news. The hospital want to admit her for biopsy and treatment - she refuses to go.

Is there anything that can be done to persuade her? Rather than 'allowing' my father to nurse her to her death at home? She has not been given a 'life-span' if not treated.

Any help/advice gratefully received.

Huge thanks in advance, for reading.

0 likes, 13 replies

13 Replies

  • chris_01986
    chris_01986

    Posted

    Hi Hanb

    I cared for my wife who had c.o.p.d /emphazema for app 6 years till she finally died of lung cancer

    it wasn't pleasant as about a year before I was diagnosed myself with c.o.p.d and struggled to care at the end up that was five years ago I am now 71 and we were heavy smokers all our lives and only gave up 5 years ago ..with my wifes illness the only effects copd had on her was her stressed breathing and catching numerous lung infections ... I had the breathing problems but numerous other things going wrong with me which my wife never suffered .. ie dizzy spells ,, tinnitus . blurred vision .. cold arm .. blackouts and burning tongue .. I was treated all this time with numerous inhalers and steroids .... I went to Greece last year collapsed and landed up in intensive care having blood transfusions 5 in all ... the greeks had diagnosed me as having pernicious anemia and not c.o.pd. and had been diagnosed badly in uk bordering on

    neclect .... I am now back home and I feel like a new man I can run about with my two yorkies and do things that were impossible last year my girls are amazed at my turnaround as they were about to buy me a mobility scooter ... definitely not needed now as is walking stick what I am trying to say to say is please make sure your dear mum has been properly diagnosed .. the lung specialist in Greece explained to me my lung function was mild for a man of my age who had smoked so long 50yrs or so and that c.opd was lack of lung oxygen whereas pernicious anemia was lack of blood oxygen so just make sure your mother doesn't go down the road I had to go any info you need please get in touch ....

  • hanb
    hanb

    Posted

    Hi Chris, thank you so much for your reply, it is much appreciated.

    A question - how did the Greek hospital diagnose you? Mother is very reluctant to seek any further testing, support or help from 'orthodox' sources, but we have found a local Homeopathist who does home appointments, and she is on a Church Healing list, and a remote healing Reiki list (these are things she believes in).

    They have diagnosed her through a CT scan only, no spirology.

    There is a lot more to her history, 'mentally', which I think is adding to her lack of belief in orthodox medicine (I already feel I am 'breaking her confidence' with this discussion!), but I feel I need help, support and advice!

    Thank you, again. And I'm so pleased you got the right diagnosis, and are doing so well.

    Kind regards

  • chris_01986
    chris_01986

    Posted

    Hi Hanb

    mine is a long story so will try and condense it ,, on my arrival in Greece my breathing became

    very poor .. and I started to take a course of steroids and ante biotics given .. by my gp in uk .. I landed up collapsing and landing up in intensive care in a semi lucid state .. with nothing to go on other than my friend telling them I suffered from c.o.p.d they got to work .... when I finally came round they had put 5 units of blood into me .. an English consultant came to see and quiz me .. they had came up with the startling information that I had very serious pernicious anemia not c.o.p.d .. the only resemblance being shortness of breath he could not believe I had been so wrongly diagnosed .. only I had a prescription for my medication from uk and had all my inhalers did he believe me .... they said ive had a slow blood loss for about 4yrs which led to anemia creeping in mimicking c.o.p.d. ie terrible shortness of breath but also had a lot of other conditions that were being were passed of as c.o.pd .. I was never ever givin a scan to determine what was wrong with me as was explained to me that is unnessary to establish c.o.p.d as a blood test and a lung function test is all that is required ... when I was given copd as now cal it I was told by a young practice blow on this tube and then oh you have c.op.d ... it was not till in Greece where I had a proper computerised lung function test done did I learn my oxygen levels for a man my age and just about chain smoked were remarkable ... why my blood oxygen was low is because I suffer from b12 deficiency ,,, plus in Greece you get all your files printed out for you they are not like here all computerised so you can read all your files .. so all I want is for you to make sure your mother has been properly diagnosed I had an ex ray of my lungs done in the early days and they showed I had a large build up of tar residue in my lungs .. I was given stuff in Greece from the hospital Trebone N to take its powder made up in water and just tastes like lemsip and it clears all the mucus away you cant get it in this country but it works a bundle ... ps I don't think for one minute you are breaking your mothers confidence you are a loving caring daughter my daughters went to all lengths for me ... your mum may well have c.o.p.d .. I am only telling you my experience if you had seen me four years ago and seen me now you wouldn't know I was the same ..person ... I f you want good information go to the N.H.S site on the web and you will get good information there and also remember c.o.p.d is an umbrella name given to lung problems as is dermatitis given to all skin complaints I hope this is of help to you but remember it is my own personal experience .. so proper diagnosis is essential if I had had I would not have been through years of hell ..... best of luck hanb

    • Jan89717
      Jan89717 chris_01986

      Posted

      Hello Chris. I've just read of your experiences (almost by default, looking up something else). Just joined this forum, and reading your post wondered about myself. It 'seems' I too suffer with COPD.....and as you say an umbrella for many other causes. My history briefly: been a smoker for x years, moderate drinker. Very strong and healthy up until approx 18 months ago. Sudden breathlesness, awful fatigue, loss of appetite, enthusiasm, energy to even do the stuff I wanted to do..... sleeping like a log at any given point throughout the day... Prescribed steroids,antibiotics,(for respiratory infection) Chest Xray/clear. Blood test...Liver, kidneys fine. In the meantime had breathing tests, was put on 'Warfarin' and 'Digoxin' to reduce heart rate (very fast pulse). This has resulted in a very slight improvement, but frankly s.d all, otherwise.  Just have this feeling there is more, and intend to ask for a blood test for PA as all along I've felt, shall I say 'aneamic' .....just an instinct.

      As you say, a bad trip. So glad you came out of it. Just wanted to thank you very much for your honesty and congratulations on a recovery. Those Greek doctors truly are Gods!  Take care.

  • chris_01986
    chris_01986

    Posted

    ps hanb

    meant to say there is no biopsy test for c.op.d as I mentioned c.o.p.d is only an umberella name

  • hanb
    hanb

    Posted

    Thank you Chris, much appreciated!

    My mother has not been offered any form of lung function tests (I know a little about these due to a close friend suffering Sarcoidosis), nor blood tests - this diagnosis has come solely through a CT scan.

    I'll do my research and read up on NHS information.

    The scan only came about because of prolonged swelling and pain in 1 knee, an x-ray was inconclusive, so they scanned.

    They wanted an 'acute hospital admittance' to do a biopsy (scan also shows a 6cm growth/mass in her lung), and further tests, but she doesn't believe the results because she "is not wheezing".

    An aside, she has suffered 'mental health' problems, and been 'sectioned' twice, which I think, in turn, has made her wary of 'medical intervention', and concerns over 'lack of control' over any treatment she is offered.

    Thank you, again.

    With kind regards hanb

  • Jubal_Foster
    Jubal_Foster

    Posted

    You said a 6 cm spot. They said I had a 5 mm nodule about 2 months ago. I go for my follow up CT scan today. They say 2 mm is normal. Mine might have been swollen due to pneumonia I had and the COPD. Hoping it was selling will know next week.
  • hanb
    hanb

    Posted

    Hi Jubal,

    Thanks for your input - please keep me updated on your results.

    Kind regards, and best wishes,

    Hanb

  • Jubal_Foster
    Jubal_Foster

    Posted

    I think I would try hemp seed oil,3 drops or so in your drink a few times a day. Or Hemp protein mixed with water. Have read it shrinks tumors and some cases gets rid of it. Also asparagus, pureed(sp)..... 2 table spoons twice a day mixed with drink of choice. It is supposed to help. Good luck.
  • poppysocks1
    poppysocks1

    Posted

    I believe I have written somewhere on here before about waiting for scan results from thorax to pelvis...Yesterday I was told by the chest clinic consultant that I had severe C O P D (emphysema kind) he showed me my scan and explained my condition...

    My lungs had large black holes in them with only FEV37% of my lungs working...(around 1/3 of the lungs in working order !! )....I was so scared...he sent me down to have an X-Ray,and bloods taken,saying he will contact me again within two weeks,for results...my gases were 98%..also said he would be writing to my doctor...

    I have not had chest infections or wheezing..but my chest is sore,and I have pains radiating from front of chest to the back between my shoulder blades,and spine...I have Clubbing of my finger nails...

    I am breathless on any kind of exercise,even walking upstairs,I use a stick,if I go out,( I don't very often go out anyway)

    I also have Fibromyalgia,and Osteoarthritis in most joints,and my muscles in my legs and arms are quite weak...

    I am 68 years old,and I have smoked for the past 53 years...I have made an appointment at my doctors so as I can begin to stop smoking...

    I thought I had cancer,whilst waiting these results...I'm pleased I haven't,but I was terrified I had...

    The shock of seeing my lungs so black though,shocked me to pieces...

    I do hope I have been diagnosed properly...

    Will wait and see what the X -Ray says,and what the blood results show up if anything more...

    Take care everyone...

    • butterfly2
      butterfly2 poppysocks1

      Posted

      Hello smile  my moms in the exact same situation as you are and I'm terrified I'm going to lose her ..  I just wanted To Say Hi  to see how your doing .. hope all is well 
    • poppysocks1
      poppysocks1 butterfly2

      Posted

      Hi butterfly2,hope your mum has a good day today,cause that's what its like for me,goodish days and bad days.

      Thanks for asking smile

      Take one day at a time,it is the only way I find to be able to cope with the conditions I have,as written above in my first post,

      My husband and son feel the same way as you do about your mum,I can only feel for them and yourself,being in the positions we are all in at this time.

      Just keep loving and caring for her,it will show her what a loving daughter/son she bought into this world.

      She will feel so proud of you,and she will know you will see this illness through together,as she saw you through your life,as best she could when you were growing up.

      I feel scared too,and so will your mum feel the same,though she might not voice it,so as to help you through all this.

      Thinking of you,sending you vibes for strength,and courage to face this together,as I am with my family.

      One day at a time. (((hugs)) to you both.

      Keep in touch.x

  • hanb
    hanb

    Posted

    It is with great regret that I have come back to inform you that my Mother died less than 7 weeks after her initial diagnosis.

    I'll hang around in case I can help or support anyone else, and shall leave this thread in place for others to access the information all of you have provided.

    Huge thanks to you all, kind regards and *hugs* to you all

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