16% Lung Compasity ( sorry spelling isn't great this morning)

Hello, I am new here and I am here because I just found out yesterday that my big sister has 16% of her lungs left. She laughs and tells me she will be okay, but math tells me other wise. If you start off with 100% and now only have 16% that isn't good right? I don't even know what to think or how to help or what to say. I feel so bad and I'm gonna lose my sister.

12 Replies

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  • Don't feel too despondent. I have a FEV1 of 15%. They are just numbers. I think your sister has the right attitude. We all get scared but you can't live your life that way. I do as much as I can. I live alone so can do basic stuff like showering ,meals.

    Just go on supporting your sister.

  • You are not losing your sister yet and hopefully not for a long time to come. Be as supportive as you can kayonaluna and be strong. Xxxx

  • You're upset and worried about your sister but it sounds as though she's managing really well. The 16% is a measurement. There are lots of people here who've made improvements in their FEV1.2Malinka copes brilliantly!

    Talk to your sister and find out how she manages. The better you understand it the less frightened you'll be. Ask how you can help and tell her you don't know what to say. Sometimes the worst thing can be the people who don't say anything - you wonder if they've even noticed that something might be not quite right. But at other times you might wish they'd stop talking about it. Take your lead from her, and make sure she knows you're there for her.

    And there's always someone here to talk to.

    Sue x

  • I'm sorry about ur sister from ur word math I take it u r in the usa

    I can't advice u cos ive got asthma

    but if u lock ur posts u will get more answers people on this site lock their posts cos the whole internet could read our private thoughts/somebody will help u soon best wishes

  • HI relvar if you dont mind me asking eh,, as you had copd when you joined us 9 months ago, so now its asthma hen , was you wrongly dx as having copd back then, , as a few get wrongly dx and later found to be an in correct dx ,,

  • yes long story it still don't make sense.

    I came out of hospitalseplast year I was as normal for about10days then noticed I was over breathing which was always happened right from nervous breakdown in 84 I put it down to anxiety but iwasnt anxious about anything and I'm hypocondriact anyway.it went away after about a week started overbreathing again this time was a bit frit a voice was telling me it wasn't anxiety I mentioned it to my mam she said nerves go and take ur mind off of it got used to overbreathing .I was watching EastEnders when pains across chest tight feelingetc

    all through November was gooling asthma thought I am not chesty no cough then remembered friend who had died of emphysema. undiagnosed pain in back appeared where the left lung is. got really frit no longer had diazepam to calm me down

    thougth id got lung cancer looked symtoms up frit meself started getting really breathless and hypoventilating. ect finally I rang my cpn who I had been avoiding asked her opinion she said u know ur own body.went drs I fell over his desk it was a locum I asked for diazepam still thinking it was nerves cos I have got that worked up in past I was waiting in the chemist when I got told go back the dr wants u.he said ur psychtrist says no valiumyou cant have them ishouted at him to f off.my cpn phoned the drs and got me some sleeping pills.noticed they slowed me breathing down and pains across chest too.i was lying in bed one night it happened again so went casualty dr examined me gave me amoxillion said chest infection.it went away. then came back. drs again said chest was clear. but she sent me hospital to rule out bloodclot on lung. it went for 10 days, came back 27th dec I drank my posh champayne to relax muscles knew something seriously wrong by now,i will write part two in a bit moral of story though to anybody don't be fobbed off.

  • I'm actually in Canada, my sister can't seem to wak from the living room to the kitchen without losing her breath. She said her doctor is going to send her for some exercise thing. To get her to manage her breathing. I just know all the personal things she has been through in her life, and now this. It just kind of sucks. I am in the health care field and would never say to anyone "no one lives forever " because in our hearts and minds we want them to right! I realize they don't but hearing it really isn't a nice feeling that is for sure. Thank you for all your stories and support, I am starting to think that most doctors get their licence from a cereal box. Or they just pick from a hat what might be wrong. I wish you all the best! Thanks again

  • that took ages to write,

  • HI relvar yes i can see how long it would have taken you, its took me a fair bit of time to read it, so have you been actually dx with copd or asthma, after all that faffing about the dcs have put you through, i me personally would have been insulted as you said you had a breakdown , that in its self is enough to tip one over less you got the grip of it, as a hypochondriac as you was told its not on really, so do you or are you any nearer to knowing what you have wrong with any sound dx of either copd or asthma, im of to take 2 paras has have a headache its just come on ok relvar ,,

  • I saw agp who has known me over 20yrs one day after Ventolin had no effect it was changed to actrovent which did improve my breathlessness by about 50 per cent told by a locum I had copd I crapped myself.i was still really breathless finally prescribed Valium to calm me down and he prescribed seretide but warned me it would take 2 days to work properly it didn't work over the weekend so I went back drs seen same gp he examed my chest again I had caught a chest infection given amoxillion it worked I cant describe how it felt to be normal again finally.

    he referred me to see a consultant cos I was convinced I had early empsyma I was given another chest xray they took a bloodtest I done the exercise on the bike test I had got my gp to ask for cat scan because I read on this site that is the only exam that shows emphysema done spirometry test which shown I did not have copd had a test where u breathe in the irritants I reacted to two of them eventually called back by consultant told cat scan shown bi lateral emphysema which ive since been told it wont devolp into proper emphysema she said results of blood test shown up an abnormal which would confirm to her asthma also the irritants she has diagnosed me with asthma 250 seretide twice a day and actrovent as a reliever ishould add I was sectioned for anxiety when I was discharged in September of last yr that's the gist of it I could go on but there are many people on this site worse of than me so I thank my gp for listening to me

  • hi yes just got the reply up,, says no copd but bi lat emp but lucky s it wont go to full emp over time and asthma was the dx , ive never had no bike test though, also was sectioned is that under the mental health act or you yourself agreed to it, i read the reply of you in detail and ive known many who was dx with asthma and later went on to progress to copd, later on so ur not out of the clear yet , you seem to have a good con so me id watch meself carefully any change of syptoms like chronic i would see your doctor, as asthma can and does cross with asthma with some of us . i no a lady who was dx with copd later turned out to be poorly controlled asthma, then had to go in hospital with something, her right lung was removed with lung cancer, now as her left lung which she now as severe copd, and oxygen dependant .

  • if I left anything out tell me what u need to know iam having some coffee and zoplicone

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