Having a tight chest and pain in back. Respiritory nurse call back as not sure if I have chest infection...Got on to talking about progressing breathlessness, she said I could stay the way I am for 3 more years...told her thanks. Now worrying I only have 3 years before it all progresses and I am gasping for breath so wish she had not said that
Just great : Having a tight chest and pain in... - COPD Friends
Just great
67 Replies
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Sorry to hear you are not well again my lung doctor told me to go and enjoy my life he thinks I am worrying myself sick about it
in reply to Shortlungs
And he is right as we don't know how we will progress ..annoyed nurse put a duration on me as I now am worried 3 years and I won't be able to control my breathing.
I actually pointed out that some woman on Facebook mom isn't breath less and has had this condition for 30 years and isn't breath less..I wish I could find others who have had it for years and are not excessively breathless
Perrythomas in reply to
Emily I was diagnosed 15 years ago and still not breathless. I try to keep as active as possible and try and eat well. Biggest problem is phlegm but so get rid of as much as I can every morning. I make myself cough to get rid of it. Just keep an eye on exacerbations. I was told I was having an exacerbation when in fact it was pneumonia! And treated by the same old stuff that didn’t work. Research for yourself and find out as much as you can. New drugs are being developed and make sure you get reviewed! I was told you can live a long lifespan with COPD so keep healthy! 💕
in reply to Perrythomas
I do get breathless at times nothing major have you got emphysema and asthma?
in reply to Perrythomas
You were misdiagnosed? My god
Perrythomas in reply to
That’s why I say you know how YOU feel- the professionals don’t - go with your feeling👍 No asthma and no breathlessness so I keep going! Good luck 💕
in reply to Perrythomas
That is amazing you have no breathlessness, I as I said do, nothing major but I do...how are your sats..mine drop when I walk down to 90 then come back up...somewhat light headed I was today
Perrythomas in reply to
My blood oxy levels are normal- my main problem is phlegm- always a battle x
in reply to Perrythomas
Mine drop to 90 when walking just checked
in reply to Shortlungs
How are you anyway
Shortlungs in reply to
Lung doctor seems to think my coughing is affecting my vocal chords so now referred to speech therapist he doesn’t think it is my emphysema as only have it in top of lungs
in reply to Shortlungs
Oh no..
Shortlungs in reply to
don’t know who to believe still waiting on heart scan
in reply to Shortlungs
Not had that fine yet? How is your breathing, nurse keeps asking me if I have cough but no I don't.
Shortlungs in reply to
I feel like i am suffocating but lung doctor says he doesnt think it is my lungs as only have emphysema on the top off my lungs and i should go and enjoy my life
in reply to Shortlungs
What do you mean
Shortlungs in reply to
Just can’t catch my breath
in reply to Shortlungs
No what about inhalers
Shortlungs in reply to
Got inhalers they dont seem to help
in reply to Shortlungs
Well what are they going to do....
in reply to
How is rehab going..I have restarted but it's a bigger group and everyone seems worse than my group before no one seemed able to catch their breath which has scared me to death.
So you are mild fev1 is whst and what is your DLCO is thst causing it.
Not thst I know what I am talking about
in reply to Shortlungs
How long have you been like this..I went for a few days breathing well so was in denial of this disease
Shortlungs in reply to
That’s me just back in I am at rehab again like you I am the best there
in reply to Shortlungs
Do you talk to anyone...the plus one lady has had emphysima for 30 years but very breathless no oxygen. Don't know about the others. Nurse said I might not be like that thought oh please
Shortlungs in reply to
The lung doctor thinks I am panicking and looked at my scan and said I haven’t progressed since 2017 and I shouldn’t be getting symptoms
in reply to Shortlungs
Do you talk to your group
Shortlungs in reply to
Yes they are lovely there is 4 on oxygen and another 4 but it takes them to walk across the room most off them only have 27 per cent lung function left
in reply to Shortlungs
Oh they told you
in reply to Shortlungs
Not sure I am going back
Shortlungs in reply to
I don’t think it is helping me but just staying in the system so they can’t say I haven’t tried
in reply to Shortlungs
How long you been doing it...it's my second time it does help with breathing
Shortlungs in reply to
It’s my second time in 3 years the last time the respitory nurse wrote to my gp saying she thought it could be something else at that time I had a 10per cent collapsed lung only got found out after rehab a couple of weeks later
in reply to Shortlungs
Remember you saying. Mild is good
in reply to Shortlungs
Do you think you are panicking
Shortlungs in reply to
No I don’t that’s how I won’t be fobbed of
in reply to Shortlungs
I ask because I think we know when we panic..I called nurse yesterday vise like pressure across lungs and back...She asked if I was stressed
Shortlungs in reply to
Been through that for 3 years now asking if I was worried but I know the only thing I am worried about is my breathing I get pain like spasms in my right side under my breastbone I have had them on and off since my radiotherapy for breast cancer
in reply to Shortlungs
Oh so so sorry
Shortlungs in reply to
Got over that just trying to accept breathing problems and what I can do about it I am trying to get on with my life how are you managing
in reply to Shortlungs
Well had some really breath easy days. Last few days chest and back tight hence nurse call out. Lungs feel too big for my ribs
Shortlungs in reply to
Know the feeling don’t know if this is how emphysema feels like but I feel like that most of the time trying to get used to it don’t know what else to do all I see at rehab is people trying to purse lip breathe
in reply to Shortlungs
It is the purse breathing don't mind that to much. It's watching people try ing to breath before we even start excercise..group before wasn't doing that
in reply to Shortlungs
Still struggling with diagnosis and prognosis. Also struggling with some of things that's said to me.
Feel a bit better knowing people have lived with this for over 30 years.
Not every one with emphysima is on oxygen. Rate of breathlessness varies??
This is not a death sentence.
Some of what nurses say about how the disease affects individuals I think make some sense. Hate the progressive bit but we don't all follow same spread or course and that until nurse comment has given me some comfort
Shortlungs in reply to
I have never accepted it as mine came on too quick thought I took the flu as husband had went and had a bath took my dog out and couldn’t get across the road as couldn’t breathe
in reply to Shortlungs
I remember you saying
Shortlungs in reply to
Never been that bad again can do 30 mins on treadmill
in reply to Shortlungs
Hope that isn't how it works
Shortlungs in reply to
I don’t know how it works a woman I know has had it for 20years she is ok all she can’t do is walk up hills and she still smokes
in reply to Shortlungs
Has she got emphysema? And another lady allegedly has it 27 so years still smokes and her daughter said she doesn't excercise still smokes and doesn't get breathless. She isn't on oxygen although they thought she would be
Shortlungs in reply to
Same as the woman I know yes she has emphysema thats how I think there is something else wrong even my lung doctor doesn’t know what to do for me just wish this heart scan would hurry up
in reply to Shortlungs
Yes every one at rehab this time gasping for air...the lady I am talking about ...doing her walks but I don't advocate smoking...I sometimes wonder if it's my asthma giving me problems
Shortlungs in reply to
You never know have they ever sent you for a scan I would be pushing for one or see a specialist
in reply to Shortlungs
Consultant won't give me one...said single breath diffusion which checks for emphysima really don't know
Shortlungs in reply to
I would be pushing for one
TN57 in reply to
I have to have a CT scan of my lungs the week before I see my doctor every 6 months
in reply to TN57
I have never had one...why every 6 months...that doesn't happen in England
in reply to TN57
And what lung condition have you got
TN57 in reply to
I have been diagnosed with COPD in 2017 rifht now it is every 6 months but will go to 1 a year in Feb. I am in the US and all the Pulmonogist do a CT of the lungs once a year to get up with the progression of it. At least in Tennessee where I live
Perrythomas in reply to
Don’t be put off - if you feel you need a scan get one! I was refused X-rays and It turned out I had pneumonia
My Droctor told me my CT of my lungs haven changed since 2017 and beleives my anixty is making my breathing harder because I tend to hold my breath a lot when my anixty kicks in
Having same issues. After 8 years of back and forth with doctors I finally had one refer me for echocardiogram and stress test. Stress test abnormal and stopped due to short breath and high BP.
Referred to Hospital Cath Lab. Right and Left Heart Cath. Confirmed Diastolic Dysfunction. No blockages requiring stents. Doctor stated can use meds to control and will take care of SOB.
Meet with my Cardiologist in two weeks to see what is next. Don’t know if this will help you but rescue inhalers had no effect on me and spirometry 4 tests over 8 years showed some decrease but not enough to see a pulmonologist. Then scripts for anti anexity meds (never filled), then 2 years of seeing an ENT doctor for allergies and untold amounts of different meds (that wasn’t) helping, sent to a shrink (she said nothing wrong after 3 visits), and finally one doctor listened, got the stress test and referred for heart cath’s and hopefully will have a path to getting proper meds to control my he shortness of breath. Gosh I sure hope so. Too many years of feeling like crap.
Sorry for the late my post
Thank you for your reply was given Valium a couple of weeks ago but refuse to take them still waiting on echo
Sure hope get the answer, took too long for me. Praying for good results for you
I have overlap but still want to know what copd emphysema as it's important i know how long people have had it can we survive it...what people feel when consultant say you won't progress
Yes RedSox you are quite correct. Without a high resolution ct scan they cannot tell you what you have. I was diagnosed with copd back in January. Too broad an umbrella term. Now just found out I have emphysema in both lungs and bronchiescetis too. God knows how many x Ray's I've had and told all not too bad. Now well that's another story altogether. Gone downhill fast due to all the infections. I'd tell anyone to push for a scan. Only way to get proper result.
in reply to
When did you find out
in reply to
Found out 3 weeks or so ago. Pushed and pushed to get ct scan. Totally different treatment plan now. Had oft test today. Didn't get results tried hard to get them but will be through sometime next week. What a waste of 8 months of infections that could have been dealt with earlier before l7sing any more lung function and lung scarring . Everyone's right on here must get a ct scan. GPs don't know the half of it. Hope your well Emily. You seemed to go off the radar for a while. X take care Maz
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