hi all, just found this forum. I was diagnosed two weeks ago. I was told you have COPD, use these inhalers and we will see ipyiu in three months and duly sent home with printed material to read. Freaked out the whole week, hardly slept and felt upset after I googled and read what COPD is and the affect it has. I feel I have been left to get on with it..Should I be seeing a specialist at the hospital and having chest X-rays? What's your experience been?
Thanks in advance,
This just happened to me too about 3 months ago amanda, except I didn't get any printed material. I think it's just the norm when you are mild to moderate they just give you inhalers. Mind I did have a chest x-ray as I have had breast cancer and was worried that my breathlessness was because it had spread to my lungs. Did you have a spirometer test at the GP's?
I am new to the whole copd diagnosis and community myself Amanda. I will be
thinking about you and pray for you. Hang in there.
Hi kayc123 ..yes I took a spiro test . It's such a serious illness and I was shocked that I have just been told in a casual fashion. I asked will it get worse and was told "everything gets worse" here's something to read. It's such a serious illness you would think a referral to a specialist was in order and also to a support group. i have a bad cough this week, bend down and pain rushes to head..think it's just a normal cough and sinus bug..but how can you tell when it is an unrelated cough? How was your chest x Ray..must have been such a worry.
Hi ,who diagnosed you im asuming from what you say it was your GP ,? How old are you ? ,
im aged 69 ,I was diagnosed back in 1992 ,with asthma ,some Bronchietis some emphasyma / copd ,I take 3 inhalers ( used to take 2 ) ,ventalin ,seratide and tiotropium ,I've had a few admisions to hospital over the years the last one was dec 2013 ,in 2008 I was admitted to ICU ,and when I was discharged I was told a team of copd nurses would take care of me at home .and they did and continue to do so ,I went to their first pulmary rehab in July 2009 .and I learned so much about the illness ,from exersise ,breathing technics,and education of the illness ,and medication and why I take it etc etc, from going to pulmary rehab ( at our local leasure centre ) I was asked if I would go into the gym ,at first under supervision ,andd from then on I continued to go twice a week along with other copd patients who have done the 8 week course at PR, ,,,yes I have had admisions into hospital over the years ,and too many chest infections for me to count ,,,,,but ,,,last week I was at the gym and I did 2 Klm on the tread mill in 24 minutes and 3 Klm on the bike in 10 minutes,so you see ,,,,just because you have been told you have COPD it's not the end of the world ,,,,,,take your medication ,if you smoke ,,,THEN STOP,,,,,,NOW ,,, and exersise ,,,even a walk is better than sitting on your backside like I used to do ( because I hot breathless) ,yes I still get breathless ,but when I'm well ,,,,I'm well ,and for my age I think I do ok ,
I told you my story to try to put your mind at rest somewhat ,,,,and I hope I have ,,,,ask your GP to refer you to Pulmary rehab ,they are a team of COPD specialist nurses and physio's ,they are brilliant ,will give you lots of imformation and health care, in my opinion ( better than a GP ) haha,
take care ,keep well ,and ask for the imformation you need ,and yes I would ask to be refered to a specialist ,
I'm also newly diagnosed Amanda with both persistent asthma and emphysema. ..fortunately both are mild. My lung function is 83% and I am now under the care of a pulmonolagist who changed my Advair to Symbicort Tubular which is helping a lot. I freaked to begin with but am a member now of a few fb groups where I have learned a lot. I had a pft test, chest xray and chest CT scan as well as nuclear stress test. My main symptom is shortness of breath and a tight chest causing a dry cough. The most important thing we can so for ourselves is eat healthy and exercise to work the lungs.
Oh....almost forgot. ..the best thing we can is not smoke! I stopped 15 years ago. Are you smoking ?
One thing I can't do is lie, wish I could at times, as some people can be
so judgmental. I am trying very, very hard to quit at the moment. I will
admit I have a couple of puffs a few times in a 24 hour period knowing
that right after that I will not be able to breathe. I got the nicotine patches and then discovered that because I have had two strokes
in the last few months it isn't safe for me to go that route. Many
questions etc. to ask the Dr. on Monday. Good for you that you
quit 15 years ago.
Hi Ada55.. Thank you too for your response and sharing your experience. I am learning the technical medical terms and it sounds as though you have had a thorough examination. I had whooping cough 3yrs ago, the following winter a chest infection and was given a general inhaler to calm the cough down, again last winter a cough and only last month tested for COPD after another chest infection. Since I found out, I feel more short of breath and a real heavy tightness in my chest though it's likely I am feeling worse as a result of my panicking. Feel quite fit generally. Not sure what my lung function is..I recall her saying something about 38% at the bottom of lung, 48% mid lung and 98% top of lung..my spiromtery test was in the 70s it's all a bit confusing for me. I am considering booking a private appointment with a pulmonologist, not sure how to go about it. I have an appointment with GP next week to request a referral to a specialist. I don't want to sit back and wait for the onset, I want to be well informed and have a plan to help keep it under control.
thanks terri69807 you too x
thanks Nanny1086.. Informative and helpful. I am 52 and quite young fir my years, generally quite fit. I stopped smoking over 7yrs ago ( never had a problem when I smoked)..The nurse at the go survey diagnosed me. i visited my GP last year with a chest infection and was told when you reach 6yrs no smoking your lungs are like a non smokers...how wrong was she!! sounds like you keep active Nanny1086 and an inspiration thanks.
Hi Amanda,
I think everyone handles it differently .. but if you're only borderline, there's no reason why .. with the right diet and exercise, and a positive attitude .. you shouldn't lead a perfectly normal and active life for many many years to come.
To be honest, when I was first diagnosed, I thought they were kidding .. I had no symptoms .. nothing, and I've only had one bad episode in all that time, and that was when I picked up a flu bug a few months back.
It has made me more careful though .. In the winter, for example, I try and avoid crowded shops and such like, for fear of picking up bugs, and I'm always always washing my hands. I also use First Defence at even the vaguest hint of a cold or a sore throat. I dunno if it works or not, but it's an extra weapon in me arsenal (along with blueberries haha)
When first diagnosed, I think most people tend to panic, and that can be a very lonely and frightening place to be .. so have you considered asking your GP to refer you to Open Minds? It specialises in counselling people who live with chronic illnesses, and I found them to be absolutely fantastic! Just to be able to TALK to someone who understood (and get angry with the world, and have a damn good cry too) .. was such a relief.
Most importantly, don't worry. You'll cope. And you'll always find lots of help and advice on this forum.
I don't know what I'd have done without it.
Good luck!
Jo
Hi jo..many thanks for your comments. Yes it has felt lonely, I've been hiding my feelings from my family and playing it all rather like having a common cold. Underneath, I have been worried and I know my eldest son is worried, as I can tell by his many visits and constant checking if everything is ok. Not mentioned it to my other son and daughters yet, as I said I am playing it rather cool and mentioning it in a natural conversation. Don't really understand it myself yet and having someone to talk to would be really helpful. Thanks for your encouraging words, x
I should add..my husband has been a good support, but clearly I was more stressed than I thought..(I have an extremely busy job role) and 3days following diagnosis, I broke down early one morning in a casual conversation with a colleague..he was so calm and understanding and his caring comments have got me through the last week. I am comforted to know this forum is here and you guys are there for support. Thank you everyone x
Stop the cigarettes now,not tommorow, your best bet is to go onto the electric cigarettes ,a lot of peaple are doing this ,and its working for them.if you keep on puffing on them real fags you will be in trouble,how do i know that,cause thats what i did,and now i cant turn the clock back,,,NO MORE PUFFIN. My wife smokes vype bold 16 mg nicotine cigarettes, and her dr is please with her. These are electronic cigs , i wish they were out when i tried to give up.
Stop the ciggaretes now ,not tommorow, look up vype electronic cigaretttes and use these ,my wife orders vype bold 16 mg ,and she smokes these ,she say they taste the same ,and it shows a vapour out of your mouth instead of smoke.her dr and consultant are verry pleased with her .
Hi David, I don't smoke, haven't done for years! Wish bye were out back when I was young though. However, I'm the generation that grew up ina smoking household in the days when cigs were advertised as cool, on trend and the general thing to do! Good luck with everything x
No ada I don't smoke haven't done for years!
My chest xray was fine (don't trust them though as they said my mammogram was fine after I presented with a lump,it was only after I went back 8 months later that they said it was stage 3, grade 3, invasive, but that's another story lol)). It was a shock as I had presented with shortness of breath climbing stairs etc & also when relaxing, no cough & as i have had sinus problems for over 30 years presumed it was just congestion.I was waking up at 4 am, tight chest & throat, feeling like no air was going in, consequently giving me an anxiety attack which resulted in me pacing round the house. My Fev was 78% and he said that is just at the top end of moderate moderate. I presumed I would be referred to a consultant however was told not severe enough for that! Gave me ventolin & said if I was having to use it every day to come back & he would give me a long lasting preventer. I went back after 2 weeks & was prescribed seebri breezhaler which is a capsule you put in a little canister & inhale once a day.During this time my anxiety attacks mostly stopped as I knew I could take my inhaler, still thought it could be my heart or something else though. Anyway, still using ventoiln every day so went back again 2 weeks later & was prescribed a green inhaler, serevent which I am to take 2 puffs x twice a day, alongside the seebri.On reading the contra-indications it said do not take with atenolol, which I take, after contacting the pharnacist & Gp they assured me I was safe to take it which I did &I didn't die lol. Still taking my ventolin most days because I feel like a veil is over my throat & no air can get in, however this is always at rest as I go on my exercise bike 20 mins, twice a day as they say apart from stopping smoking ( which I did 12 years ago) this is the best thing you can do to halt the progress of copd, & to be honest I'm best when I'm on the go. The times it gets me the most is dancing, I rarely go out but when I do I love a dance or 2, however since last october I can only do one dance ! Have to sit down and recover, maybe it's because I'm 59, you have to slow your dancing down? The other time is about 4 am, however I sleep with 4 pillows now & it has helped...but the good news is MOST times I don't panic now, I know it will pass I also joined the British lung foundation forum & discovered that copd affects different people in different ways, some people with a fev of 68% work full time & don't have to use inhalers, whilst otheres in the early stages, like us stuggle. Maybe when we get our heads round it we will cope easier, I hope so! I lost my Dad to COPD, however he had it for over 20 years & continued to smoke for most of these years, only when he went on home oxygen he had to stop .I've waffled on because you asked for peoples experience so I've told you mine . I think you are doing the right thing asking to see a consultant, however I know I don't stand a chance, it's like my GP was telling me I have a cold! I'm sure we will both live for another 20 years or more, once we get the right inhalers and mind set,
Take care,
x
My goodness Kay..thanks for your time on a Saturday evening. Feeling much more positive from our discussion. Just shared out conversation with my husband...I think his head is in the sand..we just had a little stroppy moment..but fine again! Cough, cough! I love the dancing good for you! I remember being out of breath many years ago dancing, so that's not a big change!..plan of action: draft a diet book for copd sufferers..you got any recipes or tips? Then get an excercise regime in place...how fab if we could win lottery and develop a health break for copd sufferers!?