Greetings, can't wait for this cold bite to end to see if this makes any improvement, this year much like the last few has been a bit of a struggle with breathing and mobility, aches, pains and all, though the snow is pretty.
Just an update I had spirometry (a month ago now) and revesability tests a couple of weeks ago. The Nurse has told me that the 1st Spiromentry implies restrictive, while the revesabiltiy implies obstructive, but both imply I have copd-emphysema, as I had previous been told, but when asked if that is the final diagnosis, she told me that they werent able to give a full diagnoisis, though I had been told Spirometry would be able to do this. I have asked Doctors for a follow up scan CATT or MRI, but the GP wasn't the most helpful, and did nothing that the Nurse asked me to ask her to do, instead the GP wanted me to do a spit test for copd, but as far as I'm aware from others with the condition, COPD can't be tested with a spit test? My accompanyment told that this GO seemed more concerned with mental health then investigating physical symptoms & treatment.
This has left me in limbo & very disapointed once again, as I don't seem to understand why they can communicate this information to eachother rather than getting me to to the inbetween work while Im not feeling great at all. My accompanyment also tried to explain to the GP but she seemed more concerned with moving me on then addressing my concerns. Once again telling me COPD is a terminal illness, and due to the additional of mental health stress my life expectancy probably wouldnt be long, in in my early 40's. Not really very reasuring for my mental health and not very helpful with the condition or releiving symptoms I experience. I'm not really sure what to do next. Any suggestions are welcome.
Friends have told me to keep pushing on, but at the moment I feel too tired, fatigued, since both Spirometry tests I've had an increase in debilitating burning backpains affecting my movement and legs, which isnt making getting around very easy at the moment. Over the years it's been a tug'o'war with my gp surgery. It seems that advising patients to downloaded health apps and gluing faces to devices are the new solutions from some health service professionals nowadays. These things may suit some people, but I don't feel they are a correct way of dealing with my health.
I've also now asked many times about rehabilitation but havent had any response about this, yet.
Hi Sea. I’ll try to come back with some kind of constructive comments but at the moment I’m a bit gobsmacked! Your surgery are giving a very good impression of not knowing what they are doing!
Is there another GP surgery near you that you could transfer to?
Do you have access to your records on line? If you do, take a peak. You might be able to see your results or at least the GP and nurse’s opinions.
So sorry to hear about your ‘treatment’ by GP. Unfortunately it’s becoming more common, apparently due to a shortage of GP’s and increase in people getting sick. Can’t comment on that. As far as I am aware, and I certainly have never been asked for a spit sample since being diagnosed with COPD seven years ago, that spit sample is relevant to infection, but sure others have more information about that.
I have also found recent attempts to speak with GP incredibly frustrating. Had 2 recent X-rays following chest infection and was sent a text that 2nd one was normal. I spent almost an hour trying to get through to the surgery to ask what’normal’ meant? Does that mean that previous CT scans that showed lower lung was damaged and resulted in diagnosis of emphysema has cleared up? Received email to say X-ray was normal.. enough to make anyone stressed/depressed and fatigued. I hope you manage to get a proper answer, and find the strength to do so. Take care 😊
So you're going to die in your 40ies. What a load of old codswallop. Don't believe a word of it. But it's really not very helpful to tell you such a negative (and inaccurate) thing. Try not to let them get you down. The only helpful thing I can suggest is that you contact the nurses on this site who are much more knowledgeable than your GP. Good luck.
Hello 👋. What an appalling response from your gp! COPD in itself is not a terminal disease, progressive, yes. BUT there are many avenues to explore which will work for you. Trying to take all your questions in, but brain scrambled at present as yours must be! 🤪
You are young enough to fight this with the right advice and live a good life.
Hoping other lung buddies can contribute and allay some of your fears.
A "spit test"?!? They are having a laugh. A sputum sample which is presumably what they mean, is taken and analysed when you have an infection to show what bugs to treat for. Maybe there can be some other purpose to doing sputum samples but certainly not to diagnose copd.
Given you are young for copd, ask for a blood test to rule out A1A copd. This is when you are deficient in an enzyme and I think it's genetic. It can sometimes explain why younger people have copd. Many people live successfully alongside A1A - just something to check.
People with copd usually die for other reasonse, often old age. In any case progression can be slowed down with exercise and a good diet. Alberta's suggestion to telephone the forum's nurses to talk things through is an excellent one. Good luck!
In December one gp told me that I did not have asthma as my oxygen level was OK. Total rubbish, you do not use oxygen levels to diagnose asthma.
In February the asthma nurse at the gp practice rang me out of the blue to say that my asthma was life threatening, and any attack could kill me. Why she wanted to tell me this, I do not know.
So do not take one encounter with the gp practice too seriously, just keep on fighting.
One thing I have learnt is to put things in writing. My gp practice uses econsult, basically it allows you to email your issue to the gp. It works well, it stops the gp ignoring perfectly reasonable requests. I normally get what I want by using it.
Mine started using econsult during the early stages of the pandemic and it was brilliant as you could get a response from a Dr but they stopped using it and we're back to ring up at 8.15 and hope they have an appointment (I rang this morning and have managed to book a face to face for next friday, not for COPD but for a lump on my face that was infected and given antibiotics last week by nurse, over the phone and told if they didn't work need to see a Dr?) Only seen the asthma/COPD nurse at gp, still waiting spirometry but she was less than helpful. I left with an inhaler and strict instructions not to use it until spirometry which could be a while as there is only one nurse who can do it 🤔
Firstly COPD is Not a terminal disease, however it is Progressive. Yo can control this and slow it down. Many live over 30yrs with COPD. No one can state your life expectancy as anything can happen. You have to have an X ray and Spirometry test at hospital to diagnose and tell you what stage COPD is at. Mild ,moderate or severe.
I was diagnosed 2010 with severe COPD and am still here . xxSheila 💕⚘
Annoys me when someone is told C0PD is Terminal .I remember how scared I was when diagnosed and thanks to all the lovely members on this site my mind was put at rest. Being Positive is the best way forward and not concentrate on test results . They are a bunch of numbers and affect everyone differently.
There are some with much worse results than myself who are in a wheelchair and on oxygen 24/7 .This was told to me by my Consultant. My choice is to concentrate on what I can do and not dwell on what I cant.
I live my life the best I can and enjoy my excercise which is my shopping trips out. I take everything at my own pace and not rush, remembering to control my breathing. If I get out of breath I stop and rest then carry on. Theres no rush I have all day.
We all slow down as we age regardless of any illness and I always am grateful for every single day. There is always someone far worse off than myself. Enjoy your day. Just be Positive and keep away from negative people.
Appalled by what your surgery told you. Cannot add to what the people have said above, except this wise saying from a former member, Toci: don't commit suicide by sofa.
Did you have the tests at the hospital and was it a hospital nurse that advised you? If it was then you can contact the respiratory nurse and she can put you in for a rehabilitation course . I would ask your gp to refer you to the respiratory department anyway so that you have a consultant who can look after you. Your gp can't ignore what a consultant tells them to do. Sounds like you really need some help which your gp isn't giving you. If your in a practice perhaps you could request to see another gp x
We’ll! There are so many things wrong with your consultation that I could say I don’t know where to start, but that is not true. I have started so many times, I just don’t know where to end! And your head must already be in a spin without me adding to it.
For example - “the reversibility implies obstructive” An obstructive pattern is an obstructive pattern. Reversibility implies asthma not copd and I see from your profile you have asthma. ( That is not a diagnosis by the way, I am just trying to point out one of the many inaccuracies in what you have been told.)
Another thing that bothers me is you don’t seem to have been offered any treatment.
I think the best thing you can do right now is to ring the ALUK nurses. They will be able to talk you through everything, answer your questions and help you to devise a plan of attack.
I’d change to a different GP. You are entitled to better than this. I can’t help with COPD but I can with your back pain. You need a MRI scan on your back. I suffer from spinal stenosis and the surgeon I saw explained that different parts of your back control different parts of your legs. In my case it’s my lower back where the spinal canal is closed and this is affecting my quad muscles making it difficult to walk I also have the pain in my calves and take nortripyline to help me sleep through this. You may be able to have spinal injections to relieve the pain. Good luck and remember the GP is supposed to be there to help you.
Hi Sea 132,Your post takes me back to January 2009.I had just completed all my treatments for Lung Cancer in January 2009.After a short rehabilitation period I went to my GP to request a return to work.The GP looked at me and said you only have 2 years left why don't you take some quality time out with your family instead? adding,you know I once had a patient who lived 5 years with Lung Cancer,what a character he was,but you are not him Well every 5 years I send a anniversary card to that GP telling him I am still here.He is actually due another on this October since it's 15 years from my DX.
No one has a expired stamped on their foreheads so please ingnore that comment and go out and enjoy life
Whaaaat! Your gp, who probably knows as little about copd as my slipper, is God/providence/mother nature now? Oooh I'm cross! Can you guess? 🤣 Please take heart fom us all still here years after diagnosis. It is exhausting having to fight for treatment but I suggest you rest, recharge, and then ask to be referred to a respiratory consultant. They can give you an appropriate treatment plan and access to other respiratory teams in your area. (If there are any) I have no faith in gps at present.
Thank you to all the folks that replied to my message ages ago now. Its been a bit of rocky road with the problems I have been experiencing, but finally after a couple of years, they now agree to give me a ct scan for the copd, alongside the x ray and spirometrys (Ive already done 2 or 3 of now). I had to fight hard for the CT in a sense, now they also refer me for a sinuses scan due to the pain around my eyes, nose, headpains and ocassional bleeding from nose and mouth. Im glad I finally pushed things along, its helped restore my confidence a bit, I get the impression they would have left me in th lurch for as long as...
They were supposed to get back to me with spirometry reports last summer according to a another doctor I've spoken to recently, though no attempt was made at the time to contact me in that, the doctor I saw looked a little confused by this.
I was told to join this forum by a copd nurse, when I explained what many of the people here had said about correct diagnosis for Copd requiring a x ray, spirometry, and ct scan, after which both doctors and the copd nurse denied ever telling me to join this forum. I wouldnt have heard of it otherwise, I dont use social media in general, or computer much at all, I prefer to sit in the garden whe its not too cold and watch nature at work, or try play my guitar when able. As I said before not just the nurse, but the doctors I had previously seen where all resitant towards doing more tests, claiming I was incorrect according to NICE guidelines. I just want piece of mind, clarity, and to be sure there is no misdiagnosis, something I dont feel I have had before now, just a lot of speculation from some of them at points.
According to what i've been told from recent spirometry report that I have obstructive Copd that doesnt improve dramatically after revesaiblity tests, I can breath in ok thye have told me, but I am not managing to clear my lungs comletely of breath. It could be 6 weeks or so before both CT scans, sinuses and lung and copd stuff.
I also complained about the way the previous doctor had told me I was terminally ill, and ignored to process ct scan, instead giving me a spit vile for 'copd' testing. It's taken me a while to do this, the last year when I'd spoken to them it took the confidence out of me, having a little break down as the process felt impossible and frustrated. I dont like to go on about NHS, im glad it exists, my great grandmother was a nurse in th early days when the service had some level of consistancy and genuine empathy, even though it was in mountains of debt at that time, it's just a bit of a shame what is happening to it, overworked staff that seem rushed to see anyone for more than 10-15minutes, PFI's are surely not a solution, in the 1980's and earlier the service seemed to take health seriously, it seems all political, run the service to the ground to make them all private finance iniatives. To anyone else struggling like I have been, keep pushing to get what you need, try get appropriate accompanyment to go to appointments, as they seem to treat things differently when they see there are other people cocerned for your health, when they see that patients are not socially isolated they seem to suddenly take matters seruously. Thanks again to all the people that replied to me last year.
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BC Update with GP.
Recent COPD diagnosis
Function of COPD nurse at GP surgery
Results of recent X-ray-Early signs of COPD non acute 
newly diagnosed with copd
