Good morning to you all. Well I went for my annual check up yesterday well armed with questions since joining this site. First I saw the respiratory nurse who gave me all the tests. Then I sat there and put all my question to her. She was surprised to say the least and told me most people with copd don't normally ask much !!! She obviously hasn't come across us guys !
To cut a long story short, to my surprise when I asked about pulmonary rehab courses she said she would put me down for one....On asking to be referred to a specialist she said I would have to see the GP.
I went to the reception desk and said.... I don't suppose there is a cat in hells chance of getting a GP appointment this side of Christmas !.. I was shot down in flames when she said there was one going in 10 minutes !!!
I saw the new young doctor who was very attentive, and helpful. He has given me a course of carbocistine to try and make it easier to clear the gunge out of my lungs. ( I want your comments please if you have taken this )
On asking to be referred to see a specialist, his reply was the same as the nurse, " as we are managing your copd in the surgery, you do not need to see one "
Here comes the new Assertive Velvet.
I told him I disagree as nobody in this practice can tell me exactly what I have, that COPD is an umbrella term for a variety of condition and I would like to know which ones I have, I told him that I didn't think this was an unreasonable request. ( I was on a roll so I went for it )
He finally agreed with me but said he could not refer me, he would have to clear it with the senior GP, he didn't hold out much chance of me getting a referral. I asked him to tell him I am insisting on one and if I am refused I will take it further.
He is now sending me for an chest x ray just in case anything sinister is going on, saying that it will save the specialist time !! Maybe there is hope yet.
For those of you who are interested here are my results.
FEV1 50%.....FVC 74%......PEF 57%....FEV/FVC 60%
And finally this is me.......65 years old.....mental age of a 19 year old......and it's officially on my report,...... Lungs of a 90 year old...... Well sod that my Dad is 89 and lives life to the full, I aim to do the same.
For all of you who have had the patience to read this lot...Many thanks....and Assertive Velvets new motto is ...Power to the COPDERS....
Velvet xx
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velvet55
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Very well done. I have a similar problem with my Consultant, he seems to prefer broad terms to specifics. I am wondering whether to telephone his Secretary and ask if he can check my scan for emphesymia and tell me where it is ! On my next visit, he is doing an asthma test, which was my first diagnosis. My Grandad had bronchial asthma, I am just wondering ...
Good stuff Velvet! Well Done! I have been reading a lot of the literature on here and realise I should have been doing and asking a lot of things 5 years ago that I just didn't know. Infact am about to print some more off. Like you appointments at our GP's surgery with a particular Doc are hard to get. One of our Docs suffers from asthma - my background illness and I made an appointment over a week ago with him and the appointment is on July 28th. Worth waiting for though as at the moment we have a lot of new docs in training, we get a rash of them every year and although great for most things and would be good to have an in depth discussion about my illness with them if they had time - as they are more up with the newest ideas and thinking as with your new Doc they can't do much without referring you to another Doc - so another wait. So off to print out more leaflets so that i know all the questions to ask.
Well done Velvet, its taken you hardly any time to become a role model for the assertive copd patient
Carbocysteine doesn't help me but others here find it invaluable. There is also a thing called the active cycle of breathing which you could ask your respiratory nurse about - it is designed to clear mucus from the lungs and works well. I can't remember exactly how it works but maybe someone will come on who does know. We were told about it in one of our talks following the PR exercises, so much for my memory. And well done you, for getting a referral to PR, you won't regret it
As you probably know 50% fev1 is borderline moderate/severe. As far as i know, the only reliable way to know precisely what is going on in your lungs is to have a CT scan and generally only a consultant can refer you for one. Re seeing a consultant, its hard these days to know whether a decision is made on clinical or financial grounds, very irritating - always an interesting question to put to them when they are denying you something like a consultant referral.
Anyway, keep up your assertion. The more of us do this, the more they will start seeing copd patients not just as passive recipients of their care, but as being in partnership with them in working out what is the best treatment. Our copd presentations are all different, and we are the ones who know our bodies best. x
Well done you! I like this new Velvet who is determined to live life to the full and get a referral. Good luck and don't let them turn you down. Onward and upward! You take care and wishing you well. xxxxxx
Way to go Velvet, at my last yearly, I decided to ask the nurse what is was that she had said the year before that "Was 88% but, we know about it and will keep an eye on it." (It wasn't my FEV1 which is 65%.) It had played on my mind all year.
She'd retired when I got there, so I asked the new nurse instead. Did I get an answer - no, she just babbled on about something else and how my results were exactly the same as last year. She would make a good MP. Lol. So, Velvet, well done you!!! xx
Pleased to know you haven't gone down from last year, mine are about the same. I asked the nurse as she printed out a copy for her notes if she would print one for me, she said she shouldn't... so I said well they are my results and who is to know you have given me a copy.....she printed me a copy.
Don't let them use the xray to put you off going to a specialist What the heck do they mean by 'something sinister going on'? Undiagnosed lung disease is sinister enough as it needs proper treatment. We can go on stoically appearing to be 'under control' to our GPs because without the proper tests it is impossible to see what is happening in our lungs and with lung disease you often slip slowly down the tree, which is not obvious to a GP. Your GP practice really does have the cheek of the devil. They must refer you if you demand it and I really don't know where they think that they are coming from in using deferring tactics rather than just doing it. Put it in writing that you will make an official complaint if they continue to put your health at risk by refusing to refer you to a specialist. Gosh you have enough to deal with without the hassle that they are giving you. I have taken carbocystein on and off over thirty odd years and it never does anything for me. I find breathing tecniques and my new aerosure device to be the best. Other people seem to find carbocystein very useful so I guess you will decide for yourself.
The more I read on this site the more I think I should start. GET THE GPs OFF THEIR BACKSIDES campaign. I am on the Patient Participation Group at my own surgery and GPs there bend over backwards to get the help for their patients that they need. I simply don't understand why GPs at so many other surgeries are resistant to doing their job.
Good luck Velvet. I do hope that you get what you need. Please keep us up to date because there are a lot of lovely people on here rooting for you!
I know I have tried to be assertive at my GP's and will continue to do so, I will not be put off without a fight, I would love to take you with me on my next appointment you sound as if you would give him 'both barrels' I will practice some of your quotes, and do the same. Can I join your campaign...
Yes Velvet, all are welcome to join! We just have to be brave and keep demanding our rights, which is very difficult when you feel terrible and worn out. You are doing incredibly well and. I don't know how people go on without the support of a consultant and specialist chest clinic. i have been with mine for 30 years. Without them I would not be here. I have also heard so many times that GPs refuse to give the drugs which the consultant prescribes but then the consultant can chase them. Mine have in the past. Have a look on the internet for the chest clinics and consultants in your area and go to your GP armed with the hospital and name that you wish to go to. The more they can see that you know what you are talking about, the more it concentrates their minds. I do wish that I could go to the docs with you but I will be there in spirit.
I was diagnosed last December when I went to see him because of a persisitent cough and the spirometry test confirmed COPD. I was prescriped anti-biotics, sent for an X-ray and given the one off injection against pneumonia bacteria as well as a flu-injection. When I went back for my X-ray results I was armed with a shed load of questions (thanks to this site I knew what to ask) which he answered in terms I could understand.
I think I must be one of the lucky ones.. my GP must be a bit of a gem.
Power to the Velvets I say.Hi Velvet you are my type of Copd -er,we need to be strong.With a Fev of 50% you should be seeing a consultant as it is a specialised subject.Best of luck,D. 💐
Velvet, I really admire your persistence. Of course, you are entitled to a consultant! Never heard so much baloney from a GP like this before. I'm glad you told him you would take it further. I fnothing happens, do take it further. I did this for my wife who is mentally ill. The psychiatrist didn't like my complaining, she was told off and ask to evise her attitude or else!
Don't ever let yourself fobbed off. Docs are very well paid (£2000/week!), even if it might be a boring job to stay listening to patients' ills, but they train for it, so they should do it or change their job!
So you have a mental age of a 19 year old and my daughter thinks I have a mental age of a 9 or 10 year old so maybe we should get together and you can guide me through my teenage years.
Mini skirts, long boots, long straight hairstyle Back combed of course, and that was just for school !! ( much to my mum and dads disgust )
Hot pants and Cat suits for the evening ( much to my mum and dads disgust )
Mods and Rockers, I was a bit of both...loved the mods dress sense while bombing around on the back of my boyfriend's motorbike. ( much to my mum and dads disgust )
Hippies and flower power. Bring it on.....( Much to my mum and dads disgust )
Elvis, The Beatles, The Stones, The Who the list goes on... all played at full volume in my bedroom ( much to my mum and dads disgust )
My first car. A little mini. I drove to fast ( much to my mum and dads disgust )
Oh yes I was there. Done it and got the T shirt. Fantastic Happy Days.
I must add in case you get the wrong impression, I had the most fantastic parents, who were there for me all my life and who I loved dearly.
I still have my dad, he's an 89 year old rebel who lives life to the full, After all these years I have finally realised who I took after !!!
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FEV1/FVC percent 66 % 
New and just saw pulmonary specialist
Spirometry results - help please!
Diagnosis for mild copd?
got my resulits 
