Advice Please.

[velvet55]

I haven't said much about my illness on this site, as I was given the impression by my GP that along with Asthma I have Moderate COPD ( Fev 54% ) Given Symbicort, Spiriva, to go with my Ventolin, and to go home and get on with it as there is nothing more he can do for me, ( I think he was playing a good game on his PC again, he never looked me in the eye once ! )

Well thanks to you guys I am a lot more informed than I was 10 months ago and have made an appointment for Wednesday to see the respiratory nurse at my GP's surgery. My SATS are averaging around 94%. I have a permanent chesty cough and my ankles swell on days I feel breathless. I get tired easily but am lucky I can still do most things ( apart from running a marathon ! )

I haven't got a clue what is actually causing my COPD, by that I mean is it emphysema, bronchitis or both.

I want to go armed with a list of questions of things I am entitled to ask for, to help me cope, and keep me healthier.

I would value any of your contributions to put on my list.

I occupy a 65 year old body with a 19 year old mind !!

Thank you all in advance

Velvet xx

[Colours23]

Yea,docs don't seem to know that's why he did not look at you,your nurse will be a lot more help she will communicate with doc. She is the one to help you ,sounds like emphsema swollen ankles ,you need water tabs for that,I write lists of things I need but here and study what u can,have u been diagnosed yet by a specialist at the hospital ?? Then u know what your working with. A lot of it is self help, how about appetite ,sleeping, the out of breath thing never seems to change always there,I'm looking for an answer for 2 yrs now. They are not bothered if you want anything to make u feel good.....out the question.......I asked for some Valium that's what people with emphsema have ,for anxiety and there is a lot of that. But oh NO you can't have. Them ,blimey I told him I would go underground to get what I need,people do. Infact I had a few and my breathing improved but still NO ,he wanted to give me anti depressants , no I said I do not want my personality to change ,they are evil..NO. So I left with nothing. I may have to go private to get what I need. Happy days. Bonnie

[velvet55 in reply to Colours23]

Thank you for your reply Bonnie, much appreciated. I hope you finally like me get the treatment you need.

best wishes

Velvet xx

[Colours23 in reply to velvet55]

I have recently found out that doctors do not want to take us on with a chronic illness ,that's why they play stupid!!!!! Get the bloody nurses trained then !!!!Nhs has Gone completely!!?

[Hidden]

Hi Velvet - I think we were separated at birth! That is exactly the problem I have with my surgery - lack of information.

I have asked continually whether I have primarily emphysema or chronic bronchitis, they consistently refuse to tell me and I think they don't know. Copders usually have both but one primary one. They just insist it is all copd.

You can ask to see a consultant, but I was told that they don't refer unless the surgery can no longer handle my care, and when I tried to insist the dr. got annoyed with me.

Have you had a chest x-ray? (I had one but only 4 years after diagnosis coz they kept saying I didn't need one). Do they take your bloods (not blood gasses a that is a separate thing)? They take mine and was told they were fine and showed the damage.

You ought to have at least an annual review with the copd nurse, with a spirometry test, not just a peak and flow one as that mainly measures asthma. They should check your meds are working for you and you have the right technique. If you are feeling sob a lot then a spacer might help. This attaches to the inhaler and makes it easier to absorb. I always ask for my test results and ask them to explain them if I don't understand anything.

Google NICE guidelines if you are in the UK and they will tell you what you should expect at a review. x

[Hidden]

nice.org.uk/Guidance/CG101 This might help x

[velvet55 in reply to Hidden]

Hi coughalot2 thanks for the link I looked at the NICE guidelines...What an eye opener on what treatment we should be entitled to, I have a feeling my GP has never read it ( to busy gaming ) Well I will leave a copy for him on Wednesday when I visit the respiratory nurse, lets live in hope he finds time to read it, although I won't be holding my breath ! no pun intended !

A much more informed Velvet xx

[Hidden in reply to velvet55]

Glad it was helpful Velvet. Good luck as I have quoted these at my doctors before and they wriggle out of it. x

[Hidden]

Hi there,

The GPs cannot handle your condition without specialised help. They think they can because most of them are arrogant. Insist on going to a respiratory centre to be properly diagnosed by a consultant who has access to the right equipment and expertise in these conditions. They will then tell your GP what drugs to give you. This is your right so don't take no for an answer. This is your health and quality of life that we are talking about. Good luck. Let us know how you go.

[velvet55 in reply to Hidden]

Thank you stillstanding63 you are so right, and you have given me the resolve to do just that.

Velvet xx

[Hidden]

When I got diagnosed in April this year my GP told me I was mild and he couldn't see me having to go on oxygen ( I'm 58 ) then I went back 3 weeks later with a chest infection and a different Dr told me I was moderate, then last week the nurse told Me I was severe they refuse to send me to a consultant saying they can manage it at my surgery ( I feel scared and upset ). The thing is I don't feel that bad I just get a bit sb but nothing I can't cope with, confused.com

[velvet55]

They are not managing your condition satisfactory other wise all three of them should come to the same result, usually gained from a spirometer test. As stillstanding63 has posted go back to your GP and insist they refer you to a specialist, who will give you the correct diagnosis and what level and treatment you need. Given the correct information is essential for your well being. Good luck and don't take no for an answer.

Velvet xx

[Hidden in reply to velvet55]

Thanks velvet we go away on holiday now so when I get back I'm going back. I'm not happy even if I have to pay I will, I did say that but I can't without a referral letter from them might go see another Dr and just tell them rather then ask, trying to be nice haven't got me anywhere so far with this, Sally x

[velvet55]

Hi Sally, I am not against private treatment but there is brilliant treatment on our NHS if you can get your GP to pull his socks up and get you the specialist help you are entitled to. Enjoy your holiday and on your return let your GP see your assertive side. Power to us COPDERS !

Velvet xx

[Azure_Sky]

Methinks some of those doctors have been rubbing themselves down with snake oil. In some, but by no means all, their offers of medication are of about as much use.

I don't think all anti-depressants are bad. However, I have seen the horrible withdrawal symptoms caused by Valium. I wouldn't touch it with a barge pole.

In some cases, anti-depressants are used for pain relief/muscle relaxing. My friend is in constant intractable pain from a nasty back injury She has them and they help.