I am a newby

Found this site by accident, and so glad to read all the helpful posts. I have had COPD I now realise for at least 20 years, but i was only told by my G.P. 10 years ago. I haven't been given much information or help, apart from an annual spirometer test which takes about 10 minutes. It was only recently that I discovered that my g.p. Surgery has a respiratory nurse, but nobody told me and she has never been in touch. Over the last 6 months I have felt very ill and my breathing has got a lot worse. I think it may have been my fault, as we were on holiday in Spain at Christmas and I was coughing a lot and breathing was really bad. I had some Prednisilone with me so started to take it at 40mg a day ( I have taken it before when breathing got worse) but I didn't feel any benefit, so I carried on for a further week. Still no benefit, if I had been in England I would have gone to A and E. Anyway I hung on and we flew home , felt dreadful on plane. We went straight to our local hospital and I was admitted. However, this is going on too long, so I will hurry it up. 6 months later I still feel awful, can only walk a few steps. My g.p. Has referred me for an 'oxygen assessment' but 5 months later no response. She says that the hospitals machine for doing the assessment has broken down, so I have to be patient! I was told off for not 'tailing off' the steroids, but I didn't know this. Whilst I was in hospital I was put on another 2 week course of steroids and my g.p. Prescribed another 2 week course when I came home. I now have the Cushings Syndrome neck, which I am told is a side effect of steroids. Last month I got Shingles, and I discovered on line that this was possibly due to my immune system being compromised by steroids. I still have shingles which is very painful, I feel very unwell, and can't get a g.p. appointment for 3 weeks.

I am so sorry I have gone on a bit, just getting all this out has helped, and reading on your site that I am not alone. I would love to read anybody's comments and advice.

12 Replies

  • Hello Eugenie and nice to meet you.

    It has taken me a few moments to close my dropped jaw at the offhand way your GP has told you to 'be patient' after waiting five months for an oxygen assessment when you can hardly walk! And now you are suffering shingles as well...

    Someone else will be far more informative than me with regard to the steroids, but I feel you need a new GP or a serious word with the practice manager about their casual and, possibly, damaging approach to your care.

    I do hope you get some help soon..

    Tee x

  • Hello welcome to the site. I don't understand about the oxygen assessment, I was told I needed oxygen when I went to do a Pulmonary Rehab course, its the nurses that prescribe oxygen not the doctors. Do you think he might mean lung function machine. Did you have an infection when you went in hospital you don't mention Antibiotics.

    Kim x

  • There's no machine for oxygen assessment. Testing your blood gases and a 6-minute walk test is how people are assessed for oxygen. Well, as far as I am aware but maybe someone else can enlighten us further.

  • Hi Eugenie and welcome.

    I can't get my head round what's happened/happening to you either. I think that you need to concentrate on turning your situation round - maybe go back over what went wrong later. You need a GP who will look after you and sort things out. You need to see the respiratory nurse at the surgery. You need to be seen now by a GP - 3 weeks??! - so what about a home visit? Perhaps best to get the Practice manager on board.

    Do you have a respiratory consultant after your admission? Would that be a way in to get yourself sorted? You need O2 assessment - basically blood gases. You need proper treatment for you COPD. Steroids alone aren't the answer. If you do take them for more than two weeks you do have to tail them off. And you need pain control for your shingles.

    Sorry, I'm banging on, but I do feel for you. You need more help than you're getting. Good luck, and keep in touch. Sue x

  • Hello Eugenie, and welcome to the Community.

    Steroids strictly only need tailing of if you have been taking a large amount or have been taking them for a long duration. The Dr prescribing them should advice you when you need to reduce gradually. Advice is also usually on the leaflet in the meds box.

    You Cannot Wait 3 weeks. You need to see the Respiratory Nurse this week. Failing that then the Practice Nurse. At least they can go and speak with a doctor and get things moving.

    Hospitals have a permanent specialist oxygen nurse. They take your oxygen readings at rest and after a walk, if you can, a spirometry test followed by a second one after using either an inhaler or oxygen. An arterial blood test is performed and sometimes an Xray. These are the only machines used. Although they usually come after a referral to a Consultant.

    The only other machine that is occasional used is a CT Scan. This is if the Consultant thinks that you may have a more difficult disorder like Bronchiectasis. Which cannot be seen on Xray.

    If you are able to cough any product (especially if green or brown) then this sputum should be taken to your GP in the morning so that they can get a pathology test run and target it with the best antibiotics.

    Regards, Rib

  • Hi Eugenie ,I'm a newby ,I was upset to read your situation,you need an advocate ,someone to fight your corner,or is it possible to change your doctors,you need support my friend,and when you don't feel well it's not easy,could you get family to help,shout from the roof tops my darling ,tell them what you need ,and don't be fobbed off,after all the doctors and proffesionals are just the same as us ,human beings with some learning that we don't have ,they are not gods,in the main I find them very caring and very efficient,you must try and surround yourself with some supportive help.keep fighting ,I'm rooting for you luv moyz.

  • Hello Eugenie. First don't apologise for a long post. You need to get all your thoughts down and noone minds. ❤😊

    I am not familiar with the medical practises in the U.K. but I will say your current medical team don't seem very satisfactory to say the least. Is there any way you can see another doctor as soon as possible?

    Please do keep us updated. I am thinking of you today.

    Cas xx 🌷

  • Hello Eugenie. Welcome to the site.

    Apart from all the problems with your GP (!) you didn't say whether you have actually seen the respiratory nurse at your surgery. I have found mine the MOST useful source of information, support and help. She prescribes for me and referred me to Pulmonary Rehab, and ensures that I have access to everything that might help my condition

    She is an expert on respiratory problems, and unlike the GPs, specialises in the conditions, so is more knowledgeable, and has more time for me. I would highly recommend that you make an appointment to see him/her.

  • First move is to ring surgery and demand an appointment with the respiratory nurse, as you know they have one. All my care has come through my lovely nurse - not been seen by the surgery doctors for four years!

  • First you don't ever have to apologize for going on as venting helps at least to a degree and we have all felt similar even though everyone's circumstances are a bit different. You have certainly endured more than your fair share so you have a right to feel the way you do and not being able to get in for an oxygen assessment or to get back in to see your doctor for three weeks are just compounding your situation.

    I sure hope you can get some help and some answers and solutions soon.

  • Hi Eugenie and welcome to the site. I am appalled by the situation you are in and agree with what everyone has said here. I am very lucky and have a wonderful doctor and respiratory nurse. Can you change your doctor and/or surgery. You definitely need to be seen at once not in 3 weeks time. Barbs x

  • Welcome Eugenie - I can only echo what everyone else has said. I truly believe you need to change your GP as the one you have is negligent!! I hope you do change and find a good one. Hugs and best wishes. Please let us know how you get on. xx

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