Hello everyone

I was diagnosed with COPD about 5 years ago and on further investigation was also found to have bronchiectasis . In 2011 I had about 9 exacerbations and last year I had 15, I am really struggling, I have asked the Dr. to refer me back to the hospital but he refused saying the hospital had discharged me into his care and that they would just give the same treatment as him. ( steroids and ABs) I have never been asked for a sputum sample by any of the Dr.s at the practice and I can't help but have little faith in any of them. I am so fed up, each flare up puts me on my back and some days I struggle to walk the 10 paces to my bathroom. I have no energy, also my left ankle swells and left hand tingles, my fingers and feet get cramps in them and my fingers itch like mad it's as if it's the actual veins themselves that are itching. Please don't get me wrong, if this is my lot then so be it. I just can't help feeling that I am not being looked after as well as I could be.

Well that's enough moaning from me, I am going to carry on browsing the site which I find so helpful and which I might add was what prompted me to question my care in the first place. Take care everyone xxx

p.s I am 50 feeling like 150

23 Replies

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  • Hi Coffalot, What does your respiratory nurse say? You can also challenge your doctor by going through your primary care trust and asking for a referral to hospital. I really hope you manage to get things moving in the right direction.

    Best wishes

    Witty

  • Hi Witty,

    Respiratory nurse isn't much help I'm afraid, last few times that I went she couldn't do anything, she says I have to be off steroids and abs for 4 weeks before they will take any readings I told her not to hold her breath then. lol

  • The only thing I can think of as I am not sure about your position would be to ask your GP again to re refer you as you feel you are deteriorating and could benefit from a specialist in respiratory medicine assessing you and your treatment - and your GP can not deny a respiratory specialist knows more than he does

    And if he again refuses, tell him you would like a second opinion and that, you do have the right to ask for

    You also have the right to the best possible care available to you

    Kat

    xxx

  • I think it is your right to be referred back to your consultant. I was having back to back infections a couple of years ago and the doc kept prescribing the antis and steroids in the end I insisted that I get referred back. I was not off the antis or steroids. I had decided if I she would not reffer me I was going to phone my consultants secretary to see if he could suggest what to do.

    The consultant sorted me out and (touchwood) I have not had an infections since.

    polly xx

  • awww Pollyjj that is terrific to hear. Definitely will put the pressure on. Thankyou and may your good health continue. xxx

  • Thank you Katlover and Witty for your replies. I will try once more ( shakes head ) because I'm worth it, I just feel like I am a nuisance and shouldn't be doubting them.

  • Hi Coffalot, it sounds like you're really having a bad time. I have emphysema and have never been discharged from the hospital for the past 18 years. First I went every six months, then every year, then after a bout of pneumonia 5 years ago or so, once I was discharged as an inpatient I went to the Lung Centre at the hospital every six months until 12 months ago when it was changed back to every 12 months again. Don't you have any inhalers/tablets to take as well as steroids and abs? Do you have the community matron service at home and have your blood pressure and sats taken regularly? With all the other symptoms you are suffering it seems you could do with a reassessment and I would push your gp for one. You're not moaning, you are obviously struggling badly. You need to be sure you are receiving the optimum treatment for your condition(s). Libby x

  • Hi Coffalot

    Are you on oxygen? For the swelling in your ankles you should be given a diuretic, such as Furosemide....you have a build up of fluid.

    I can understand how frustrated you feel, you doctors don't seem to be doing much for you.

    and downheartening getting so short of breath, as you appear to be.

    If you are not happy with your present doctors I would seriously consider changing to another practise.

    Mary

  • Hi Libby and Mary

    yes I have other meds, seretide 500 morning and night, carbocisteine to thin the mucus 3 a day nebivolol for blood pressure, nasonex nasal spray morning and night and my nebuliser.Touchwood I don't need oxygen yet. I will try my Dr.s once more if no joy I think I will phone the hospital. Thankyou

  • It might be worthwhile having words with the NHS PCT for your area and see about changing GP, often that is the only way to get the treatment you really need - try 0238 062 7444 or email yourviewscount@hampshire.nhs.uk - the website is hampshire.nhs.uk

    It may be worth having a chat with the BLF helpline and see what they can say that might help. Also check for Breathe Easy groups in your area (Hedge End ?) and ask them if they can recommend a surgery with a COPD nurse. If you're not sure where the nearest group is you can find it on the BLF site.

    It might be worthwhile asking for a test for CREST Syndrome, in particular Raynaud's. It affects the hands and feet as you describe, usually with a feeling of coldness. I have it, hence the suggestion. :-)

  • Thankyou Gordon, I do have cold feet, neighbours often hear hubby scream in the middle of the night as I try to warm them on him lol . I will start the ball rolling with a visit to the Docs on Monday. xxx

  • Hello :) and welcome to the group !

    I'm a bit late coming in on this one coffalot, so can only endorse what everyone else has said. You are not asking for anything you are not entitled to and you do deserve the best treatment and you are most definitely NOT a nuisance !! :)

    Keep on keeping on ............

  • Thankyou for the welcome elian and to everyone for taking the time to reply to me I will keep you all posted. It makes such a difference just knowing that there is someone out there who is willing to listen and offer advice where possible. Thankyou xxx

  • I am surprised that the GP or nurse has not requested a sputum sample from you to send off. If my memory serves me well I am sure that we can have different types of bugs in our lungs which will need different antibiotics. I would ring the help line on here on Monday, they will give you good advice. Hope it goes well for you. xx

  • I'd echo the post about diuretics - my husband was having exacerbations every 6 weeks, and each time he was put on diuretics - he was OK until taken off them, he was told it was lowering his blood pressure. turned out his heart rate was too high - the normal treatment would have lowered his BP but the cardiologist put him on Ivabradine, which slows the heart without lowering BP, and means he can take the diuretics now. He's had a couple of flare ups (he has fibrosis) but nowhere near as often as before.They don't seem to look outside the box of their diagnosis ! good luck. Gill

  • Hi coffalot, ditto to what has been said. Get back there and ask for the re-referral. Good luck. x

  • Hi Coffalot

    I am so angry and upset on your behalf. You are not moaning. Your gut feeling is telling you you are not getting the treatment you deserve and that is my gut feeling also. I assume you had a ct scan for them to dx bronchiectasis - how long ago was this and was the scan ordered by a consultant. If so what reason did cons give for discharging you and was the cons a general respiratory consultant? Sorry so many questions - just trying to glean how this came about.

    In all my years of having bronchiectasis I have met so many GPs who are not up to speed with bronch and there is no way they can be as knowledgeable as a respiratory consultant who specialises in cystic fibrosis/bronchiectasis.

    If you have bronchiectasis it is so important that you are monitored by a respiratory consultant, especially as I say one who has a special interest in cf/bronch. I may be able to help you with finding one if you pm me. They will also be very clued up on your copd.

    Firstly you have to work out what to do about your GP. Do you belong to a practice where there are a number of docs. If so I would defo try and see another. If you live in an area where there are other surgeries and you get no joy from yours, you might want to change gps.

    This is what you can expect from a proactive cf/bronch consultant.

    As well as the usual history, examination, bloods and lung function tests cons may send you for a sweat test (nothing to worry about - just iliminates cf). Would also refer you to a respiratory physiotherapist to learn techniques and show you gadgets to enable to do your own physio and get rid of all the mucus which builds up constantly in your lungs. Between you you will find the best technique which works for you. It is the most important thing you can do for yourself.

    Cons would discuss inhalers and may feel a mucus thinner medication or nebulising saline may be of benefit to you.

    You should have access to a specialist respiratory cf/bronch nursing team.

    Cons will defo take a sputum sample. Will also decide after having all results on the best treatment regime and will inform your GP of his recommendations for treatment.

    Many cf cons can arrange home IVs if necessary. This is good because it can keep you out of hospital.

    Apart from the fact you should be seeing a cons for bronch anyway, I think your request is justified as by your own figures you have had many more exacerbations in 2012 than in 2011 and you had too many in 2011 anyway. I'm trying to work out if you had 15 how long were your ab courses for.

    Good luck with this. Stay strong and assertive - it is your health at stake here and you deserve the best treatment. pm if you need a chat.

    Love C xxx

  • Hello coffalot. I don't know much about copd, but I do have bronchiectasis and imo you should definitely be seeing a respiratory consultant who is expert at managing this condition - ie not a "general" resp physician.

    Here is a link to the British Thoracic Society's guidelines for the management of bronchiectasis, issued in 2010 and recently validated

    brit-thoracic.org.uk/Portal... ectasis/non-CF-Bronchiectasis-guideline.pdf

    If you look at section 4, which starts on page i26 you'll see that all those exacerbations mean you should definitely be under the care of a hospital, not just your gp

    I just looked at your profile to see where you are and luckily for you there's an excellent respiratory unit at Southampton City. I don't know whether this is where you went before but here's a link to the unit from which you'll see they do treat bronchiectasis (they have an Adult Cystic Fibrosis clinic, which is a good sign as that's very similar in the way it affects the lungs) uhs.nhs.uk/OurServices/Resp...

    If you click on the names of consultants in the list you'll see those who have an interest in treating bronchiectasis

    I see 2 bronchiectasis specialists, one near my home and one at the Brompton in London, so it's not much for you to ask to see just one!

    love, ff x

  • Further to excellent post from my friend ff here are a couple of consulatants at the adult cf clinic, from a list I have dated 2010. You may want to 'phone and speak to them direct.

    SOUTHAMPTON

    Southampton General Hospital

    Tremona Road

    Southampton S016 6YD

    Tel: 02380 777222

    Dr Mary Carroll

    Dr Julia Nightingale

    Good luck hun

    Love C xxx

  • I have copd, whenever I had infection the resparatory nurse took a sample of sputum. Than I was under the care of my Drs practise, similar thing , don't need sputum test!! Having spent 2 weeks in hospital with exacerbation I wanted to check that I was clear, I got a sputum pot from surgery, took it to Dr. And asked for it to be sent off, also asked when I should ring for result. This plan worked this time,will try it again when needed. I agree with all the other comments, it is you health!! Polly63

  • three years ago i reacted to flu jab.... it was then diagnosed brittle asthma, copd, bronchieactis, and though i have excaberations during the summer or warmer months i am ok during winter months..... i am currently undergoing all the tests again, because i wrote a letter stating my case history and the facts surrounding it..... i cannot fault the wonderful service i have received in emergency from the hospital... but you need to put the pressure on... write a letter and deliver it by hand, or get someone to do it for you...all of us know how debilitating t can be with lung conditions.... i sincerely hope you get the support you so need....and am really sorry to read of your experience :(

  • How unfair! You are certainly entitled to better treatment. Is there a specialist respiratory team in your area rather than just a nurse at the practise? We have a specialist team in our area who you can ring and ask advise and help. Is there another Doctor you can be referred to. I would be inclined to ring the hospital and try to talk to the consultant or at least his PA. Its hard when you feel ill and you have to fight for better treatment. Good luck. PS What about the BLF helpline - they might just have some good advise. TAD xx

  • I am so sorry that you are not getting the right support from your GP. I am in the wonderful position where my GP and the Practice are excellent in giving me, and getting for me, the support that I need.

    My GP talks with my Respiratory Consultant and they do what each are best at.

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