Bad to worse

I finished yet another course of steroids and antibiotics on Friday and now feel as bad as before. It feels like I need to cough up something like a furball sitting in the top of my chest but my cough is so dry and huffing is agony. I have another appointment with a GP on Thursday.

The last appointment I had with her she said she couldn't refer me to a specialist, that has to be my respiratory nurse - does that sound right to you? Anyway, I have an appointment with the nurse on 3 May.

I feel like I've been hung out to dry.

Not only that but I have missed so much work, I had a meeting yesterday to discuss and dismissal was brought up.

I hate feeling sorry for myself and coming on here moaning but I am using all my energy to fight doctors and none to fight the condition!

24 Replies

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  • Im afraid this is what happens my GP told me that any thing basically that needs to be sorted with my COPD I have to go through the resp nurse whom is only at the surgery on a wed and has a waiting list of two to three weeks lol I have said this before but I think us with lung conditions get the short straw when it comes to care well from my experience anyway .I hope you feel better soon and get your problem sorted xx

  • Thank you. I think you are right about the short straw 😕

  • Wouldn't it be nice if your GP was actually on your side! You shouldn't have to fight for everything but sadly these days you do.

    Thinking of you. Xxxx

  • As your GP sent a sputum specimen for MC+S to make sure he is giving you the right antibiotics? Secondly he is giving you steriods as he checked your C Reactive Protein? A lot of GPs are now using this to measure inflammation. In certain cases such as lower lobe chest infections NICE Guidelines actually state that GPs should do this. The guidelines came out on the 23rd December 2016.

  • I haven't a clue. I certainly haven't given a sputum specimen. I put my faith in the medical profession because I assume they know better than me. I feel rough today but hopefully when I go Thursday I will have the strength to give her what for.

  • I find in 99% of cases keeping calm works. I would say perhaps do you think that a sputum specimen would be helpful as I still have symptoms? Or my chest still tight and I am breathless do you think I still have inflammation? Then tell him/her that CRPs are now being used as a guide to estimate this. Keep asking for opinions but remember most GPs are not Respiratory specialists and need guidance when getting you point across.Good luck.

  • My husband says I am too calm and that's why I'm getting nowhere 😃 I will try again. I really don't like making a fuss but I have been really unwell since mid November, including a trip to A&E over Christmas and I'm still no further down the line than when I was diagnosed this time last year.

  • I have never been ask for one either ,I doubt if our doctors in my town would of ever heard of C Reactive Protein to measure inflammation .I can never get to see a doctor unless I wait weeks its a phone call or see the Paramedic at the surgery who knows nothing of COPD .I cant change surgeries now either has we now only have two practises and because they now do it by area mines the only one I can go to it just gets worse xx

  • Seems to be an issue all over. My dad waited four weeks and of course was much better. He did however keep the appointment and is getting the help he needs now. I wish you well x

  • How sad your GP is not backing you up, and surely work could be more understanding. I hope you feel better soon,please let is know how you are getting on. Take care😊 xxx Bernadette

  • The way you are being treated for your COPD is really disgusting. I think it has more to do with were you live. Witch shouldn't be the case. Everyone should get the same treatment. I have no problems with my care. I just phone the community resp team. They are open 24/7. And I have my rescue pack on repeat prescription. Hope you get some help soon. If I was in your position I would go to my nearest hospital. My GP refered to the CRT so I wouldn't have to wait for treatment.

  • She wouldn't give me a rescue pack, also she said that Ventolin is bad for the heart - it's currently all I have and it's prescribed one at a time!

  • Dont come down to Littlehampton west sussex its the pitts for medical care for lungs x

  • It was my GP who made the referral for me. I would advise you get some advice about work too before agreeing anything with them. Perhaps you could consult a union representative or contact CAB?

  • I was with my union rep for the meeting. I know they have a lot of processes to follow but again, it's all fights that I don't need. They have been really supportive throughout but I know it's hard for them too.

  • Your doctor should be helping you fight your condition and doing everything within her power to make things easier for you. You shouldn't have to wait until May!

    I really feel for you and hope that you get things sorted very soon. XXX

  • Thank you. I am still trying to cough up my furball lol. My dad offered to come in to the doctor with me. Made me laugh, my 78 year old dad taking his 54 year old little girl 😊

  • It might be a good idea to take your dad with you, he might be more assertive and get you referred to see a consultant. I know when your ill you can't cope with anything, most of us have been like that. Look after yourself and take care x x

  • I had double pneumonia and nearly died , 6 weeks on l still feel rough. It could take up too one year to feel totally better. I wish you well

  • Thank you both. I have been sent home from work early because I was struggling. Roll on tomorrow. Can't have dad with me after all, seems he's had a better offer😂

  • I hope you get better soon . I put on 2 stone due to steroids! I got awarded p I p for another issue and can actually afford to live . Things are turning for me and do feel a little better of late

  • So pleased things are better for you. I am putting in my application for PIP today. I work but have had to cut down to three days. If I could pay for the odd cab and get a yearly prescription pass I'd be happy.

  • I cannot believe l won the award after all the horror stories etc . I can afford things now. I have anklosing spondylitis, it is not good but l can exercise when l feel better and I be okay. I get around 245 a week on p I p , rent paid and freedom pass , works out about 500 a week if you take tax , rent etc into account, l am so grateful

  • Good to hear that. So many people are turned down. If you don't have to worry so much about finances you can concentrate on managing your conditions and that is so important. Best wishes to you

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