I'm new - be gentle!

I have been ill now for 3 yrs March, I started off with a chest infection which didn't clear up, was put on inhalers and eventually saw a specialist in the Oct 2010, gave all the symptoms of extreme breathlessness, coughing, wheezing, chest tightening, couldn't believe when he as much said it was all in my head, came out thoroughly depressed. I was put on lots of different drugs by the specialist, 3 different inhalers, prednisolone, 2 x ant- acids, (they found I had a hiatus hernia), carbocisteine, loratadine for inflammation of lungs, plus antibiotics when I get a chest infection, also 3 different strenghts of painkillers as I get occasional pains in different parts of my chest and back.

So, I bet you are thinking, wow, thats a lot of meds, I bet she knows whats wrong! Well, I don't, this will sound really stupid, taking all these tablets and not knowing why, I tell you, its not for want of trying, every visit, and they are about 4 - 6 months I ask them what is the matter, oh, they come up with other conditions they have found but not the most important one.

I saw the specialist the othe day, got quite emotional, bad day for me, struggling with my breathing, not being able to walk up the stairs with out using my ventolin, and having upped my prednisolone to 20 mg a day and still not working. I said to her I wasn't happy with using all this meds and not knowing what the problem was and the meds keeping it at bay, she then says she wants me to come back on Wed to see her boss as they are wanting to get me off the steriods after 3 yrs of use and to go onto an anti-cancer drug that will help me get off the steriods, they say they are going to have to monitor me more and do more bloods because of possible damage to liver and kidney.

Hopefully on Wed I will get some answers, but I doubt it, they don't seem willing to give a name to what I have!!

16 Replies

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  • This is disgraceful but does happen. I assume you are seeing a respiratory consultant? If not I would be asking for an urgent referral. I suggest you give the BLF helpline a call on

    03000 030 555. They are open from Monday to Friday from 10 a.m. to 6 p.m. They will be able to talk you through your medications and suggest what you need to ask your doctor to get some straight answers. Good luck.

  • Hi Jan

    This is totally unacceptable. I agree with auntymary re giving BLF nurses a call.

    Good luck - please let us know how you get on.

    Love C xxx

  • Totally not on. Ask or even demand a CT scan if you if you haven't had one.

  • that is disgraceful if i was you when i go back i would say look iv had three years of this carry on and no one will give e a answer i demand to kow what it is thats wrong and if you dont know then please allow me to see someone who does know because they cant keep giving you meds unless they know what they are giveing you them for that will cause more damage then enough so demand to know and if your not upto it then please take someone along that will because i feel you need to know soon. good luck and let us know please

  • Consider a change of GP, if that's possible. Go through the NHS PCT for your area: Worcestershire Health and Care NHS Trust, Isaac Maddox House, Shrub Hill Road, Worcester, WR4 9RW tel: 01905 760000 - explain the issues and see if they can assist.

    Also lodge a complaint with the PALS team on 01905 681517 or email them at PALS@hacw.nhs.uk - ask them to investigate what on earth has been going on.

    About PALS

    The Patient Advice and Liaison Service, known as PALS, has been introduced to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible.

  • Great advice from everyone, please take the action suggested.

    Lynne xx

  • Sorry to hear you feel so poorly Jan, some good advice here for you, hope you get some answers soon, take care and welcome to the site xx

  • Hi Jan, what a situation and I hope it gets sorted for you soon.

    In the meantime do what nourishes and nurtures you .

    Best wishes,

    PollyP

  • Welcome to the group Jan25 :) There's lots of good advice, suggestions and emotional support here for you. Please follow everyone's advice and get in touch with the BLF Helpline :)

  • Welcome Jan25

  • Hi I'm new at this as well but the advice is sound. You have been really unlucky with your lack of facts but I suspect the treatment is correct. Try to remain positive and hope the new consultation does the trick. Putting a name to your condition will help so keep insisting. Good luck.

  • Hi Jan,

    Welcome to this very supportive group of people.

    I read your post with great interest and as I read each sentence, the quizzical expression deepened and my ultimate thoughts are summed up in one word, bizarre!

    Other words spring to mind, unacceptable, outrageous and very cruel.

    You really do need to get some answers as this is going to cause you more and more distress until you find out what it is you are dealing with.

    You are not in the least bit stupid either. Dr's can be a bit intimidating and if we ask something and don't get an answer, it is all too easy to be uncomfortable asking further and I did that myself only last week.

    We all tend to think of Dr's as being the ones who know 'best' and it is a natural thing to trust they are doing what is right but you really do deserve to know what is going on with you.

    The very fact that you don't know is going to cause you distress and anxiety and make your breathlessness worse than it is already

    On Wednesday, when you go to see this Dr, I would take a pad of paper with you, give it to the Dr and as him/her to write down your diagnosis or a list of things that is wrong with you.

    If you dont get that list from him/her, I think you may need to look at getting another opinion - which you are entitled to.

    Good luck on Wed and be sure to keep us up to date

    Welcome again

    Kat

    xxx

  • Welcome Jan.please keep up with my Blog posts for a litte bit of humour to lighten your day

    Richard

  • Thankyou everyone for your kind words, they mean alot to me.

    I'm taking my husband with me on Wed for moral support. In fact, my own doc (who has been really good throughout all of this) rang up the specialist about a year ago to find out some results that hadn't come through, he spoke to the secretary, she told him that the specialist thought I had Pulmonary Fibrosis, the next time we saw the specialist he totally denied he had said this, we told him his secretary had told my doc and he still wouldn't have it, how close did I come to a diagnosise!!!!

    We made an appointment with my own doc and told him and he couldn't believe it either.

    I have got further though with the "main bosses" sidekick, she has told me I have a hiatus hernia, obtrusive sleep apnoea (using nasal c pap machine), I'm producing anti bodies against my thyroid which will need medication, awaiting tests back from hospital to see about acid reflux, although had test last August.

    I do actually prefer the lady specialist I see to the Boss man, he has no patient empathy.

    I will definately post again on Wed night, no matter what the out come, I will go armed yet again with questions.

    Do any of you find, if you ask a question, you tend to get a slightly hostile answer, like you have no right trying to find out information, if they mention a new tablet or procedure, I go away, look it up on google and find out as much as I can, at least then on my next visit I know slightly what they are on about, but the man boss doesn't like it!!

    Have a good evening you lovely people, speak soon.

    Jan xxx

  • I think we have all come across docs like that, but in general no, I find most are happy to answer any queries and sometimes do a Rolf Harris with a lovery drawing.

    He has no right to be hostile. He gets paid very handsomely for his knowledge and part of his job is to keep you well informed and answer your questions. It's your body and you need to understand his findings - only that way can you work as a team. Docs like that annoy me 'cos they expect you to give a good history but then are reluctant to share info. Don't be intimidated. Good luck Wed.

    Love C xxx

  • Have you asked your GP's surgery for all the letters sent to them by the hospital consultant? I had to ask because they don't seem to offer them to you unless you ask.

    When you next go to see the consultant I would suggest you ask his secretary or at the reception for them to send you a copy of all future letters they send to your GP.

    Good luck on your next visit.

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