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So so upset

Posted , 4 users are following.

jayne24241
jayne24241

I have just had a telephone call to tell me the chest speacialist has been on a extended holiday so I have to wait to the 14th May I just don't know where I'm going from here 😂

0 likes, 24 replies

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  • cc17
    cc17 jayne24241

    Posted

    Jayne, don't feel upset, get to see your GP as soon as you can get an appointment, who will hopefully tied you over till 14th May.  I have had to wait for some of my appointments and it seems like an eternity whilst you are waiting.  I am on IVs at the minute for 2 weeks doing them myself at home and they finish on Tuesday, I am counting the days, it seems as though its never going to end. Every 8 hours I have to IV which takes up to half an hour.  It comes round so quick, yet the two weeks are dragging.  Try and just go one day at a time.  Kind regards
  • John_N_B
    John_N_B jayne24241

    Posted

    Your experience Jayne is typical of some of the dismissive attitudes I have experienced from health professionals. It seems incredible that your treatment is dependent on one specialist - surely this doctor is part of a hospital team of specialists? Your GP should be able to refer you to another hospital if you feel your current care is not adequate. I know it might seem like a big decision to move hospitals, but if your treatment is left to the whim of a doctor's holiday plans you cannot be expected to just go along with this. Perhaps your GP has been advised on alternative treatments in this eventuality, so I agree, see your GP asap.

    Best wishes.

    • jayne24241
      jayne24241 John_N_B

      Posted

      Thank you John I don't think my Gp knows much about Bronch , the Nhs have got a18 week wait . The private specialist secretary did say if she had a appointment canceled she would phone me immediately .Thank you John it's just knowing what to say to him as I'm terrible and I forget .
    • cc17
      cc17 jayne24241

      Posted

      I paid for my specialist £2000 before I had a NHS appointment and wrote a lot of letters and did a lot of complaining.  John is right.  I changed hospitals to a specialist one who deals only with bronchiectasis.  Marvellous
    • jayne24241
      jayne24241 cc17

      Posted

      Where did you go this is bupa and I think he deals with bronchiectasis 
    • BookNut
      BookNut jayne24241

      Posted

      Be sure to write down all your questions.  It will actually help you relax, because you won't have to be constantly trying to remember all the questions.
    • jayne24241
      jayne24241 BookNut

      Posted

      Yes I will Booknut but it's so hard ...can you start me off what to say 
    • jayne24241
      jayne24241

      Posted

      I'm so sorry to be a pain 
    • BookNut
      BookNut jayne24241

      Posted

      Here is the list of questions I have so far for my specialist when I see her.  They are sketchy...not in question form.  If you don't understand, I will be happy to explain.

      DR. COAN/DR.BINGEMAN QUESTIONS

      DIAGNOSIS

      What can you tell me about non cystic fibrosis bronchiectasis?

      WHAT I AM DOING NOW TO HELP

      List here all meds you are using, including non-prescription meds, plus breathing exercises, general exercise etc.

      QUESTIONS ABOUT MEDS and treatments

      Inhaled saline solution...How many times a day? 

      n-acetylcysteine ...pills? or inhaled?

      meds for boosting immune system?

      antibiotic...should I take Azithromycin 3times a day to prevent exacerbations?  Should I change tomdifferent antibiotic once in awhile?

      mannitol?

      bromhexine?

      expectorant?

      Should I use nebulized asthma medicine for wheezing or shortness of breath?

      Flutter valve?

      Percussion vests?

      QUESTIONS RE TESTS/PHYSIOTREATMENTS

      alpha-1?

      pulmonary rehabilitation?

      sinus surgery?

      Hope this helps!

    • BookNut
      BookNut jayne24241

      Posted

      You are NOT a pain.  We are all here to get AND give help however we can. I hope you can find something very restfuland relaxing to do today and every day to relax.  Treat yourself.  You deserve it!!!
    • cc17
      cc17 jayne24241

      Posted

      Not at all. By all sharing knowledge we are all better prepared. No need to say sorry at all.

    • BookNut
      BookNut

      Posted

      Whoops.  Sorry.  I meant to delete the names of my doctors.  I just copied and pasted my lisy and made a few changes for your benefit.I always type my questions into the notes program which is then available from my ipad and iphone.  That way it is easy to add to and I always have my phone with me...so I needn't worry about forgetting my list!
    • jayne24241
      jayne24241 BookNut

      Posted

      Thank you so so much i really do appreciate all your help God bless you 
    • jayne24241
      jayne24241

      Posted

      One more questions if Bronch is mild would you have all the symptoms or does that comes later 
    • BookNut
      BookNut jayne24241

      Posted

      I think it is variable.  Some articles don't even list wheezing and cyclical infections as symptoms!  I have also read that many people have it, but have no symptoms.  It can be caused by a few or many repeated infections, and it can be caused by one very serious infection.  The best aryicle I have read so far is on medscape.  I would give you the link, but that would cause my reply to be held for moderation.  If you can't find it, let me know and I can PM you the link...along with some other links I have saved.  Can you tell I am. librarian?  Research is my thing.  It is VERY important that you know who is oosting the info.  For health related topics, I would stay away from Wikipedia and from drug company websites.  Let me know if I can be of help!
    • jayne24241
      jayne24241 BookNut

      Posted

      Would you most kindly pm me the link I will be most appreciated x
    • charles60050
      charles60050 jayne24241

      Posted

      Bronchiectasis is not rare and GP should know about this.14th May is not too far away but as John said the consultant chest physician is part of a team.Look up the consultant on the hospital website and possibly phone the secretary and ask for a earlier appointment. If you are having pain do take regular analgesics not just when it hurts most because paracetamol or ibuprofen will work best when taken regularly 3-4 times a day.
    • jayne24241
      jayne24241

      Posted

      My only worry is my breathing sometimes chest and back ache not a lot of mucus though that's why I don't understand 
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