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Anyone here located in Farnborough hants, Camberley area

Posted , 5 users are following.

carol85605
carol85605

Could do with some help/advice.  I have had bronchiectasis for more than 10 years.  I saw Dr Ho at Frimley Park Hospital was given some advice but the follow up discontinued after a few years.  I cannot use inhailers as they make me cough, so have no treatment.  I am fortunately free of infections but am often weak and tired.  I am told this is not due to my bronchiectasis as I do not get infections.  I have asked to be referred back to the hospital but was not that is not possible.  Can this be correct?

Thanks

1 like, 7 replies

7 Replies

  • steve62514
    steve62514 carol85605

    Posted

    I would go see my GP (that's a 'general practitioner' - ie equivalent to MD in the US -  for any non-Brit loooking in) in your situation and insist on being referred to a pulmonologist. BronchX is a chronic disease and you are entitled to specialist monitoring. If your GP does not agree to do so for no good reason tell her/him that you want to take that up through whatever appeal processes the practice has or through the 'NHS complaints procedure' (google the words I put in quotes) - I'm sure it will not come to that if you are polite but firm in your request to your GP

    I distrust the statement that 'weakness and tiredness cannot be due to your BronchX as you do not get infections'. Like others on here I often get periods of tiredness and ocassionally exhaustion even though I do not have a full-on infection at the time (and I only get two or three exacerbations per annum anyway - which are usually quickly despatched by a few days of increased antibis).

    Tiredness can be caused by reduced oxygen flow (due to restrictions / inflammation / damage to the airways) and/or by the onset of minor infection that your immune system is successfully fighting off and which does not present as an exacerbation.

    Tip - when you do get a wave of tiredness try either or both of getting up and walking around briskly for ten minutes or 10 mins of deep 'belly breathing' (raising your diaohragm up and down). I figured this would correct for any reduced oxygen flow which might be contributing to (or wholly causing) my tiredness 'attacks'. Be careful with deep breathing though - it can make you feel faint if you overdo it. Do it sitting upright in a hard backed chair rather than lounging in a sofa and particularly not doing very strong breathing when standing up (for fear of fainting/falling). I'm not a medic and have not been advised to do this type of response work by any medic - I worked it out for myself and it often seems to clear my tiredness or at least bring it under control. would be interested if it works for other people, though I guess that I should be advising people to try it only after talking it through with a doctor particularly if you have breathing or heart issues

    • carol85605
      carol85605 steve62514

      Posted

      Thank you Steve for your advice.  It was my G.P. that said my problems could not be the result of my Bronchiectasis as my chest on examination was clear.  I have checked my medical information and the only antibiotics I have had was way back in Feb 2010.  I do walk around and try to raise my adrenalin when tired and it helps for a while.  I also understand `belly breathing` but had not thought of it in connection with tiredness only exercise.

      The doctor I saw orginally is I believe a pulmonlogist.  

      Thanks again Steve

    • aitarg35939
      aitarg35939 steve62514

      Posted

      Here in the States, Steve, all medical doctors have an M. D. after their names. Otherwise they are not doctors. If they go on in their training & specialization then they might become a specialist such as an orthopedist, pulmonologist, or surgeon. But they all must first get that degree and pass licensing tests to be an MD.

      I'm in my 60s & we have used the terms "general practitioner/gp" and "family practitioner" or family doctor all my life, just as you use them. In the horrid '80s with the rise of managed care, AKA if-we-deny-them-care-we-can-steal-more-money, the term "PCP" for"primary care physician" came into use. With the rise of nurse practitioners or physician's assistants, PCP now means "primary care provider." These enhanced nursing degrees still do not rise to the educational and testing levels of doctors.

  • johnboy1954
    johnboy1954 carol85605

    Posted

    Hi,

    I have had BX for more than 20 years. The short version is that in recent years I have recurrent infections treated with AB's. The infections come and go but fatigue has been a constant side effect. My consultant has agreed that this is a consequence of the Bx but is starting to say that he has no idea where to go with it. I ma being referred to the Royal Brompton in London just to see if they can identify anything that might be causing fatigue. The fatigue impacts on my daily life at various levels and at times has caused me to feel very low. 

    I do not accept that it should be ignored and will carry on trying to get some answers.

    I have asked on this ite before and there are plenty of others who experience this - so no coincidence.

    Good luck. You have a right to be listened to and treated.

     

    • carol85605
      carol85605 johnboy1954

      Posted

      Thank you for your comments, I intend to contact my doctor again in view of your experience, and I will be asking again for a referal back to the hopital.
  • Cazbag
    Cazbag carol85605

    Posted

    I have been having investigations for my chronic cough and was told the CT scan picked up only 'subtle' bronchX and it hasn't been mentioned since yet I continue with an undiagnosed chronic cough and have recurrent infections. I too have bouts of fatigue where I don't feel I even have the strength to prepare dinner in between times of feeling well and being able to run 5 miles without stopping and lift weights. It really doesn't seem right that you are no longer under hospital care even if it was just a yearly check in and blood. The tiredness could be caused by constantly fighting infection couldn't it?

    • carol85605
      carol85605 Cazbag

      Posted

      Yes that may well be.  I also have periods of feeling very well and able to do more,  but unfortunately this year this has not been the case.  I will be returning to my doctor.  Many thanks
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