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Can I have some advice please

Posted , 2 users are following.

hypercat
hypercat

I have had asthma for around 25 years (I am 60) and 5 years ago I was diagnosed with mild COPD which has now just gone into the moderate range.   My COPD is stable with a couple of exacerbations a year which don't need hospitalisation.

I have an annual COPD review with a COPD nurse.  My questions are:

1)  My blood gasses are done

2)  I have a peak and flow test to determine my FVC and FEV1

Neither the nurse or the doctor will tell me whether I have chronic bronchitis or emphysema.  Should they do this and is it important I know even though the treatment is the same?  I know that damage is done to different parts of the lungs depending which one I have.   Or is it more likely to be a mixture of both?

What does blood gasses measure apart from the oxygen in the blood?   Does it indicate the severity of my condition and the damage done?

Is a peak and flow meter reading sufficient for an accurate result of my COPD re FVC and FEV1 bearing in mind it is usually used for asthma results?   Will it show the severity of my lung damage?

I was refused a chest x-ray on diagnosis and only had one done at my insistence a few months ago.   Is that correct?

I have never had a CT scan - do I need one?

I only had a spirometry test for diagnosis - is this a more accurate result for copd severity and should one of those be done every year?

I have asked to see a consultant and was told there is no need as the surgery can handle my care.  Is this correct?  

Is there anything else that should be done or not done at my review please?

I have looked online but find the information confusing and conflicting.

Many thanks.  xx

 

0 likes, 7 replies

7 Replies

  • hypercat
    hypercat

    Posted

    Oh I forgot to add that my last FEV1 last December was 66.3% but some of my symptons especially walking more slowly than others of my age seems to indicate a more severe diagnosis.  

    xx

  • DawnDedee
    DawnDedee hypercat

    Posted

    I am now 56 and was born with severe asthma which later in my twenties caused me to lose 70% of my lung capacity to permanent damage.  Now I have COPD with some emphysema.  I never smoked.

    I guess I want to share with you what I have learned with regards to being a patient.  You need to be your own advocate.  You have the right to be informed about your condition, the details of your test results and you have the right to politely demand what you need and want.

    I have the spectrometry tests once a year so that I can establish a baseline  of severity so changes in my condition so it can be noted and proper medication adjustments can be made.

    The peak flow meter is an excellent tool to determine your daily condition and you should be educated about when to adapt your medications and or go to the hospital for help.

    If you are having a surgery, then demand a lung function study beforehand and obtain clearance from a paleontologist and make sure in your pre-open appt. that they know of your condition.

    Also, going to an allergy specialist was a smart thing for me to do because I learned so much!  

    What medications are you taking?  

    Having been a pulmonary patient for 56 years, I have experienced the good, the bad and the evil with regards to medical personnel and I am savvy in figuring out how to obtain what I need to survive.  Remember, you live inside your body, not them and YOU are THE MOST IMPORTANT part of the medical team.  

    Stay strong and if I can share anything that might help you, then feel free to ask.

    Love and prayers,

    Dawn, in the U.S.

    • DawnDedee
      DawnDedee

      Posted

      I meant spirometry. ..my phone probably changed a few other words too!  Ha!
    • DawnDedee
      DawnDedee

      Posted

      And I meant. ....pulmonologist! 
    • DawnDedee
      DawnDedee

      Posted

      Sorry, one last thought.  To not do a chest x-ray is negligent in my opinion.  A ct scan is better and an MRI is the best, but rarely given for routine lung examinations.

      Also, take a list of questions and concerns and symptoms when you go to your review.

    • hypercat
      hypercat DawnDedee

      Posted

      Thank you very much Dawn.   I am on spiriva,  symbicort (200) and ventolin the blue one.  

      I do take a list of questions to ask but I get nowhere with them.  I have asked several times whether I have emphysema or chronic bronchitis but the doctor and the nurse all say it doesn't matter it's all copd.   

      I asked for an x-ray quite a lot until my doctor got annoyed with me and said it's not necessary as we know the damage from the blood gasses.  I eventually saw another doctor who agreed to let me have 1.

      Any other questions they blind me with science and their knowledge and I can't compete with that.   I don't have the medical knowledge to counter their arguments.    When I ask them to explain I can't follow it anyway.   

      I think I will repeat the same questions and if they won't answer or answer in a way I can't understand I will request a second opinion with a consultant.   No I won't request - I will formally ask for a second opinion.  That's the only way I can see myself getting anywhere.   I am someone who needs to know and understand everything but they treat me very much as a lay person.   Grrrh   

      Many thanks Dawn.

      Bev xx

    • DawnDedee
      DawnDedee hypercat

      Posted

      Yes, obtain a second opinion, and my experience has taught me to go outside of my current doctors professional circle, territory, because doctors do not like to step on a colleague's toes.

      I am rooting for you!

      Dawn 😀

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