Who to turn to?

Hi,

I need advice on who to turn to next.

My recent bodyplesmography tests continue to reveal restiction as well as obstruction in my lungs. Currently, I am being treated for mixed form asthma, sleep apnoea due to significatly elevated AHI due to sleep disordered breathing. I know that this is an umbrella term but my consultant seems reluctant to break it down further. Other doctors have said that my brain is not providing the signal to my respiratiry muscles.

CPAP is definatetly helping my sleep apnoea however my concern is more about my lung function tests which continously demonstrate restriction. I asked my respiratory consultant ( a young professor) if I have any other lung disease other than asthma and he responded after much deliberation with an unconfident sounding no.

Where does that leave me, the PFT results suggests otherwise ... Any suggestions?

11 Replies

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  • A 2nd opinion to which you are entitled mauschen. Ask if there is anyone else you can speak to. Good luck and hope things improve for you. Xxxxx

  • Good Morning Mauschcen, sorry you're having such a tough and worrying time. I don't have any advise, except to agree with sassy, just wanted to send positive thoughts & prayers Nan

  • Hmmmmm..... very unsatisfactory. There are conditions that can present as both obstructive and restrictive. Have you got the numbers for your PFTs? There are some knowledgeable chaps and chapesses here.

    Push for more clarification.

    K

  • I have tried to copy and paste results but it doesn't work therefore, I have typed them in in the format of what they should be/ what the actual value is. Hope you can understand.

    FRC should be 2.64L /actual 1.74

    RV 1.81L/0.86L

    TLC 4.77L/3.25L

    RV%TLC 38.34%/26.59%

    VC 2.81L/2.38

    FVC IN 2.81L/2.38L

    FVC 2.72L/2.11L

    FEV1 2.30L/1.89

    FEV1%VC Max 78.27%/79.27%

    PEF 5.98L/s /6.29 L/s

    MEF 75 5.33 /6.29

    MEF 50 3.66/3.48

    MEF 25 1.37/0.44

    DLCO 7.55 mmol/min/kPa / 5.20 mmol/min/kPa

    DLCOc 7.55 mmol/min/kPa / 5.04 mmol/min/kPa

    FRC 2.64L/2.40L

    RV 1.81L/1.53L

    pH 7.40/7.43

    a.CO2 partial pressure 38.03 mmHg/40.40 mmHg

    a.O2 partial pressure 77.93 mmHg/79.90 mmHg

    a.O2 saturation 98%/97.30%

  • Is there anyone who can shed light on my lung function tests. I am not asking for medical advice, I am only asking if someone else interprets the results the same way that I do.

  • Try the helpline - 03000 030 555. Available if you are in the UK. Mon- Fri during office hours.

  • I am working in continental Europe, only in the UK at the weekends.

    The Dr letter states middle grad restriktive ventilation disturbance without central obstruction plus middle grad gas exchange dysfunction. However, no concrete diagnosis, only these observations.

  • Perhaps try ringing the doctor to ask for clarification as it would be unsafe to rely on a layman's interpretation.

  • I did. I asked him directly if I have any other lung disease apart from my mixed form asthma, which incidentally is stable at the moment. He took a deep breath, long pause then unconfidently said no.

  • Yes, I saw that. But if you still have questions he is the only one who can answer them with any degree of certainty as he has all of your test results. Good luck with it.

  • I phoned his secretary and asked if the dr could phone me to clarify the outcome of my lung function test results.

    The bottom line is that he thinks I have IPF from a rheumatic cause. When I asked why he didn't tell me, he said that I would need a high resolution CT scan to confirm the diagnosis and he felt that the exposure to radiation would out way the benefits of telling me his suspicions as my moderate restrictive lung condition had not altered in the past 12 months. I am very angry! It is my body and I make it very clear that I want to know what's going on with it. He was concerned that it would cause me anxiety ... I already have heart failure, is there a higher level of anxiety with other terminal illnesses? In my case it is now a question of which one gets me first.

    Now I have lost trust in this professor, I thought I was dealing with the best (I have no concerns about his knowledge base) but now I realise that I am just a number. Sparing the CT scan costs in my opinion has nothing to do with sparing me anxiety. I was already anxious reading the results and being told that I didn't have any other lung disease other than asthma.

    My blood is boiling,,,

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