Pulmonary fibrosis diagnosis today

Hello all, I hope this is an OK post for this forum, apologies and please delete it if not. Today I took my 80 year old mother for an appointment at the hospital to get the results of here recent lung performance tests and scans. The doctor said she has COPD and Pulmonary Fibrosis and her lung function has deteriorated a lot since she was last tested in 2015. They plan to manage her ongoing chest infections with the current mix of medications. (Steroids, inhalers and antibiotics when needed.) They will do further tests to see what more they can find about the pulmonary fibrosis. I left thinking this pulmonary fibrosis is a manageable condition but it seems from reading on the internet that it will progress and ultimately she will need nursing care. I don't want her to be worried unnecessarily but I don't feel we were told what this diagnosis actually means for her prognosis. Can anyone tell me broadly what to expect? I don't know how to plan to care for her.

Thank you

8 Replies

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  • There are several members here with PF. I am sure they will respond with their experience and advice. You are absolutely in the right forum. There are also some more specialised sites for PF. But this one is wonderfully helpful and supportive. You will have nothing but care, concern, information and good advice.

    All the best

    K x

  • Hi jasm, Welcome to our community. I am sorry to hear that your mother has COPD and Pulmonary Fibrosis.

    Pulmonary Fibrosis can be managed to a certain extent depending what has caused it and various treatments are available to slow its progression. COPD and Pulmonary Fibrosis affect people in different ways. You say they still have further tests to do and once they are completed they will have a better idea of the best treatment for your mother. They will also be able to advize you of any help you can give your mother as well.

    I have Emphysema and Pulmonary Fibrosis and manage to do most things although a lot slower. It is important to take precautions to prevent chest infections as much as you can and if you do get an infection get treatment for it as soon as possible before it gets a good hold. I take a long term antibiotic (Azithromycin 3 times a week) which I have found very beneficial in helping prevent infections.

    I hope your mothers chest infection clears up and she starts feeling better soon.

    John.

  • Good advice.

  • Thanks so much John. The antibiotic you're on is the one my mum is starting tomorrow. 1 on Mon, Weds and Friday. Further tests will be done at Brompton hospital. I truly appreciate this positive response and I hope your health stays steady. Kind regards.

  • You're welcome. Please feel free to pop on anytime if you have any questions. There is usually someone here that will be able to help.

    Thank You for your kind regards.

    Take care.

  • I also have pulmonary fibrosis (and consequently pulmonary hypertension) but I haven't been prescribed antibiotics, except a rescue pack if I get a chest infection. How do I know if I've got a chest infection? I have no fever, no productive cough, and no more aches and pains than severe back pain which has kept me indoors since Xmas. Either I'm very lucky, i.e. No infection since I was diagnosed 18 months ago, or I'm living in a fools paradise. I really don't want to be on antibiotics permanently, but maybe I should be. What do you all think?

    Wishing you all well. I'm filled with admiration for all you lupus sufferers, it sounds like a truly awful disease, that you all cope with in strength and resolve.

  • It can sometimes be hard to know whether you have a chest infection or not, Phyll. Usually the symptoms are, raised temperature, increase in sputum, change in colour of sputum, coughing and generally feeling unwell. But some people don't cough up sputum, which makes it more difficult to decide whether or not you have an infection. If you are in doubt it would probably be best to contact your doctor. At the surgery or at outpatients, a blood test can be done which would show if there's an increase in your white blood cells. An increase in white cells means your body is trying to fight an infection, so that test is very valuable for diagnosis. Always best to check with your doctor or nurse when in doubt.

  • Hi I'm so sorry to hear about your mum. With PF/IPF the Dr's themselves don't know how it will progress- the pathological pattern can change - I'm 54 & awaiting to see if I'm being accepted for lung transplant.

    1. Your mum should be seen by an ILD specialist.

    2. I don't know what stage your mum is at with tests but it really takes a CT scan to diagnose PF.

    3. If they know why she has PF i.e. A connective tissue disease, autoimmune disease, vascular disease etc. It can be easier to treat at source & therefore slow the Fibrosis down.

    If I can help in any way please send me a PM.

    Elaine

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