Just diagnosed with mild to moderate interstitial lung desease

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My husband had pneumonia 2 times within 3 wks and hospitalized for them.  He is now home and was on Levequen again for the past 7 days & still on predisone for another 2 weeks. Had extensive blood work, x-rays, scans and will have another scan in 2 wks and see his pulmonary dr.  Other than this ha has been very healthy (71 yr old male)

This is the breakdown so far:

1 Concomitant bilateral upper lobe & right middle lobe pneumonia peripherally.

2 9.6 mm nodule at the periphery of the right upper lobe & 7mm nodule in the left upper lobe at the cardiopherenic angle

3 mildly prominent mediastinal lymp nodes possible reactive.

I think the dr wants to do a biopsy.  I amd not sure what all of this means but I know from our talk with the doctor it does not sound good.  Can anyone out there suggest anythin or what this all means?  I want to learn as much as I can to deal and help him fight this desease.

Thank  you all so much in advance!

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11 Replies

  • Posted

    Hi Weamie

    Sounds to me as his mild to moderate interstitial lung desease COULD BE an IPF (Idiopathic Pulmonary Fibrosis) which is what I have. If it were in your shoes I would ask for a second oppinion. Has he had a CT Scan done and if so what were the results of this?

    Can't advise at this stage - sorry!

    Kind regards

    Jazztrain

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    • Posted

      I agree with you, from what I am reading it sounds like IPF.  Yes, he has had 2 CT Scans at each hospital visit and another is due in 2 weeks and then a follow up at the drs.  i have a hard time reading the results but I do have them. Can youtell me what specific I should look for?  I found the part of the lobes as I have stated above but what else should I see?

      Thanks again

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    • Posted

      Hello Jazztrain, my husband had his follow up cat scan this week and here is what the reprt said:

      No mediastinal or hilar lymphadenopathy

      No pneumothorax, No pleural

      There has been significant interval improvement of the previously demonstrated interstitual & alveolar airspace disease in the upper lobes & the right middle lobe

      Also it says significant inerval improvement of the previously demonstrated bilateral airspace disease, probably reflecting improving infectious

      My questions are...Sounds like the pneumonia is gone? & What do you think happened to the 9.6mm nodule & the7mm nodule? Are they still there you think? Are they large enough to be important?

      Thanks again

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    • Posted

      Hi Weamie

      Your question - My questions are...Sounds like the pneumonia is gone? & What do you think happened to the 9.6mm nodule & the7mm nodule? Are they still there you think? Are they large enough to be important?

      It for your GP to give you an answer as I know nothing about them?

      Sorry - Jazztrain

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  • Posted

    Hi weamie

    IF IPF has been confirmed; your husband doed NOT need to have a Biopsy. While I am not a doctor - I would suspect from what you say he does have an IPF and needs to be referred to a specialist hospital for treatment - possible the use of a drug called 'Pirfenidone'!

    Hope this helps.

    Kind regards

    Jazztrain

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    • Posted

      This sounds like it will be a long ride!  My daughter was just diagnosed with a muscle disease and it has been a roller coaster with all the doctors and hospitals and tests and we are so fraustrated with everything.  We can't get to the name of the muscle disease!

      Now it sounds like this could be the same.  I guess I have a few questions, when "they say"  you have IPF, is it true you have 3-5 years?  Do you know anything about the lobes & nodes?  Crazy question...are lobes & nodes the same?

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  • Posted

    Hi weamie

    I am 72 and was diagnosed in 2012 AND yes the normal range is 3 - 5 years; however when I first went on the drug 'Pirfenidone' my FEV was down to 56% yet on my last visit to Papworth Hospital in March this increased to 63% so for me the drug which costs the NHS £500 per week is working!

    Lungs will take on an appearance of being 'honeycombed' this because the little air sacs at the base of the lungs die but this medication helps to slow the progression of the disease - does he have a dry cough! I have a very productive mucous cough and have been prescribed 'Mucodyne' Syrup works much faster than the tablets (and after a bottle 300ml) I have started to get rid of the mucous down the toilet OR through the nose using a hankerchief! But have to return to Papworth every three months.

    There are a few rules which have to be applied these are as follows:

    1. Stop smoking is a MUST!

    2. Keep away from second-hand cigarette smoke.

    3. Alcohol to be limited to just13 units per week.

    Apart from that Eat - Drink and Sleep as normal.

    Kind regards

    Jazztrain

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    • Posted

      He too is 71, does not smoke and no sceond hand smoke.  Does not have a dry cough but coughs up clear mucus now (was green & brown last wek when the pnemonia was still there (maybe still is) He is still on predisone steroid pills for 2 more weeks then he has to have another lung scan to compare it to the one he had 3 weeks ago.  I'm sorry to ask but what is FEV?  I am still new to all this ; (
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  • Posted

    Hi weamie

    FEV is the amount of oxygen one can get in their lungs when breathing in and holding their breath. It is measured by a machine at a specialist hospital.

    Until your husband has had his next CT scan and seen the Doctors I don't think I can be of further help at this stage but let me know how he gets on please.

    As to smoking I can understand but how much alcohol does he drink weekly as this will havve a bearing on IPF if he has it?

    Kind regards

    Jazztrain

     

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  • Posted

    Hi 

    I am 63 and last year I was also diagonosed with ILD.

    They said it could be hypersensitive pneumanitis or IPF.

    In the early stage they all look alike I believe. They told me to go for VATS biopsy. Though it is minimally invasive I felt it is too much to go through.I do have dry cough but not too much.

     I play tennis regularly and try to do some breathing exercise.i do go out of breath very  easily.

    Now the doctors are thinking it is more like HP then IPF.

    i am not taking any medication now . 

    Hopefully it is not IPF for your husband.

    chitra

     

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  • Posted

    Hi,

    Why dont you consult with expert pulmonologist.

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