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41 diagnose with pulmonary fibrosis

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fab123
fab123

Hello I am 41 years Old, i went lask week to the ER for some pain in my lower body, thinking maybe were my ovaries, they thought could be apendicitis, but nothing there, the Dr make a CT scan, and saw something in my lungs, prescribe me some antibiotics and medicine for my sinus, nothing really bother me with my sinus or my astma, but i have had short breath for a while and back pain, two days after i get a call, and they ask me for another scan, the ER doctor said is Pulmonary fibrosis, I will see a neumologist soon, I am afraid, all I read is really bad, we were planning to adopt a kid, we just finish the renovations in my craft room, i have pain right now, my back hurts a lot, my question is, does some of you are still working or i will have to stay at home, i mean yesterday i went to work, but the back pain is getting worse and worse, thank you for reading

0 likes, 3 replies

3 Replies

  • carol03258
    carol03258 fab123

    Posted

    Hi, sorry to hear you are in pain.  I don't think the lung issue has anything to do with the back pain.  I think you should pursue that separately.  With regards to the Pulmonary Fibrosis, you will have to wait and see what the neumologist advises, but I am surprised you have not been referred to a respiratory specialist.  I was diagnosed with NSIP 8 years ago and have been working full time.  I am starting to find it more difficult now, but have no intention of cutting my hours or retiring yet.  

    Keep positive while you wait for more information. 

  • epictetus1939
    epictetus1939 fab123

    Posted

    Hi Carol

    Sorry to hear about your problems.   I dont know if this is going to help but i have had IPF for probably 4 years but it has only been diagnosed 4 months ago.  I have started on a new drug called Nintedanib which normally slows down the progression by at least 50%.   I have no pain and only get breathless on medium exercise.e.g. going up 50 steps fairly fast. I am 77.

    When you see the pulmologist I recommend you ask for the numbers for:

    1:  FVC  which is a measure of lung volume and compared with the average.  Mine is 105%.  My pulmologist herself is 78%. So not a very good measure in my opinion.

    2. Oxygen saturation which is a measure of how much oxygen is in your blood.   mine is 98% which is normal.

    3.  TLCOc  or "gas transfer"  which is a measure of how the lung exchanges oxygen and carbon dioxide with the blood.  Mine is 64% which is well below normal.  This is my main worry and I will be watching this regularly.

    You can also ask if your CT scan shows "honeycomb cells".  I dont have them but they are a fairly sure sign of IPF.

    I also have "Acid reflux" which is thought to be related to IPF.  it has given me a lot of pain and coughing and sinus problems but has almost completely cleared up since taking lansoprazole which is an over the counter drug. 

    In summary...IPF is not easily diagnosed and there are many flavours of it so please dont despair but dont give up on getting your other symptoms treated.

     And dont give up on your plans.  Every good wish...brian.

     

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