Abnormal PFT/Subclinical ILD | Lupus Forums at The Lupus Site
  1. As you can see we have transferred to new forum software which is much more stable and will eliminate problems that we had with the old software.
    *** To login you will all need to reset your passwords. To do this simply click login (top right) then click the forgot password link. You will receive an email with a link to reset your password. You can then use the forums as normal.
    Dismiss Notice

Abnormal PFT/Subclinical ILD

Discussion in 'Tests and Procedures' started by Mmouse, Feb 5, 2019.

  1. Mmouse

    Mmouse Member

    so I was told that I had Subclinical ILD with abnormal PFT , scattered air trapping, wheezing, failed 6 min walk test with declining DLCO a year ago. The Pulmonary Doctor does not know what he wants me diagnosed as. My question, what are the test used for? Please explain what lung parenchemal (sp)is , ground glass opacities, air trapping with restrictive disease, decreased o2 on 6 min walk test. The echo actually came out great but confused with diagnoses of possible lung disease. Should I get second opinion?
     
  2. keebler

    keebler Moderator

    Im sorry I can't help you. I know there is someone who can help you.
    Hopefully she will come along and reply.
    So I bumping this so everyone will see it.
    Take care,
    Lyn
     
  3. x_claire_x

    x_claire_x Moderator

    Hi... can you remind me if you have been diagnosed with a connective tissue disease ? It seems that a lot of people with MCTD and the like, carry an element of lung damage; it terrified me when I was diagnosed with Pulmonary Fibrosis years ago and the respiratory consultant told me that had I been a previously well member of the public with those lung function tests and CTs he would expect my life to be significantly shortened; but that in the cases of secondary probs with an autoimmune disease he had relatively recently been educated to understand that is not the case for these patients.

    It is good news that your heart doesn't seem to be implicated, it does however beg the question that your disease process is under control. The other thing during this journey, firstly I was told it could never repair.... which I would understand, only to find that it has got better...then worse etc etc. Also in my case I think histamine plays a role in all of this, funnily enough seeing my lung man today so it is one of the many questions (as always !) that I have....so will report back.

    Did your Rheumy refer you to this particular consultant ? They need to work together to assess your disease activity etc and the impact it is having on your lungs. How often are you tested LFTs? should be 6 mthly at the moment...though I always have to fight to get mine done ! I am lucky to have found a Dr with no personality (!) but a special interest in autoimmune diseases on the Pulmonary system...find him very hard to communicate with though so I have to go in prepared, with all that I need to say written down....which is unlike me , I am usually quite able to communicate with the Drs. Hope you can find some answers, I hope you are able to contact your Rheumy and ask him for further clarification...…………...take care, Claire
     
  4. Lori ODonnell

    Lori ODonnell New Member


    Hello. I have an abnormal PFT for every PFT test since 2008. I having the "broken glass" looking tissue in the lungs reported after a CT scan and X Ray. This is scar tissue in the lungs. I also have pulmonary fibrosis, meaning the outside of my Aveoli sacs are hardening and not allowing O2 to be exchanged as it should. When I walk, my O2 drops fast and has been at 40% on bad days. I have been diagnosed with Lupus Lung disease. I have O2 at my house in case. I have had Lupus for 14 yrs and Lung issues for 10. Lupus chooses an organ to attack when having flares and mine is my lungs. I have to go for a PFT every 3 months with blood work and a CT scan. My echo was normal as well. They did a right heart cath 4 yrs ago to rule out hypertension causing shortness of breath. I have had the bronchial scope done twice and a lung biopsy in 2017 to confirm intertestital tissue disease. I am now on full disability. This allows me to have a better quality of life and not be so worn out after work. My dog is happier.
    Hope this helps.

    Lori
     
  5. Lori ODonnell

    Lori ODonnell New Member

    Also, You may want to take your test results to a more experienced rheumatologist as they haven't "diagnosed" you but let you leave with more questions then answers. Rheumatologist are hard to find sometimes.
     
  6. Mmouse

    Mmouse Member

    Thanks to everyone for sharing! Knowledge is power and we need much knowledge to battle these diseases.

    To answer your question Claire, I was told that I tested positive for Hashimotos in 2006 and Lupus in 2008, but was never symptomatic. The symptoms started manifesting in 2011 and tests came back very low positive so I am diagnosed presently as Undifferentiated connective tissue disease and most recently also RA. I am currently taking, Hydroxychloriquine, Imuran, cyclobenzaprine, vitamin D 50,000 units, on and off Prednisone and Losartan. About 2015 I started becoming winded and short of breath so a PFT was ordered and was diagnosed with restrictive disease. I am overweight so it was stated that the weight was the cause of the abnormal PFT. The breathing turned into wheezing and SOB upon exertion. The CT and ECHO was ordered. The ECHO revealed a very stable heart with no abnormalities. The CT showed air trapping, this was thought to be asthma. To make a long story short, the walk test became increasingly abnormal which led the doc to order o2 to be used at night with sleep and upon exertion when walking. The CT was seen to have ground glass opacities and more air trapping. The doc never explains anything but in his notes he has Subclinical ILD, I noticed lung parenchemal (not sure what this means). Also noted adrenal nodule, kidney stone, a lung nodule and tracheabronchomalacia. I never heard of tracheabronchomalacia. So, anything or info you can provide me would be appreciated and will minimize my stress level. Thank you! The testing is done annually.
    Mmouse
     
  7. lazylegs

    lazylegs Moderator

    I was interested in the tracheabronchomalacia so looked it up. It appears the walls of your trachea and or bronchi are weak. The walls narrow causing shortness of breath. The oxygen the doctor ordered will help force the walls open so you will have fewer symptoms when you do walk or exert yourself.

    The lung parenchymal has to do with the lung scarring. Lupus or RA could be a couple of possible causes.

    My rule of thumb is not to be too worried unless the doctor's office contacts me to come in. A 6 month or yearly check makes me relax. The doctor knows the problem is there and we are doing what we can to mitigate it but it is not an emergency situation.

    Take care,
    Lazylegs
     
  8. Mmouse

    Mmouse Member

    Again, thanks to all for your help!

    I wear the O2 at home but the regular O2 unit dries out my nose. My unit that I can take on the run does not dry my nose out so much so I use that at home too but the battery has to be charged constantly.

    Anyway, as far as the tracheabronchomalacia (such a long word), how is this caused? It can't be genetic because no one in my family has ever heard of it. I'm not sure about an autoimmune component either, as I have tried to find out info and there's not a lot out there. Where did you find your information Lazylegs? Thanks for the advice about not being too worried unless the doc calls you in. I guess I need to work on not focusing too much on my health, the stress alone can harm you.
    Mmouse
     
  9. lazylegs

    lazylegs Moderator

Share This Page