Pulmonary Fibrosis

[Photolady]

I have just been diagnosted with pf. My lungs are at 60% capacity. My oxygen is usually between 92 and 96. Is that normal to have oxygen that high with pf. I guess I am in denial about the diagnosis.

[jenss]

Hi Photolady, good to hear from you again. Pulmonary fibrosis just means that you have scarring in your lungs and this scarring is typically identified by CT scan or lung tissue biopsy. It does not make a direct statement as to the functioning of your lungs, so yes you can have scarring and your oxygen levels are not affected (healthy lungs have a lot of "spare" capacity and quite a bit of tissue has to be destroyed before a drop in function is noticed). Did the specialist let you know what type of pulmonary fibrosis you have? Have you been referred to a centre of excellence for ILD? What sort of treatment has been suggested to you? Are they doing more tests? You may want to give the BLF helpline a call to discuss some of your concerns and questions. Best wishesxxx

[Photolady in reply to jenss]

I am seeing a pulmonologist. They have done breathing test and ct scan and blood test. They are just calling it post inflammatory pf

[jenss in reply to Photolady]

Hi, that is good and hopefully the inflammation can be stopped. Are they giving you steroids? The area of ILD is very complex and most pulmonologists are not up to date with the current research as ILD (including PF)is a relatively rare condition. This is why it is recommended that those with ILD should be seen at one of the expert centres (at least once to confirm what the pulmo is thinking about what disease or treatment is needed). Best wishesxxx

[Photolady in reply to jenss]

They haven't started treatment yet

[cofdrop-UK]

Welcome Photolady although I am sorry to hear you have PF. I have different lung conditions but some of our family here do have PF and will hopefully post soon.

love cx

[Photolady in reply to cofdrop-UK]

Thank you!

[Hidden]

Hi I am so sorry you have had this diagnosis. But at least you are now diagnosed and know what you are fighting. Stay strong and positive. x

[Photolady]

Thank you!

[Offcut]

I have RLD and PF have similar issues you are processing well at rest but I take it you are out of breath quickly on movement/exercise? I can see higher levels of 96% and then go up stairs and I can be 78% to 88%. You can also give a good peak flow as the lungs have lost the elasticity so they blow out with more power but empty the lungs.

I have this discussion with my GP's as they will always pop the finger meter on me near the end of our meeting so I am rested but forget that the peak flow is of no use to me other than a benchmark number. I blow 350 on a good day. The PH does not help me either.

But forget all those numbers if you feel OK live with that feeling and try not to get bogged down in the condition.

copd.about.com/od/copdbasic...

Be Well

[Kookie85]

I to have pulmonary fibrosis , as well as Bronchiostasis ,C.O.P,D ,top left lobe has been removed . I didn't know there was different types of Pulmonary Fibrosis will have to find out which one from my specialist . I to have stats at 95 96 ,which can be confusing as health professionals look at that and think your o.k . I know it's a good thing as oxygen is getting in.

[MarieW-F]

I have PF caused by scarring from sarcoidosis and bronchiectasis and my oxygen at rest is anything between 94 and 98. The issues arise on exertion and what they drop to when walking etc. Write down any questions you have when you see your pulmonologist - its always easy to forget what you want to ask when you are in that room with them. Good luck

M

[Baily]

Hi Photolady, I am of no help to you....... sorry... my oxygen levels are always good but only have 50 percent of lung usage, it,s been ten yrs. now and I am no further on at understanding this disease , I am constantly losing my voice, by evening I am finished so no more dancing for me. At Dr. Today and they are now looking at the fact it could be a muscle problem" will keep you all posted.. I think Jess gave you excellent advice.

Keep positive and really enjoy the good times to heck with the cost....😧😀 ☺️

[tgcieri]

Hi,

My husband and I both have pulmonary fibrosis. His is from years of working with asbestos (without a mask) mine is from Sarcoidosis. Your goal is to keep your oxygen level above 90. Try to stay away from perfumes, wear a mask if you are painting or doing anything around the house with "odors." Make sure you have an emergency inhaler (puffer) if you get winded. My husband's oxygen level easily drops as low as 50 if he doesn't use his oxygen! (Heart attack time). Get a a good pulmonary specialist and listen to what he suggests to you. You can have a wonderful pretty much normal life if you think of you first and if necessary....walk out of a room if others are wearing perfume. Good luck to you!

[Photolady in reply to tgcieri]

Thank you!