So frustrated I can't seem to get this question answered. Please help me.

[Richgirl]

I would like to know. My x ray said most likely ILD. Does that automatically mean if I have ILD that I have pulmonary fibrosis?

[gaymamma]

I wish I could help more but I think that really is a question for a doctor lovely...

Strength to you

N x

[Richgirl in reply to gaymamma]

Yes your right. I just go crazy playing "the waiting game". Thank u & Blessings to u😊

[ShellyC23]

Not as far as I know. I've asked that question myself and been told that. All I know is that I was told a couple of years ago that I had ILD but the 'experts' are no closer to narrowing down an exact diagnosis as the term ILD covers numerous lung conditions. I guess you are likely to have more investigations which may be able to pinpoint the cause and maybe treatment. However in my case they drew a blank so all they can do it repeat scans and lung function tests once a year and see what happens. I try not to think about it too much but sometimes when I get out of breath really easily I do worry about the future. Hope you see your consultant soon

[Richgirl in reply to ShellyC23]

Thank u shelly C23, we all play the waiting game. Learning how to stay busy while I wait is the key. Lots of health & good wishes to u too.

[Loraine121]

Hi rich girl, I have been reading your post , I don't think that it does mean that but you consultant shold be able to help depends on how well you get on some are really good other just do the basics , I to have Ild im on trial medication as I have asthma as well and not fit for byopsi now on home oxygen therapy,

But if you are getting tests and infestations hopefully you will get some answers quickly, all the best.

Loraine x

[Richgirl in reply to Loraine121]

Thank u Lorraine 121, it's hard waiting for answers. Mon I go in to have my cat scan read to me. I'm a very young at heart 62 year old. I just want my health to be ok. I know we all want that. I hope all will be great health for you too. God bless you & everyone here. Rich girl.

[Loraine121]

We will be think of you , let us know how you get on with ct scan results, hopefully that will put your mind at rest and get you on medication that works for you.

Take care

Loraine x

[Richgirl in reply to Loraine121]

Thank u very much Lorraine. I will keep everyone posted as I feel that we r all here to learn & everything we post could help others. ❤️

[Lesley_ann]

Hi richgirl,

As you are on the NRSA site I'm assuming you already have some arthritis based illness? As Shelley said ILD covers a vast amount of lung diseases and the main way to diagnose is through a CT scan.

I was diagnosed in September 2015 with pulmonary fibrosis. As you were asking if ILD meant that you have pulmonary fibrosis, I can only explain why I have PF and not ILD . My lung function tests and my symptoms showed that I had ILD in September I was then refered for a CT scan which confirmed that I have PF. That means the consultant knows the cause of my lung disease unlike being diagnosed with ILD.

I have pulmonary fibrosis caused by rheumatoid nodules ( I was diagnosed with rheumatoid arthritis in 2002 ) in my lungs. Which has resulted in scaring tissue,a thickening in my lungs and a build up of fluid. Like many others I was in complete denial for the first 6 or so month's but, now the majority of time I accept it even though I'm still really angry with how it as slowed me down and completely changed my life. I am the kind of person that needs to know as much as possible about anything that affects me as, I think that I deal with things better.

Definitely talk this through with the person you are seeing on Monday as they are your first port of call to explain thing's. One thing I will say is PF caused by rheumatoid arthritis is very rare, and after 18 months I am still not sure which is worst knowing what you're lung disease is caused by or having ILD . Try to make sure you have all your questions wrote down so that you don't forget what you want to ask

All my best wishes for Monday,take care and let us know how you get on. Linda x

[Richgirl in reply to Lesley_ann]

Thank you for all your valuable information. That helps me to understand a lot more. I'm sorry to hear u have pulmonary fibrosis. I don't know if u know who Jerry Lewis is. He's a comedian & actor. He has had Pulmonary Fibrosis for years now & is in his 80s still acting. I'm glad u reminded me to take notes tomorrow. I'm gathering up my tablet & pen. I'll keep posted. Best wishes to u.

[Lesley_ann]

Yes I do know jerry Lewis, you and Iare from the same era born in the 50s. Good luck for tomorrow linda x

[Richgirl in reply to Lesley_ann]

😊 thanks, Linda

[nomoreheels]

Like inflammatory disease is an umbrella term for many conditions so is Pulmonary Fibrosis. It covers any conditions that can cause scarring of the tissues of the lungs. Pulmonary Fibrosis is a type of ILD.

Try to resist scouring the internet for answers before you get your results. When we only know bits of a story it's all too easy to believe we've got this or that's going to happen. Best to wait until your specialist has the results from both your x Ray & CT scan the he can explain properly & you can ask as many questions as you want & hopefully he can answer them.

[Richgirl in reply to nomoreheels]

Yes that's very good advise. I however have already searched up & down & all around. I just couldn't stop. But yes it does drive u crazy. Thanks😁

[mary65]

I received a letter from my rheumatologist last Saturday to inform me that the scan result shows I have pulmonary fibrosis which maybe a result of having RA and sjrogens.I live alone don't have an appointment with her until June and don't think a letter is the right way to break this news.She said she is referring me to chest service.

[Richgirl in reply to mary65]

Hello Mary, Yes u are right that telling u this in a letter is very insensitive. The doctor should have talked with u in person so that u could ask questions & understand everything. Now having to wait until June is awful. What horrible bedside manners! If you don't have a good connection with this doctor anyway I'd change doctors in a heart beat just for that reason alone. U need a compassionate doctor. There's so many great ones out there. However It is possible that the office people sent the letter out & that the doctor didn't even know the letter was sent. Sometimes it's automatically done this way. Write to me anytime Just to talk & I'll be hear for you. There are wonderful people on this site that will be here for you too. Know that your not alone. We all have each other. Stay in touch. Richgirl🌻