I. L. D

[makemepainfree]

Can anyone give information on lung disease. Iam 60yr female never smoked and been diagnosed with I. LD. Is there anything that can be done for this. I have pain in my left lung. I am very breathles as when i go up staurs.

[Alberta56]

Sorry I can't help you, but there have been plenty of posts in the past about ILD. You may find something in the pinned posts on the right. Alternatively phone the helpline (number above) and ask for advice. Best wishes.

[Patk1 in reply to Alberta56]

0300 222 5800

[makemepainfree in reply to Alberta56]

Thank you Alberta

[makemepainfree in reply to Alberta56]

Thank you for your time

[Ern007]

I have scars on lung, but really can't help, there are so many reasons why we get Fibrosis. Pat 1 has left a helpline phone number below, they are qualified to help. hope you get sorted.

[makemepainfree in reply to Ern007]

Thank you

[makemepainfree]

Thank you for phone number i also had the test when you go into a cubicle and they measure your lung capacity and he said it was remarkably good does not make sense with what showed up on c.t.I see consultant in sept

[pasquino in reply to makemepainfree]

Hi

Had the same problem , decent lung function but breathless.

After several private consultation finally they discovered that was a matter of pulmunary hypertension , due to reduced heart funcion (age related) and circulatory problems.

I suggest to speak with your consultant and see all the option , of course taking in account the very long waiting time of NHS.

My suggestionis to rely on private for diagnosis (cheapest but speeder response-il London you can arrange an appointment in a week time) and then stick on NHS for cardiology tests (very expensive cardiac catheterization and echocardiography), slower response but free.

Pasquino

[Ern007 in reply to makemepainfree]

Hi makemepainfree,

You say you had test for lung/function capacity in a cubicle. What do you mean by cubicle.

Reason I ask was about 1991 when I went to chest clinick at the hospital I had that twice, if yours was the same I had.

The cubicle was a cockpit heated at a constant 80degrees, Varius teats done, dr communicated via a micraphone, Last test was it seemed like I had to blow with my mouth op to a solid brick wall, it felt like you was trying to breath, but was getting nowhere, obviously the doctors were getting a reading, Is this the same procedure you was describing, has any one of the old COPD guys/gals had the cockpit test.?

[makemepainfree in reply to Ern007]

It was breathing into a tube and technician had a display of my breathing had to breath in and out several times. Tgen in cubicle to do similar then air was turned off a sec so they were reading lung capacity results would be sent to consultant

[Ern007 in reply to makemepainfree]

Thank you, sounds the same idea, but I was in what looked like a plane cockpit.

[Caspiana]

Hello there I have inflammatory lung disease in my left lung. From reading your profile I see you have fibrosis in your left lung . Are you seeing a lung consultant? There really isn't enough information in your post as to what kind of help or questions you have but I see Pat has given you the helpline number. I hope they can give you some advice. 🌿

[makemepainfree]

I just woundered what can be done about it if anything. Yes i have a consultant i go back to in September. Is there any questions i should be asking

[Blyth1 in reply to makemepainfree]

Hi, I to am a non smoker with an ILD diagnosis. I always get annoyed when people / Drs presume I am!

As for ILD, well it is a bit of a blanket term which I am sure you know that covers many different types of lung function problems. Mine is Hypersensitivity Pneumonitis which has only started fibrosing in the last 2 years. Both lungs. Initially I was on Prednisolone of varying doses and that was very helpful from the breathlessness point. Not so good on the weight gain🤣 I am now on Mycophenolate to try and slow the fibrosis.

Ok my advice: try to see a specialist who deals specifically with ILD, not a general Respiratory consultant. Ask about pulmonary rehabilitation classes and join a course. Stay active, in whatever way suits you, me I started playing bowls. Ask if anti- fibrotic drugs would be beneficial to you and your diagnosis. Find a local Pulmonary Fibrosis support group and go along. There are people there who are travelling the same road and full of great advice. Most of all don’t think you are alone , pace your every day living to suit you and come on here to ask questions . Take care X

[Tawny10 in reply to Blyth1]

This is all good advice I agree

[cazza34 in reply to Blyth1]

Hello Blyth1 Does Mycophenolate slow fibrosis? I was told it is to reduce inflammation. I was given Nintedanib for this purpose. Please go back and ask for Nintedanib if you have fibrosis.

[Blyth1 in reply to cazza34]

You are right cazza34 Mycophenolate is to try and further reduce the inflammation. Nintedanib is on the one I discussed at my appointments last Wednesday. X

[makemepainfree in reply to Blyth1]

Thank you so mu h for your info

[makemepainfree in reply to Blyth1]

Thank you so much for lots of helpful information.

[Mavary]

hi I’ve got interstitial scarring but have been assured by the Consultant it’s not Pulmonary Fibrosis.

[HeartMe]

You mentioned being short of breath. I would recommend getting an oximeter that measures your oxygen levels. It should stay at 90+. If lower, you require oxygen supplementation and low oxygen puts you at high risk for other serious oxygen problems including stroke. Very important to know. You seem to be at the beginning of your journey for possibly knowing what is causing your ILD. Knowing this affects the treatment needed for your type. I have hypersensitivity pneumonitis (caused by an antigen in the environment which can be known or unknown). My antigen is unknown after blood tests and surgical lung biopsy. If your antigen is known and can be eliminated from your environment, your fibrosis may stop progressing. It’s critical to find a pulmonologist that specializes in ILD to get proper testing. It’s often not possible to get a definitive diagnosis from just antigen testing, CT scans, PFTs, etc. I take the antifibrotic, Ofev, to help slow the fibrosis. There is one other antifibrotic available as well. Most people are eligible for subsidies to pay for these medications in the U.S.. I did take Mycophenolate for the inflammation for quite some time but had side effects of CMV colitis and Mycophenolate related colitis (lost 30 lbs. before this was figured out). Apparently this side effect is not uncommon but had diarrhea for over a year before determined. There is a lot to learn, so if you can use the phone resource I saw posted here to help sort things, sounds like a good place to start. Pulmonary rehab or exercise is key to helping maintain best lung function. I didn’t really get this until recently, although it does seem like good sense. It’s one thing I wish I had done way sooner. Good luck with getting the best care and diagnosis.

[makemepainfree in reply to HeartMe]

Thank you so much for your helpful information. Yes iam at the start was after 2 ct scans and bloods done was told aug 2023 i had I. L. D

May your health be with you.. ❤️‍🩹