I'm new at this & not at all computer savvy. So if I don't get back or don't get back right away chances r I'm trying to figure it out.

[Richgirl]

I hope everyone is enjoying the weather or that your staying warm. I guess that would depend as to where your located. I'm in Santa Barbara so this week it's nice. About 72 degrees. This is my story. In 2007 I had Brest cancer. Then while on chemo I got a lung infection in my left lung. Diagnosed as M.A.C. It's a long name but can be looked up as to what it is. To have that clear up I had to go on antibiotics for almost 3 years. Hmm that couldn't have been very good for me. But anyway. The breast cancer is gone. The MAC is gone. But in 2010 I was diagnosed with Rheumatoid Arthritis. Now because of the RA I'm in a wheel chair. I've had food allergies for awhile. Causing congestion in my chest. I went in & had a x ray. The report said most likely ILD. So now I'm waiting for a cat scan. Can the Radiologist be wrong in saying that I most likely have ILD? Plus if soneone has ILD does that mean they have pulmonary fibrosis?? I know nothing. Have tried to find that answer onthe net. All The net has done is scared me. Well, I wish u all a healthy, happy year. Hope to here from someone.

[helixhelix]

Pulmonary fibrosis is the umbrella name, and ILD is the more specific type. So it's like you've been given a fruit (pulmonary fibrosis) and the specific one you have is a banana.

But these are just the categories and for each one you can have a mild or severe type. The radiologist is just pointing out a possibility, and although unlikely to be completely wrong it doesn't tell you how severe or widespread it is. Sometimes they are just another irritating thing to live with, other times it's more serious.

But don't scare yourself with stories from the net, you do need to discuss your precise diagnosis with your doctors so you know what to do and how to manage it. Good luck - it sounds like the last thing you need!

[Richgirl in reply to helixhelix]

Let's see if I understand this correctly. ILD is some sort of pulmonary fibrosis?

[helixhelix in reply to Richgirl]

I think I must still be asleep! It's the other way round! Very sorry! Got my fruit bowl muddled up!

So interstitial lung disease is the terms for a wide, wide range of lung diseases where the common characteristic is that attacks specific bit of the lungs. And it can end up as pulmonary fibrosis. HAving an auto-immune diseases like RA does increase your risk of ILD.

[Richgirl in reply to helixhelix]

That's ok. When I'm awake I'm asleep anyway, ha. so then I can have ILD but it doesn't mean it's fibrosis. That gives me hope. Thank u. Yeah it's hard. You never know where life is going to carry you. I wish u the best of health too. 😊

[Ali_H]

Hi,

You might also like to tap into Creaky Joints which is a America web/support group which may have a local group in your area that you can tap into for further support (in addition to here - you can belong to both!!).

I hope you get the understanding and support you want.

Ali

[Richgirl in reply to Ali_H]

🍁Thank u very much. I'll look into that also. I hope your doing well. Take care.

[nomoreheels]

You've had a pretty rough ride haven't you, I'm sorry. I can sort of understand how you'd be diagnosed with MAC given that chemo meds heavily reduce your immune system, you were very unlucky though because it is quite rare. Good news though that you've beaten breast cancer, that must be something to cheer about. In a way given your previous history & the bashing you've had it could maybe have been predicted you'd be diagnosed with RD, being immunosuppressed for so long you'd have been lucky to escape it. By the way many of us use RD (Rheumatoid Disease) rather than RA, it serves to separate it from the arthritis most know & co fuse it with, the more common degenerative arthritis, OA, though many of us have that too lol!

Whilst not overly common ILD is known to be diagnosed alongside RD, a few of our members here who also have it will be along to share their experiences I'm sure. Just as RD can range from mild to severe so can ILD so until you have all your results in & talk through them with your specialist hang fire & don't worry yourself too much, you can ask him all the questions you want to once you know what you're dealing with. You've found out the hard way rootling around the net isn't advisable! It's something I have an interest in, lung conditions & autoimmunity. You see I had a spontaneous pneumothorax many years ago & I still have less lung capacity on the left. Whilst it's not a bother generally it's one place which is really affected when I get het up or have a common cold, rarely do I get away with not needing antibiotics. My first Consultant told me I should pay attention to any changes as it's now a weak spot & never to ignore anything unusual breathing related. Once I started MTX he also took biannual chest x rays.

I hope you find it helpful being here. You may also find the HU British Lung Foundation site helpful too healthunlocked.com/blf, I'm sure like us here they welcome overseas members. 🙂

[Richgirl in reply to nomoreheels]

Thank u so much. It sure helps to have support with other people that r dealing with things as well. I've been looking at natural things too. I have been listening to this man Doug Kaufman who has a show called "know The Cause". I've been studying him for years. He believes that a lot of disease r caused by fungus. I listen to a lot of different people but I always come back to his beliefs. Of course I don't know. It's just that it makes since with all my other symptoms I have. But one of the great things about his treatment is it's all based on a very healthy diet. So I figure what do I have to lose? It's all healthy. I'm still going to go to my doctors because I know that's also important & I will let my doctors know what I'm doing. I most of Doug Kaufman's books & im learning how to make some of his healthy recipes. Trying to sort everything out. Thank u for all your notes. I will keep everyone posted as thing avail. Be well🍁

[Joy_1]

Hi Richgirl

I have ILD caused by RA. In fact the very first symptom I got was a persistent dry cough which just would not go away.

Please don't freak yourself out by reading all the stuff on the net it is not worth it. Wait till you get the results and then let your Consultant fill you in.

My ILD thankfully (and long may it continue) is very mild and the Chest Clinic have told me that if I can get off the steroids then they can sign me off.

My Rheumatology Consultant was a Chest Specialist in his former life so I feel lucky to have both camps looking after me. He got me to listen to my chest using a stethoscope and showed me my CT scan in detail.

My lung function was very poor when I first presented at Clinic but I swam swam swam and now my lung function is back in the normal range.

So as I say, wait for the results.

I'll keep my fingers crossed for you.

Joy

[Richgirl in reply to Joy_1]

Thank you joy. My cat scan was read now & it says mild ILD sepal associated with COPD. I ask if I need a biopsy to make sure. He said there's nothing to biopsy. I don't know what that means for sure. I tried to ask as many questions as I could. He's a very nice dr & listened to my concerns & answered everything but I still don't understand what this means. He gave me a new inhaler & I see him in 4 months. So I will try & stay positive. Oh I flunked my lung function test too! Funny to, I've never smoked ever. But I guess there's other reasons for this. That's wonderful for you! It sounds to me like your healing. Blessing to u & everyone. Richgirl😉

[Joy_1]

Hi Richgirl

Did you get to see the CT scan? As I can understand why there is nothing to see by taking a biopsy in my case - it was all to see on the scan and he explained it very clearly to me as to what was going on.

I flunked the lung function test too Richgirl. So I asked the Chest Consultant - okay what do I do other than pop pills. And she was the one who told me you need to get aerobic to increase your lung function so swim swim swim. And that is what I did and 14 weeks later when I returned for another lung function test my lungs were back in the normal range. The bottom end of normal but nevertheless normal. Initially I could only swim 2 lengths before I was gasping. By week 14 I was doing 65 lengths three times a week.

She said wow we have never seen this happen before ..... you can now cut back on the swimming. So I then switched to aqua aerobics. Hooray! It got very boring swimming that much 3 times a week.

Why don't you ask if there is anything you can do to help yourself.

Good luck!

Joy

[Richgirl in reply to Joy_1]

wow!!! That's remarkable. I did just join a health club called the YMCA. They do have a pool. I'm going to try that too. I didn't get to see my cat scan. But he did tell me that upper body work outs will help my lungs. I'm in a wheel chair due to RA. I have a knee that's locked & I can't straighten my leg out. But there pool is for people like me. It's only 4 feet deep & they have a chair lift to get me into the pool. So I'm going to look into that! Did u say they did take a biopsy for you? Anyway thank you for letting me know about the swimming. Richgirl

[Joy_1]

Good to hear you have a pool that meets your needs re wheelchair etc. I'm sure it will help lift your spirits too!

I'd take some advice re what to do and how much to do so that you don't end up hurting yourself.

No, no need for biopsy, CT scan showed the damage clearly and put my mind at easy. I just hope I stay in this way long term.

Joy x

[Richgirl in reply to Joy_1]

Thats great!! I too shall be at ease. Yes I'm going to take it slow at first. I believe the key to great health is to try & stay positive, get plenty of sleep. Exersize. Eating a very healthy diet, keeping as much stress away as possible & having a spiritual or religious belief. Easier said then done ha, but I'm constantly working on it. I'm so happy we all have each other on this site. Blessing to u & yours. Richgirl

[Joy_1]

Sounds like a good plan Richgirl!

Thank you for the blessings, they are very much appreciated.

Joy