Do you have any information about ILD?

[lavishgail]

Hi, I was wondering if anyone had any information about ILD (Inflammation lung disease?) That's what my doctor called it. I just dont know exactly what to look up? So if you have any information about this disease I would be so happy if you could put it up here so that I can learn about it thank you very much in return, love Gail.

[David]

Is this ILD?

www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/symptoms-causes/syc-20353108

[lavishgail]

Yes David! Thank you so very much!! The exact same thing I have.

[gerald]

Here is the posting from Wikipedia.

en.wikipedia.org/wiki/Interstitial_lung_disease

It tries to put some of the broad categories of diseases that fit under ILD.

This also provides some information:

www.webmd.com/lung/interstitial-lung-disease

The category is so broad that I am not sure there will be enough detail to help you.   If you are able to narrow down which of the diseases/symptoms your doctor has identified we might be able to do a better search for you. 

[lavishgail]

Gerald, I have Lupus too and M.C.T.D. (Mixed connective Tissue disease), she said goes along with this. She called it (ILD) (inflammation lung disease.) But anytime I look it up it ended up something else breathing in hurts and I cannot push out all of my air. Also I have emphysema, she showed me on the exray, but my doctor said it was very little. She also said the inflammation come so fast you can not here it in my lungs you can only see my pneumonia in cat scan or exray! This happens often one day perfect next day feel like dyeing!

[lavishgail]

Also I have pneumonia all the time, so this is why I'm going for operation to perhaps see what type I have? On the ex-ray it looked like a mistyness all through my lungs, also white lines going through like lace. That was the inflammation but it was very strange my doctor said, she had really never seen it be4. My white blood cells were up to 30.000 , makes me wonder if I have Lung cancer? After huge antibiotics meds drip by vein and high doses of steroids it made me better right away, helped me breath, and on exray showed clear again, but breathing test were bad!! Could not push out air very good! Idk? I see the surgeon on Wednesday morning at 8am. Tuesday cat scan of lungs.

[joany]

So terribly frustrating.

Just praying the answers are just around the corner.

Attachment Deleted

[David]

Do you get the pneumonia shots?

My doctor told me there is a knew one out this year but I have to ask my pharmacist to give me the shot. The doctor don't have it. I don't know why it is this way.

This is new. Not the latest one Prevnar 13. Doctor said I need to get it.

Last time I had pneumonia was in 1983 after getting covered with crude oil.

[gerald]

Gail, the "Mixed connective Tissue disease" describes a lot of your symptoms and Lupus is part of that disease.  They refer to is as an overlap of several diseases.   Your COPD probably complicates the situation.

You may already have looked at this two links, they may provide some information about potential treatments.

www.medicinenet.com/mixed_connective_tissue_disease/article.htm

www.merckmanuals.com/en-ca/home/bone,-joint,-and-muscle-disorders/autoimmune-disorders-of-connective-tissue/mixed-connective-tissue-disease-mctd


Please hang in there.  I pray the doctors appointments etc will provide you with some relief and answers to the many questions that you must have.

[lavishgail]

Yes David. I do. Thank you Joany and Gerald.
Love Gail.

Ps. Gerald there was a lot of things I didn't know about M.C.T.D! So Ty.

[jarca]

interesting posts & great links;

i have COPD & also "pulmonary fibrosis" (PF), but in some of my HRCT scans they now call it "Interstitial lung disease" (ILD).
it does get confusing!!!
my "PF/ILD" they believe is from my working in a rock mine & the 'silica dust' cause, but then i also live on a farm & many years of cleaning out chicken coops (birds can cause) & the hay dust hand stacking hay-----all are causes of PF/ILD, but i refused to let them go in & take samples of my lungs just to see what caused it.

did you know that most Pulmonologist specialize in COPD ----- very few specialize in PF/ILD......but when i went to "the pf specialist in utah" she confused me more than ever!!!
she wanted to go into my lungs & take a sample to see what caused the PF/ILD & she wanted me to take a med called "espriet" that has more side effects than helps ---plus was too expensive for me.
that med i think 

[lavishgail]

Hi Jarica, Thanks for telling me what you're side was like. It is very scary. Now I also lived on a farm and walked barefooted through stuff most people WOULD probably pass out just thinking of it . One of my friends had a muscle car and he came over to show it off, well, I Just couldn't wait to hop on in, and get a ride . I ain't never seen anyone turn so red and get so upset as he did!!! HAHAHAHA You see I was barefooted and he knew the stuff I'd step in
Or should I say slid accross the field in, hahaha. Yes, the haying, and the wood spliting, I'm bigger on the top then I am on the bottom because I was so strong with splitting wood so they gave that job to me because I did it so well yay, great, had bigger arms than my own father hahaha.

So yes, I can really relate. Especially Birds! one of the types of birds are pigeons, I have never been around pigeons. Really all birds but pigeons are the number one.

I simply want this done because if I am ingesting something in my own home say even if it's a can of Lysol or a candle or maybe it's something I'm eating one never knows. but I come so close to death because of it. that I can't take another chance I need to have this done to find out what is it I'm ingesting because, the inflammation gets so bad that it doesn't give them much time. So we have to find out and it's very scary yes because, they're going through my chest not through my ribs with a camera they're opening up my chest and I am very scared very, very, very scared, but I want to know what is causing this so I can stay away from it! or maybe it's something that did happen to me as a child? We don't know? maybe we'll never know? but this is a chance for me to Maybe find out, and I can maybe breathe better if, I stay away from it. plus, I do have they said emphysema when they showed it to me it wasn't a lot and when I say I have 69% of my lung that doesn't mean left it means what I breathe out so I don't know any other numbers other than I can only breathe out 69% I can breathe in fine but I can't breathe it out so I don't know the other stuff just when I'm passing out my air I can only blow out so my lungs are at 69% when I blow out.

Jarica the name of IDL was confusing for me because I looked it up and I saw two different things the fibrosis and the inflammation so I was really confused but it's all the same the fibrosis the inflammation. it's all the same disease. it's just that they've come up with different names for it.

it's always been ild but it's just they found different names for it great I think none of them sound good.

Thank you so much Jerica for telling me, because I don't feel so alone and I am glad I'm not the only one with this! not to say that I'm glad you have it because I'm not!!!!! but at least I know somebody else also has something I have and I can ask you questions about it I hope. Another question I have for you is do you get pneumonia a lot? And when you do have it if you do? Do you ever come close to death? This happens to me every time I get pneumonia and end up in the Hospital close to death and that is no lie, because they don't know why this happens so fast. This Inflammation?

But anyhoo thanks.
Love, Gail

[jarca]

Gail,
I used to get pneumonia all the time, but then i got the vaccine & don't seem to get that now.
i am actually confused WHAT i get when i have lung infections as my dr always says my lungs aren't moving air & puts me on antibiotics (even if i start with a virus i end up bacterial)

The way it was explained to me is that i don't cough up enough mucus so it just sits in my lungs (& rots) until it becomes infected & inflamed. then that inflammation causes my lungs to shut down.

i don't know about others but i cough & gag & choke until i cough up really thick dried up 'mucus plugs'---it's not getting those things up that causes me infection; does that make sense?
i'm trying to find a link but all of them about this are either so complicated or go off subject--- can any of you good internet wizards find info on "lung mucus plugs cause infections"?

[gerald]

I thought this was an interesting article given the discussion that have been going on.



------------------------

Interstitial Lung Disease Diagnoses Usually Inaccurate, Emotionally Trying, Patient Survey Shows
by Jose Marques Lopes, PhD

A nationwide patient survey highlights the lengthy and often inaccurate diagnosis of interstitial lung disease (ILD), as well as the emotional stress it causes in patients.

The research, “Barriers to timely diagnosis of interstitial lung disease in the real world: the INTENSITY survey,” was published in the journal BMC Pulmonary Medicine.

The Interstitial Lung Disease Patient Diagnostic Journey (INTENSITY) survey quantified the challenges of diagnosing ILD and was conducted through a collaboration between the Pulmonary Fibrosis Foundation and Veracyte, a genomic diagnostics company.

Idiopathic pulmonary fibrosis (IPF) is a chronic type of ILD that causes progressive scarring of the lungs. Diagnosis of IPF is currently done with high-resolution computed tomography (HRCT), which frequently leads to inconclusive diagnosis. Because of that, patients often need to undergo risky surgeries to confirm their disease. Others are too frail for such an invasive approach, leading to potential misdiagnosis and ineffective treatment.

Researchers conducted the online INTENSITY survey to evaluate the challenges involved in ILD diagnosis, such as the obstacles and time needed for accurate diagnosis, as well as the physical and emotional toll on patients.

INTENSITY included 600 ILD patients — 300 men (median age 69 years) and 300 women (median age 63 years); 279 (47 percent) of whom had IPF. Most patients had been diagnosed in the prior two to five years.

Results showed that 43 percent of patients had to wait more than a year from the onset of the first symptoms, mainly shortness of breath and cough, until diagnosis. Almost one in every five (19 percent) waited three or more years for a correct diagnosis.

Furthermore, more than half of the patients (55 percent) reported at least one misdiagnosis before receiving a correct diagnosis, with 38 percent receiving at least two misdiagnoses.

Importantly, 21 percent of the respondents with IPF reported receiving treatment with systemic corticosteroids prior to diagnosis. Such therapy can be harmful for IPF patients.

“Our results show that the typical diagnostic experience for patients with ILD, including IPF, is characterized by considerable delays, frequent misdiagnosis, exposure to costly and invasive diagnostic procedures and substantial use of healthcare resources,” Gregory P. Cosgrove, MD, the study’s lead author, said in a press release. Cosgrove is chief medical officer at the Pulmonary Fibrosis Foundation.

The results also showed that although an accurate diagnosis of ILD was primarily done by a pulmonologist (88 percent of the cases), multiple prior visits to a primary care physician were frequent, with 30 percent of patients making four or more visits before referral to a specialist.

“These findings underscore the need for physician education, practical clinical guidelines, and improved diagnostic tools that increase the speed and accuracy of diagnosis and facilitate early therapeutic intervention,” the researchers wrote.

Concerning examinations conducted before diagnosis, patients underwent an average of six lung function tests, five chest X-rays, and two bronchoscopies. Furthermore, 61 percent of ILD patients underwent invasive procedures, including surgical lung biopsy.

More than 80 percent of patients had emotional stress associated with the difficulty in obtaining an accurate diagnosis. Also, 28 percent revealed that the time spent on medical appointments and doing diagnostic procedures contributed to their decision to apply for disability benefits or retirement.

“The publication of these findings underscores the tremendous need for patients with suspected IPF to get clearer answers faster so that they can receive the treatment they need and avoid potentially harmful diagnostic procedures and treatment,” said Bonnie Anderson, chairman and CEO at Veracyte.

Aiming to improve IPF diagnosis without requiring surgery and to reduce healthcare costs, Veracyte introduced its Envisia Genomic Classifier in October 2016. This technology uses samples collected from less-invasive bronchoscopies.


lungdiseasenews.com/2018/01/23/interstitial-lung-disease-diagnosis-wrong-survey-results

[jarca]

wow I can sure relate to that last post gerald!
I did great my 1st 2 years after being diagnosed with COPD (2010) as that is when i was put on supplemental 02 & i could breath again.
Then I went thru what i call "the year from hell" in 2012 & made to feel that I was a hypochondriac before I finally got the HRCT & 'in chamber PFT' that diagnosed my PF/ILD! 
It's not a really nice diagnosis to get, especially when all the dr's i asked said I had 2 to 5 years to live (i passed the 5th year heh heh heh). But it was so good to have an answer finally to what was happening to me that it was actually good to hear what was wrong with me----when i know what is happening, i can deal with it; that not knowing what is happening to you & no professional listening to you is the worse feeling in the world (to me)

great article!

[lavishgail]

Hi Gerold, Thank you so very much for taking the time to find this article, it really mea s the sorld to me

[lavishgail]

Well I reread everything here again and I have most of it. I am afraid to have the operation and I may not do it. Oh and Jerrica I do know how to cough up phlegm if you put your neck down to your chest I mean your chin to your chest and cough deep it comes right up I can get mine right up I don't know how I do I sound weird I'm sure if somebody hears me doing it they think I'm up horse in here doing something weird but that's how I get it up take care night night