Severe COPD and Interstitial Lung Disease

Posted by aldrichgirl @aldrichgirl, Jul 1, 2018

I was diagnosed several years ago with COPD after 40+ years of smoking. In the subsequent years we have learned I have 4 or 5 interstitial diseases including Interstitial Lung Disease. The two have been about equal but recent testing showed the interstitial is much worse than the COPD. I would love to know if anyone else has this problem and what the effects of the interstitial side are. I have been on O2 for years but just recently I have gotten so bad that I can barely pull 91% while sitting and on my home concentrator. I had always been able to pull 90% without the oxygen. That's how much worse it's gotten and walking is almost impossible. Everytime I get up & walk around I drop down to 80%, even while on oxygen. It's getting harder & harder just to breathe. Would love to hear any comments or advice.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

@wba3721

I have IPF and my breathing is deteriorating also. I am goning to Dallas in a month or so. Do you know what drug they are considering?

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I was diagnosed with IPF a couple of years ago and have been taking OFEV that is supposed to slow the deterioration of the lungs. I'll be 80 this weekend. I also had stem cell therapy in Feb of this year. At this time I still am able to do yard work but at a slower pace than in the past. OFEV is very expensive but there is a program that Boehringer Ingelheim (the drug manufacturer) offers if you need financial assistance. There are some side affects that you will need to deal with. In my case it is diarrhea. I also have an annoying cough when I exert myself to any extent. At this point my condition seems to be stable. I hope this info will help you

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@robinson

I was diagnosed with IPF a couple of years ago and have been taking OFEV that is supposed to slow the deterioration of the lungs. I'll be 80 this weekend. I also had stem cell therapy in Feb of this year. At this time I still am able to do yard work but at a slower pace than in the past. OFEV is very expensive but there is a program that Boehringer Ingelheim (the drug manufacturer) offers if you need financial assistance. There are some side affects that you will need to deal with. In my case it is diarrhea. I also have an annoying cough when I exert myself to any extent. At this point my condition seems to be stable. I hope this info will help you

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Still no answers from APN, however she is consulting with the pulmonologists and going to call me with the next game plan, so for now she reduced the dosage of steroid, changed an inhaler, wants me to follow up with my cardiologists to see if we can stop the Plavix, (stent placement in February) in the event it is suggested I have an open lung biopsy. She did note on one of my labs from previous hospitalization that my LDH was CRAZY HIGH( range 222 adult), mine was 754

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It will be interesting what your cardiologist says about the plavix. My PCP told me to ask him (after 1 year of having a heart attack and stent) if I could stop that for a colonoscopy I I have UC) and he said to tell him to find another way 🙂 and as high as your numbers are I suspect he might say the same .

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@windwalker

@shawnb1 Hello Shawn. Some of the lab results from the bronchioscope can take six to eight weeks to come back. That is because some organisms take that long to colonize in a petri dish if they are present. Hang in there!

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I saw the Nurse practitioner yesterday. She said same thing. The test we are waiting for is a TB test?

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@shawnb1

Still no answers from APN, however she is consulting with the pulmonologists and going to call me with the next game plan, so for now she reduced the dosage of steroid, changed an inhaler, wants me to follow up with my cardiologists to see if we can stop the Plavix, (stent placement in February) in the event it is suggested I have an open lung biopsy. She did note on one of my labs from previous hospitalization that my LDH was CRAZY HIGH( range 222 adult), mine was 754

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What is LDH mean

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@redhead63

What is LDH mean

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Hi @redhead63 I'm Ethan, one of the moderators on Connect.

The LDH that @shawnb1 was referring to stands for Lactate dehydrogenase test.

Here is some more information on what the LDH test is: https://medlineplus.gov/ency/article/003471.htm

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@fighter

Has anyone had a diffusion capacity test come back with FRC N2, ERV, RV, RV/TLC, DLCO, DLCO/VA & VA well below normal (around 50%)?

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Hello @fighter, There is another discussion where your post will be visible to more members with Interstitial Lung Disease who may be able to share their experience with the abnormal diffusion capacity test. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Lung Health > Severe COPD and Interstitial Lung Disease
-- https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/

I did find some information about the test that may be helpful.

What to know about lung diffusion testing - https://www.medicalnewstoday.com/articles/325484.php

Did your doctor offer any information as to what your results mean and what kind of treatment might help?

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Has anyone had a diffusion capacity test come back with FRC N2, ERV, RV, RV/TLC, DLCO, DLCO/VA & VA well below normal (around 50%)?

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HI @fighter, per @johnbishop's suggestion, I moved your post to this existing discussion on interstitial lung disease so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

I encourage you to read what other members like @redhead63 @shawnb1 and @robinson have shared on this topic and they may be able to offer you support.

Back to you @fighter, what symptoms led to you having this test?

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Hi @wendy4122 and welcome to Mayo Clinic Connect. I got your message that you also have COPD. I've tagged you in this discussion so that you can meet other members like @frane1939 @aldrichgirl @seanlroop @shawnb1 @fighter and @merpreb

Wendy, how long have you had COPD? How are you doing today?

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