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.

@seanlroop

I did not mean to do anything outside the limitations set forth in this blog I’m just not on it very much. Just trying to share my experiences and hopefully help someone in the future. Thank you for your help in guidance and I will stick to the blog and not put in my personal information. Thanks Sean

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Hi @seanlroop, one of the main reasons for keeping email addresses out of the posts is to protect each members personal information from spamming. You can still send a member a private message (PM) by clicking on their @username and then clicking the Send Private Message link at the bottom of their profile description at the top of the page. There are a lot of tips and how to information in the Get Started on Connect link at the bottom of every Connect page in the left column.

@shawnb1

I was hospitalized 11 days in Arkansas at a St. Vincent's. Unknown lung issue? Because I had cardiac stents placed and am taking plavix, the pulmonologist was unable to take tissue, however did a bronchoscopy wash??? Specimens were sent to Mayo for pathology. We have a patient portal that says new test results are in but won't show me the results? my post-discharge follow-up with pulmonology was supposed to be on October 22nd and on Friday they called to move me up I go tomorrow to get the results funny thing is here in Arkansas you see the nurse practitioner before you see the specialist so I don't know if I'm getting delivered good news or bad news or if they're going to tell me they still don't know

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@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!

@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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Thanks for the info

@shawnb1

I, too am on high dosing of Prednisone. Horrible side effects, but the only thing I started responding to

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Correction: I am not on Presnazone, I Was told one has to face lot of other problems for on going use.

@aldrichgirl

I was seeing a transplant dr from Dallas & he told me I had to get my rotten teeth out and lose down to 160 lb. I got down to 180 but I just couldn't lose that last 20. I have had several other problems to deal with and been in & out of the hospital with Afib , too much C02 in my body, unexplained anemia so bad that I had to get 3 pints of blood. That's what all's been going on just since January. The transplant dr has not been back to see me. But I have recently gotten so bad that I can only pull 80% on my portable oxygen. Same thing if I get up and walk around the house with my concantrator . Very hard to exercise when you can't breathe. With this 100+ heat we're having I've basically become housebound because I can't breathe in this heat either. I'm seeing a new lung fellow next month. They are talking about starting on a med for the interstitial. We'll see. I appreciate your help and advice. Thank you. aldrichgirl

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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?

@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

@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

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 .

@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?

@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

@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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