1. < COPD: Chronic obstructive pulmonary disease

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.

shawnb1 | @shawnb1 | Oct 8, 2018
In reply to @bb729 "I was on 40mg over 10 years ago for UC. In the interim I developed severe..." + (show)
@bb729

I was on 40mg over 10 years ago for UC. In the interim I developed severe stage 3 COPD. Knowing prednisone isn't really good for anyone especially long term I weaned myself down to 15mg daily about 6 years ago. It's about as far as I could go without impacting my breathing. Guess my lungs got use to it and like it. I have had uncontrolled diabetes for over 6 years (i'm sure prednisone related) went from 185 -220, faces is puffer than normal, swollen feet, swollen abdomen (prednisone , diabetes, & little to no exercise) for the most part I sleep good. I think I'm going to take another shot at getting of prednisone at least for a while to see if I can lose weight and get my sugar down.8 years ago I would never take an aspirin unless I absolutely needed it and now take 10 pills in the morning and 7 at night, Plus 3 inhalers. I'd like to get back to my fighting weight if only for a few months 🙂 Taking a lower dose does help my breathing and when I experience a flare up we do a micro boost (40 for 3 days , 30 for 3days , 20 for 3 days then back to normal) in addition and antibiotic. So far it's kept me out of the hospital.

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I'm on 40mg 3x daily. Yes, no history of diabetes in my family,yet sterroid.induced my sugars are high. I have opted not to do a sliding scale imsulin. I'm miserable,but I'm alive. I am a bit more congested and wheezy today. I also have oxygen therapy.if I need it. Took 2 weeks home for me to go to as needed. I'm just wanting a diagnosis?? I've been tested seems like everything, then the broncoscopy, they could only specimen fluids, that went to Mayo?

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shawnb1 | @shawnb1 | Oct 8, 2018
In reply to @tinkerbell "@shawnb1 - from Tinkerbell - I agree with the horrible side effects of Prednisone. I have..." + (show)
@tinkerbell

@shawnb1 - from Tinkerbell - I agree with the horrible side effects of Prednisone. I have GCA and was started on 60 mg. A year and a half ago. Tomorrow I will be taking my last 1/2 mg. Pill. Now the problem will be do I have to go back on if I have any problems with new symptoms. I had all of the side effects - weight gain, swollen face, sleepless nights, swollen abdomen, swelling above the waist, swelling on the sides of my neck and I am sure I missed a few.

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I told my primary care physician I'm not doing this steroid stuff. I left the hospital a size 10/12, I had been 3 weeks on the Paleo plan(75%), had lost 13#, at Discharge was 154#, last Thursday 174#, I'm 5'2. I already battle depression and feel like my meds don't even phase me. It's like I'm in a fog, memory is poor, I'm unsteady, I just don't feel right? Something is being missed here? I'm 49, I just don't get it?

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shawnb1 | @shawnb1 | Oct 8, 2018
In reply to @johnbishop "If you have a Mayo Clinic Patient number you should be able to log into the..." + (show)
@johnbishop

If you have a Mayo Clinic Patient number you should be able to log into the patient portal. You may have to register first if you have never logged in.

Patient Online Services
-- https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline

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Thank you so much. I guess when I go to my pulmonologist tomorrow I'll get copies from Mayo. They are open b-day til 5( mayo business) to help me create an acct. I really love this website. This hospital looks amazing! Wish Arkansas had it!!

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Ethan McConkey, Moderator | @ethanmcconkey | Oct 8, 2018
In reply to @seanlroop "Not sure how you are taking your prednisone, but I would break it into a majority..." + (show)
@seanlroop

Not sure how you are taking your prednisone, but I would break it into a majority in the morning and then the rest at night. Like 3/4 in the morning and 1/4 at night. Your cortisol should build at night, but maybe you just do not have enough. It is a juggling act. Get a good night sleep and regulate your sleeping patterns as best that you can. IMHO... Best of luck to you! Sean L. Roop (Private message - with any questions).

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@seanlroop you may have noticed I removed your email from your post. I appreciate the generous offer to @tcont2000 to share your personal contact information to answer questions etc. However, I'd also like to underline the benefit of sharing here on the forum. It was because of the sharing here that @tcont2000 was able to find these conversations in the first place. By asking questions and getting answers here, you will both be creating a treasure trove of valuable information and first hand experience for those with COPD and interstitial lung disease. I encourage you to continue your exchange on Connect and thank you for being willing to do so.

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1 reply
seanlroop | @seanlroop | Oct 8, 2018
In reply to @ethanmcconkey "@seanlroop you may have noticed I removed your email from your post. I appreciate the generous..." + (show)
@ethanmcconkey

@seanlroop you may have noticed I removed your email from your post. I appreciate the generous offer to @tcont2000 to share your personal contact information to answer questions etc. However, I'd also like to underline the benefit of sharing here on the forum. It was because of the sharing here that @tcont2000 was able to find these conversations in the first place. By asking questions and getting answers here, you will both be creating a treasure trove of valuable information and first hand experience for those with COPD and interstitial lung disease. I encourage you to continue your exchange on Connect and thank you for being willing to do so.

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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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 8, 2018
In reply to @seanlroop "I did not mean to do anything outside the limitations set forth in this blog I’m..." + (show)
@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.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 8, 2018
In reply to @shawnb1 "I was hospitalized 11 days in Arkansas at a St. Vincent's. Unknown lung issue? Because I..." + (show)
@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!

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2 replies
shawnb1 | @shawnb1 | Oct 8, 2018
In reply to @windwalker "@shawnb1 Hello Shawn. Some of the lab results from the bronchioscope can take six to eight..." + (show)
@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

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rudyhoskot1 | @rudyhoskot1 | Oct 8, 2018
In reply to @shawnb1 "I, too am on high dosing of Prednisone. Horrible side effects, but the only thing I..." + (show)
@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.

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wba3721 | @wba3721 | Oct 9, 2018
In reply to @aldrichgirl "I was seeing a transplant dr from Dallas & he told me I had to get..." + (show)
@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?

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