Severe COPD and Interstitial Lung Disease

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

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 .

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

What is LDH mean

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

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?

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%)?

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?

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?