How long have you lived with COPD?

Hi there. I am in Canada so, sadly, I can't be of any help. Glad you are having a wonderful time.

I’m doing fine and tomorrow will fly home and get to use my home stationary concentrator for sleep. I’m sure it will be more restful. My O2 provider is already sending me a replacement and having me send back the broken unit.

With lung problems I think more than a few of us have thought we wouldn’t live that long but I’ve made it with more than a few close calls. Tonight my breathing is ok, short of breath but I can handle it. Pain is the thing that is hunting me down tonight. AVN, probably from all the steroid use. A day at a time or moment when it happens. You move on when you’re feeling a little better but it wears me out for sure.

I didn’t know there was different types of copd, one diagnoses they gave me is from smoking, I don’t smoke. The other type is from having lung infections and I’ve had my fair share. My sister mentioned my mom smoked in the house and car while we were growing up, she was a chain smoker and we all hated it.

Morning puddy. 5 years since diagnosis. I’m on Breztri twice and Roflumilast pills for exacerbations once a day. I have shortness of breath but my amazing pulmonologist says not from the COPD - perhaps from my sleep apnea for which I’ll be doing another sleep study next month.
I also did a clinical study at Temple Hospital in Philly for chronic bronchitis - it lasted a year- and I no longer at this point have bronchitis.
I go to the gym several times a week.
There are breathing exercises I do also.
If you haven’t check out DrNoah Greenspan’s videos. He’s a pulmonary rehab specialist located in NYC. He posts free webbiners on zoom as well as pulmonary boot camp. https://pulmonarywellness.org/bootcamp-home/
Pulmonarywellness.com is his website and he also has YouTube videos.
God bless puffy.

Just perused the web-site that you recommended. What a wonderful site! How i wished I live on the east coastal line where there are sooo many more resources rather than the southeast! The study that relieved your bronchitis didn't happen to be the Rho-ox study did it, only if you feel comfortable saying. There was a study site at our Medical University but I did not qualify as I had elected to have Zephyr valve placements. Not sure I see a correlation to exclude as the valves have no effect on the bronchitis symptoms of the disease. Hope you continue to do well! Thank you for sharing.

Glad you liked Dr Noah. I’m thinking of doing pulmonary rehab with him in NYC. And have joined him on his zoom webiners- where you can ask questions.
Yes it was the RheOx and I know before I qualified they asked if I had any implants- which disqualified you- and no I did not have any implants.
I know the study was in several hospitals or clinics - one being in Charleston SC as well as NC somewhere.
Theres another study for bronchitis using liquid nitrogen but I didn’t qualify for that but the RheOx worked fine. Thank God!
Have you heard of it, the Rejuvaner clinical trial- using liquid nitrogen?
https://rejuvenair.com/
Again good luck and better breathing,

American Lung also lists trials.
https://www.lung.org/research/clinical-trials/find-a-clinical-trial?disease=COPD
Take care
God Bless

One was done in MS...My pulmonologist said the data has gone in but there results are pending. It sounds as though you may have received "it." I certainly hope so. Had not heard of the liquid nitrogen studies but will begin my research on it and then call my Pulmonologist. The valves have been wonderful......its the bronchial secretions that keep me from being all that I can be regardless of a strict pulmonary hygiene program, currently on a pulmonary rehab program but not impressed. I think I would do better in a gym with an experienced trainer for strength and conditioning. My PFT's showed a good improvement post valve insertion however had a set-back due to a medication that was causing vertigo, dizziness etc almost daily. Finally I ID'ed it and came off of it and haven't been dizzy since. Won't bor you further. Just nice to chat with someone who is clinically savvy......Best of Luck!

Yes, I did get the real deal. I’d been in the trial for over a year and was told at my last in hospital visit I’d gotten it. My own pulmonologist knew several months prior since she’d done a broncoscope to check on a penicillium fungal infection and after the procedure in the recovery room she told me lungs looking very good (no mucous plugs) and sounding great too.
Temple will keep track via phone for another 6 months. Already asking them about any clinicals for emphysema. And my doc is looking too. Will update you.

Btw you are not boring me in the least. Please continue to share. Thanks. When we share we learn and I love learning and keeping on top of new advances regarding copd.
Two new articles I’ve read:
https://copdnewstoday.com/news/kt-621-potential-medication-copd-cleared-human-trials/?utm_source=COPD&utm_campaign=558148cc8e-Email_ENL_US_COPD&utm_medium=email&utm_term=0_23d08524e9-558148cc8e-74512750
That link looks funky 👆- can’t check until I post it. Sorry

And the other.
https://scitechdaily.com/a-cure-for-copd-transplanting-patients-own-lung-cells-shows-great-promise/

Don't give up! I have had it for 10 years, and diagnosed at 72 years old. I was put on oxygen level 2 per a test at home while sleeping. Ten years later I am still the same. I too was upset on the diagnosed, because I never smoked.