r/COPD

Hi all, I'm new here. I haven't been diagnosed yet, but I can tell there is something wrong with my lungs. I smoked for 5 year, a pipe and inhaled (incredibly stupid), in the 4th year I get bronchitis pretty bad but continued to smoke for another year before quiting.

It's been 2 years since I quit and I've gotten bronchitis 3 more times. This last bought lasted 3 months before I felt like myself again.

My husband was diagnosed with COPD a couple of years ago. He’s has all the pulmonary testing and scans and takes Trilogy and a rescue inhaler.
However in the last 8 months he’s really slowed down. He’s 77 which makes sense. However, lately he’s said his legs don’t work. When I question him if they hurt he says no. He is constantly criticizing everything I do or say. I’m worried he could be having other neurological problems.
He’s very stubborn.
My question: is this a part of the COPd? Has any one else had my experience? I’m worried.

Hello. I am need some advice. Really struggling. I have been on Trilogy 100 for many years and have done well. I am very sensitive and have had extreme difficulty switching to new machines due to my extreme sensitivities. Luckily my provider was able to find me a new machine like mine. Unfortunately this one is very loud. I hear the air in my mask. I have a fan by my head. The machine away from me. The filters have been changed and my mask is adjusted properly.

I don’t know what to do. Are there better machines to try? Are there different masks or tubes or something I could try to get rid of the noise, Any advice would be greatly appreciated. I am really struggling.

Thank you in advance. 🙏🥹

Does anyone have any experience on long term Azithromycin for asthma?

Hi all. I've recently been considering trying for a lung transplant. I was evaluated about 5 years ago and was told I was still too healthy, but my pulmonologist thinks that I may qualify at this point. There is an age cutoff which I am approaching, but my pulmonologist says they might extend that.

My biggest concerns are, number one, it seems like a very heavy surgery with a very difficult recovery.

Number two, the medications for anti-rejection. My late husband had a kidney transplant and I'm pretty sure the drugs he had to take exasperated his existing mental health issues. My mental health is pretty good but that is still a concern.

Number three, the average life expectancy after a lung transplant is only 5 years. I assume if you survive the surgery you probably get more than that on average. I really want to outlive my little dog who is only 6 years old. I expect he could possibly live to be 20 years old so I need to live another 14 years at least!

Have any of you had a lung transplant and can you speak to these concerns?

Hi everyone, I am working on an independent, non-commercial research project to design a simplified, textless home mobile tool for older adults with severe COPD. The goal is to let parents track symptoms in under 10 seconds without typing, automatically fetch home oxygen data, and instantly alert family caregivers if their breathing drops below peer-reviewed safe guidelines (The Anthonisen Criteria). I am an independent developer trying to learn about actual family caregiving constraints so we can build tools that keep chronic patients safely out of the hospital emergency room. If you are a patient or a family caregiver, your personal feedback is incredibly valuable. I have a brief, anonymous 2-minute validation form published to collect your workflow experiences. *** I will drop the secure Tally form link in the first comment below to comply with community posting rules. *** Thank you so much for your time, your insights, and for everything you do to support your families.

Hello, I am a 25F, 5’6 and 170lbs. Recently, I started experiencing difficulty breathing during the day.

For example, I would be fine if I’m occupied with something (and not paying attention to my breathing) like when I play games, I would be completely fine. However, when I get to wind down and “relax,” I would feel like out of breath and would struggle to breathe here and there. It would go on for around 30 minutes to an hour every time. It doesn’t affect my sleep. I usually go on 30 minutes to an hour walks before but just these past 2-3 weeks, I’ve been struggling.

I have also noticed it happens if I’m having a hard time digesting my meals. I was wondering if acid reflux or anything is the case. Or, if it’s the weather?

I’d appreciate any help or advice. Thank you.

Can only a pulmonologist help with COPD? All of the ones in Tucson are far from where I live. Do you think my regular primary care doctor can help me manage it?

So its been about 4 days almost 5 days since my father fully had his tube removed since the collapse and hes been home for about 3 days ish and his oximeter has been all over the place. Now he was just up at the hospital and that was the first time he found out he had emphysema. He got test done at that hospital and a pulmonologist came into see him they tested to see if he needed supplemental o2 ig he didnt need it from what they said. Anways his levels have been jumping all over the place from 79 being the absolute worst hes ever seen it (lays on the bad side that collapsed) then it jumps around 85-93 ish still laying on that side being concious how he breathes. If he sits straight up and checks it its more consistent around 87-92 ish for the most part then when he doesnt little movements it spikes up to like 96 maybe and thats the most and longest it consistently stays up in the 90s. He hasnt been to a pulmonologist, the appointment theys scheduled for him is like a month from now for a pft test. Anways main question, is his right lung really that much weaker than his lung that collapsed or ig people that may have dealt with similar sceanarioes because hes only 45 and its scaring me but then again i dont know what his baseline is even at because his collapsed lung has only been unirretated for maybe 4 days fully since that tube was removed.

I understand O2 numbers but having a bit of trouble with the why's. I'm now on supplemental O2 and doing okay at 88 - 92 but upon exertion I get wiped out as the O2 drops which is understandable.

My understanding is this is due to CO2 retention/breath stacking which can be helped by pursed lip breathing. Is it that simple or am I missing something?

Asking for my friend. In his latest venous blood gas, CO2 was 72. PH is normal.

His next appointment with the doctor is in November. Isn’t that too late? Should he be monitoring CO2 levels more frequently?

Hi community,

I'm sharing my dad's story here in hope someone can offer some hope, words of wisdom, or share their own experience. We are in the UK.

Summary:

Diagnosis: Organising Pneumonia, ILD umbrella, with fibrosis.
Dad's age: 68
Before illness: Incredibly healthy, never smoked, no risk factors, previously would go on 10 mile hikes.
Time in hospital: 3 months
Time in ICU: 17 days
Weight lost in hospital: 16kg
Drug Treatment: The Drug Infusions: Cyclophosphamide. The Steroid Tablets: Prednisolone. The Lung Scarring Prevention: Pirfenidone.

Dad's Story

3 months ago my dad was sick with a cough, exhaustion and fever and was sent to the hospital by his local doctor as they believed he had a nasty bacterial pneumonia and his oxygen saturation was alarmingly low. They tried over 4 different antibiotics but his breathing was not improving and after 2 weeks in hospital he was admitted to intensive care and put on a ventilator for 7 days. When on the ventilator, the doctors pivoted strategy, diagnosing him with Organising Pneumonia and administering industrial level steroids via injection, alongside proning him on his front for 12 hours at a time. He responded to the steroids and proning, and was able to come off the ventilator and onto high flow, and was then given a tablet form steroid called Prednisolone.

10 days after he came off the ventilator, he got moved from icu to the respiratory ward for 3 weeks, before being discharged with oxygen. When he came home he was extremely immobile and weak, needing oxygen and a walking frame to move between rooms. Climbing up stairs could take 10 minutes as he had to have breaks to catch his breath.

After 10 days at home, an ambulance was called as his oxygen sats dropped really low. This was after the doctors told us to reduce the number of Prednisolone tablets he was taking from 6 to 5. I have read that it is common to see a relapse in OP recovery when tapering steroids too early.

He went back to hospital 7 weeks ago, and he is still in hospital today (29/06/26). The doctors believe he has an ILD, with fibrosis, as the CT scans are showing ongoing inflammation, and scarring, which he didn't have when he was discharged from hospital the first time. We are told this is a 10 in a million illness, and my dad has an incredibly rare form of it.

He is now being given two specialist drugs: Pirfenidone, which should halt and prevent further lung scarring, and an immunosuppressant called Cyclophosphamide.

Where we are today

Opinion varies greatly regarding dad's prognosis. The latest CT scan is showing no change since before he was given both specialist drugs, which is a positive sign as it shows the drugs have halted the progression of inflammation and scarring. One doctor actually believes there is a small improvement on the scan.

When he was first readmitted to hospital we were told there's a "50% chance" he has an aggressive pulmonary fibrosis, that he may deteriorate rapidly and the only option would be end of life care. That was 5 weeks ago, and since then, Dad's requirement for oxygen has reduced and he is being weaned off high flow onto a face mask. He is getting into a chair for a few hours every day too. We feel we have beaten the 50% chance odds of rapid deterioration, but what next?

Some doctors feel he may always need oxygen, some feel he will need oxygen but only in the medium term, some feel he could be housebound, some tell us that people with lung scarring can still play tennis, the spectrum of recovery feels incredibly wide. He will need months of rehabilitation to be able to build up his strength again and put the weight back on.

It is also hard to put his breathlessness down to his lung damage vs his extreme muscle wasting and deconditioning as a result of being bed bound for 3+ months.

Please share any words of wisdom

Has anyone experienced something similar, do you have insights to share?

My dad’s oxygen is low enough (dropped to 87 prior to walk test) that they couldn’t do walk test and gave him oxygen instead. Now he’s prescribed oxygen. But I have no idea where to go from here and how to get that device
He’s EXTREMELY reluctant, skeptical and mildly depressed about it.

I don’t know if he’s going to want to spend thousands of dollars (or several hundreds) for oxygen concentrator. So I’m preferring to get him a small or portable one. Are there any recommended brands?

What does this all constitute? Please someone explain it to me like I’m 5 year old. We need a service and a nasal cannula and that’s it?

My Amazon search is showing me columns, batteries and backpacks. It’s incredibly confusing!

Also, he has medicare. Does it typically cover that?

—-

One last question, has anyone been able to be weaned off oxygen or is this something that only gets worse with COPD and recurrent lung infections?

I was wondering if anyone can recommend any air purifiers that would be good for people with COPD?

Or generally what specs to look for?

Thank you.

I’m looking for honest experiences from people with COPD, caregivers, respiratory therapists, nurses, or doctors because I’m struggling with what I’m seeing.

My mom is 75 and has COPD. Up until recently she was getting around much better and did not need oxygen at home. Over the past few weeks things have changed dramatically.

She was hospitalized for a COPD exacerbation and possible pneumonia/bronchitis. She was discharged on oxygen and steroids, but since coming home she seems incredibly limited.
Some of the things we’re seeing:
She now needs oxygen at home.
Even small activities leave her extremely breathless.

Taking off a shirt, walking to another room, or getting up from a chair can make her feel like she can’t catch her breath.

Her oxygen levels can be in the 90s while resting with oxygen, but when she walks they sometimes drop into the 80s.

She gets exhausted very easily.

Talking for long periods can be difficult.
She coughs up mucus.

Some days seem better than others.
She has a lot of anxiety because she feels like she can’t breathe.
I’m terrified that every bad day means her lungs have permanently gotten worse.

What scares me most is that she seems so short of breath even though oxygen is helping her numbers. I don’t understand how someone can have oxygen readings in the 90s but still look like they’re working so hard to breathe…

A few questions for people who have been through this:

Did your breathing remain awful for weeks after a COPD flare, pneumonia, or hospitalization?

How long did it take before you knew what your “new baseline” would be?

Has anyone gone from needing oxygen after a flare to eventually needing less oxygen or coming off it entirely?
Is severe breathlessness with minimal activity common during recovery?

Can recovery continue for weeks or months, or do you usually know fairly quickly whether the decline is permanent?

What signs suggested improvement was coming?

What signs suggested things were getting worse?

Im trying to be realistic, but right now it feels like she’ll never get better and that this is the beginning of the end. I’m hoping to hear from people who have lived through something similar and can tell me what recovery looked like for them.

Thank you.

Have my first ABG and PFT next week ... have had a lot of confusion lately, red face, left side gait issues, balance, left chest pain, pain in left arm/shoulder. Recent EKG has no issues. Also have been on disability for anxiety with depression, and I think in the last 2-3 months or so, I may have started to retain CO2 to a high degree - there is increased internal chatter, less access to memory, presence without internal narrative severe headaches, etc. I have not done my self any real favors over the past while in regards to the overall health, but now this seems to be getting progressively worse quickly, which prompted me to arrange a private chest CT and brain MRI. Brain MRI showed some white matter hyperintensities which the radiologist flagged as unalarming, however they do not know about the overall picture. Was thinking could be autoimmune encephalitis, paraneoplastic ballpark or similar. Just wondering what the community thinks of these results from the chest CT:

The aorta is within normal limits. A 3 mm focus of calcification is seen at the proximal aspect of the left

anterior descending coronary artery which can be correlated with cardiac risk profile. There is significant

heterogeneity of the enhancement of the pulmonary arterial system making evaluation nondiagnostic as this exam

has not been targeted for pulmonary arterial evaluation. Small mediastinal and hilar lymph nodes are evident

 

Advanced changes of centrilobular and paraseptal emphysema are seen with an upper zone predominance with

prominent bullae identified. One of the largest bullae is towards the right apex measuring 6.3 cm transverse.

Mild to moderate retained secretion within the trachea. mild multifocal bronchial wall thickening compatible

with sequela of inflammation. Mild bilateral apical pleural scarring. Some scattered areas of mild parenchymal

scarring are also visualized in the upper and lower lobes predominantly. A 6 mm subsolid appearing nodule is

seen in the apicoposterior segment of the left upper lobe on axial image 77 . This could relate to a

conglomerate combination of bronchovascular markings and scarring rather than a nodule however as the latter is

not completely excluded short-term CT follow-up can be obtained.. No other significant pulmonary or pleural

abnormalities are seen.

 

Limited upper abdominal assessment demonstrates no gross abnormality.

 

No acute osseous abnormality is seen.

Thanks for looking - if anyone knows of a residential center or similar in Canada one could go to in order to ... accept all of this, try to rewire the brain and nervous system, that would be much appreciated. I have been sleeping so poorly (using zopiclone) and been isolating, suppressing emotion, etc. which has likely exacerbated everything.

Muchlove.