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Message
re: Friend of mine just diagnosed with COPD
Posted on 2/9/25 at 10:33 pm to Jim Rockford
Posted on 2/9/25 at 10:33 pm to Jim Rockford
quote:
went through all kids of tests and they couldn't find anything wrong. Today he went to the ER because he couldn't breathe and they diagnosed him
Went through all kinds of outpatient tests but the ER made the diagnosis today ?? Come on, really? Had he seen a pulmonologist for all these “tests”?
Chronic bronchitis is a type of COPD. It doesn’t have to be pulmonary emphysema.
0
Posted on 2/9/25 at 11:04 pm to Jim Rockford
quote:
ER
quote:
diagnosed him
Definitely get a 2nd opinion.
Posted on 2/9/25 at 11:32 pm to Jim Rockford
needs a real eval (i.e. pfts) to call it copd --- or someone to actually talk to him. Could be a slew of other pulmonary diseases.
- pulmonologist who has seen enough referrals for "COPD" from the ED
- pulmonologist who has seen enough referrals for "COPD" from the ED
Posted on 2/9/25 at 11:36 pm to Jim Rockford
RIP
Posted on 2/10/25 at 12:03 am to Shamoan
Whos this pussy?
Posted on 2/10/25 at 7:12 am to pussywillows
quote:
my stepfather had advanced copd...he smoked his entire adult life, and refused to quit even after he was diagnosed...he even lied to his doctor in front of me, and i told the doctor that he was, in fact, still smoking...we ended up in the ER every 3-4 months for over a year, and he was admitted each time to have breathing treatments/meds...the last time, the ER doc kept him on oxygen until his oxygen level got above 90%, then sent him home...he was dead within 36 hours...
My older brother died yesterday. The above paragraph is exactly what happened with him.
Posted on 2/10/25 at 7:14 am to Jim Rockford
I hope your friend gets good quality care and responds well to the treatment
Posted on 2/10/25 at 7:24 am to Jim Rockford
Definitely get the Pulmonologist to review. Prayers sent for your friend.
Posted on 2/10/25 at 7:46 am to Aubie Spr96
Sorry to hear that. Prayers sent.
Posted on 2/10/25 at 7:53 am to clickboom
quote:
Tell him he needs to be checked for Alpha 1 antitrypsin deficiency.
Tell me more? Does this just say “yep you have it” or is it treatable?
My dad has COPD, my granddad did as well. Both were smokers. I’m pretty sure I have it (lung capacity isn’t shite no matter how much I train) but haven’t been tested because I didn’t think there were viable treatments out there.
Posted on 2/10/25 at 10:11 am to Jim Rockford
FIL was diagnosed and passed away in 18 months. It should be noted that he smoked 2 packs of Kools a day for 60 years. By the time he put them down it was too late.
Posted on 2/10/25 at 10:48 am to Jim Rockford
ER diagnosis is what it is. As others have stated, he needs experienced pulmonology and diagnostic tests, PFTs, etc.
If a true diagnosis, most manage well on lifestyle adjustments, maintenance meds and eventual supplemental O2, should it progresses to that point. Not a picnic, but manageable.
There are two huge issues that largely go unaddressed:
1) premature maxing out of maintenance treatment. Whether it be meds or supplement oxygen. Patients do better, longer, when they are able to maintain the bare minimum treatment. Easier with meds. But patients really need to be diligent not to escalate supplemental oxygen if not absolutely necessary. One cannot put that genie back in the bottle. Once someone goes from 1-2 lpm at pulse to 3-4 lpm at continuous flow, they are not going back. Which brings me to the other issue…
2) anxiety. This is a viscous circle and/or negative feedback loop common with copd patients…and probably the number 1 reason people prematurely max out their maintenance therapy. Controlling anxiety, whether with therapy, meds, etc is a must for best outcomes.
Once someone gets to point of frequent exacerbations requiring ER, hospitalizations, etc…it’s just not a good sign. At this point, expect 30-40% to stabilize back to baseline and death for the others within 3-5 years.
If a true diagnosis, most manage well on lifestyle adjustments, maintenance meds and eventual supplemental O2, should it progresses to that point. Not a picnic, but manageable.
There are two huge issues that largely go unaddressed:
1) premature maxing out of maintenance treatment. Whether it be meds or supplement oxygen. Patients do better, longer, when they are able to maintain the bare minimum treatment. Easier with meds. But patients really need to be diligent not to escalate supplemental oxygen if not absolutely necessary. One cannot put that genie back in the bottle. Once someone goes from 1-2 lpm at pulse to 3-4 lpm at continuous flow, they are not going back. Which brings me to the other issue…
2) anxiety. This is a viscous circle and/or negative feedback loop common with copd patients…and probably the number 1 reason people prematurely max out their maintenance therapy. Controlling anxiety, whether with therapy, meds, etc is a must for best outcomes.
Once someone gets to point of frequent exacerbations requiring ER, hospitalizations, etc…it’s just not a good sign. At this point, expect 30-40% to stabilize back to baseline and death for the others within 3-5 years.
Posted on 2/10/25 at 12:39 pm to Mid Iowa Tiger
There are treatments, but no cure as of yet. treatments are to maintain current level so it progresses slower. Usually a weekly IV treatment. I just participated in a feasibility study with a company that is trying to do home based treatment kind of like a diabetes pump. It can show up from kids to adults.
Mine fortunately no symptoms right now and found out by happenstance. It is a genetic disorder and there are different levels and phenotypes that effect people in a different way.
UT Health Tyler just happens to be an Alpha 1 research facility and Dr. Megan Devine is incredible. Your GP should be able to order blood work to check. As another poster stated, it is very rare and most physicians will not be able to answer many of the questions you have about it. alpha1.org is a good resource to read up on it.
Mine fortunately no symptoms right now and found out by happenstance. It is a genetic disorder and there are different levels and phenotypes that effect people in a different way.
UT Health Tyler just happens to be an Alpha 1 research facility and Dr. Megan Devine is incredible. Your GP should be able to order blood work to check. As another poster stated, it is very rare and most physicians will not be able to answer many of the questions you have about it. alpha1.org is a good resource to read up on it.
Posted on 2/10/25 at 12:59 pm to clickboom
Thanks. I will be checking into it.
Posted on 2/10/25 at 1:10 pm to Aubie Spr96
quote:
My older brother died yesterday. The above paragraph is exactly what happened with him.
i'm sorry for your loss...
Posted on 2/10/25 at 1:27 pm to Jim Rockford
A subject I actually know quite a bit about as I worked for the leader in portable oxygen concentrators as a D2C sales rep.
COPD is no bueno and many patients I worked with were lifelong nonsmokers. There’s no rhyme nor reason as to why people develop it. Smoking does seem to exacerbate and increase the likelihood of COPD developing. IF he is forced to use supplemental oxygen, bite the bullet and BUY a system that will meet his needs rather than renting through his insurance. Insurance rental provides only a minimum level of oxygen to the patient and most become homebound almost immediately because they are scared to run out of oxygen.
Buying the system will allow the patient to customize it to fit their needs. It isn’t cheap ($2-5K), but it is absolutely worth it.
Reach out to me if I can help navigate for you. If they do go on oxygen, their expected life span is about 2-5 years.
COPD is no bueno and many patients I worked with were lifelong nonsmokers. There’s no rhyme nor reason as to why people develop it. Smoking does seem to exacerbate and increase the likelihood of COPD developing. IF he is forced to use supplemental oxygen, bite the bullet and BUY a system that will meet his needs rather than renting through his insurance. Insurance rental provides only a minimum level of oxygen to the patient and most become homebound almost immediately because they are scared to run out of oxygen.
Buying the system will allow the patient to customize it to fit their needs. It isn’t cheap ($2-5K), but it is absolutely worth it.
Reach out to me if I can help navigate for you. If they do go on oxygen, their expected life span is about 2-5 years.
Posted on 2/10/25 at 1:32 pm to Floyd Dawg
Insurance companies do not like to rent oxygen. Get out here with that. It’s much cheaper for insurance to just straight up buy home and portable 02 concentrators than it is to rent.
The rental market is completely created and forced by the medical field and local oxygen providers. They make their money on rentals and charge costs of $100 - $400 a month, if not more, to provide the equipment and service it. It’s a racket.
The problem for insurance is that there are very few alternatives when a local 02 provider refuses service for purchased units. 02 suppliers don’t help things because they usually don’t offer any ongoing maintenance or easy repair programs. Maintenance is required on most units and while not overly complicated, many patients are not in a position to do this themselves. They are also not in a position to pack up their unit and get it shipped off for repair even when insurance is picking up the tab. In addition, if operating a concentrator, you got to have a back-up system for unit failure, power loss, etc…
Edit - portable systems are easier to purchase with insurance and are worth it if covered. But most patients needing a portable system will also require the home concentrator as well and that is where the local 02 providers screw everything up to make a buck.
Also, as things progress, portable systems get fairly useless. If one can stay at 1-2 lpm on a pulse setting, they work pretty well with decent enough battery life. Anything after that, patient’s generally move on to canisters and that’s where the costs skyrocket.
The rental market is completely created and forced by the medical field and local oxygen providers. They make their money on rentals and charge costs of $100 - $400 a month, if not more, to provide the equipment and service it. It’s a racket.
The problem for insurance is that there are very few alternatives when a local 02 provider refuses service for purchased units. 02 suppliers don’t help things because they usually don’t offer any ongoing maintenance or easy repair programs. Maintenance is required on most units and while not overly complicated, many patients are not in a position to do this themselves. They are also not in a position to pack up their unit and get it shipped off for repair even when insurance is picking up the tab. In addition, if operating a concentrator, you got to have a back-up system for unit failure, power loss, etc…
Edit - portable systems are easier to purchase with insurance and are worth it if covered. But most patients needing a portable system will also require the home concentrator as well and that is where the local 02 providers screw everything up to make a buck.
Also, as things progress, portable systems get fairly useless. If one can stay at 1-2 lpm on a pulse setting, they work pretty well with decent enough battery life. Anything after that, patient’s generally move on to canisters and that’s where the costs skyrocket.
This post was edited on 2/10/25 at 2:01 pm
Posted on 2/10/25 at 1:58 pm to NOLATiger163
quote:
COPD include chronic bronchitis
* Drugs like bronchodilators can certainly help.
Sounds like what he has, considering that he's been coughing for the past few months.
Steroids will also help with his condition.
Posted on 2/10/25 at 2:07 pm to pussywillows
quote:
my stepfather had advanced copd...he smoked his entire adult life, and refused to quit even after he was diagnosed...he even lied to his doctor in front of me, and i told the doctor that he was, in fact, still smoking...we ended up in the ER every 3-4 months for over a year, and he was admitted each time to have breathing treatments/meds...the last time, the ER doc kept him on oxygen until his oxygen level got above 90%, then sent him home...he was dead within 36 hours...
i think people who are willing to make changes in their lifestyles can get by with COPD, but otherwise, it's not ideal...
My mother has COPD. She has smoked her entire adult life. And she still smokes. She was diagnosed almost 10 years ago. She is now 82, and still smokes a pack a day.
It's sad knowing what will happen over the next year or 2, as her decline over the past year has been bad. She still functions and gets around fairly well, but little things like not going to a swim meet to watch her grandson swim because she can't walk up the bleachers is simply sad. I have given up arguing with her about it.
Posted on 2/10/25 at 2:10 pm to Jim Rockford
Huh who knew those coffin nails were bad?
Dang hope he breezes through this.
Dang hope he breezes through this.
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