COPD360social welcomes new member najose who joins 63,251 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

โ˜€ Wishing you a great week ahead, friends!

As we roll into another stretch of record heat, donโ€™t forget to take care of you! Come back and check in with us during the week--weโ€™d love to hear how you're doing! ๐Ÿ’ฌ

Even better? Share your favorite summer moments so far--whether it's a sunset, a shady porch view, or your furry sidekick keeping cool. Can you believe weโ€™re already halfway through the season?!? ๐Ÿพ๐Ÿ“ธ

Stay cool, stay strong, and letโ€™s ride the wave into a week of easier breathing! ๐ŸŒŠ๐Ÿ’™

3 days ago

45yrcopdasthma

45yrcopdasthmaanswered the question Regrets

Are you in pain with every breath? I am. I'm not handing in my chips yet. Heck I got out for a bodyboard yesterday. Got pitched onto almost dry reef. I don't bother with protective kit anymore, IF I go out doing that I'm ok with it. But I'll be damned if …
Ken Benson-California Lung Health Advocate and State CaptainJD85JeanO53 also answered the question Ken Benson-California Lung Health Advocate and State Captainand 2 others also answered the question

8 minutes ago

Hewolf

Hewolf

so i learned i have significates lung capacity loss. and official diagnosed copd. so at what percentage do they start slapping me on o2.

28 minutes ago

JD85

JD85asked the question: Has anyone participated in a clinical trial for COPD?

Curious and looking to discuss participation in clinical trials etc

48 minutes ago

Jsw0209

Jsw0209

Hello, 


   My husband has COPD with 20% lung function and I am his caregiver. I have a few questions if this group can humor me.  I have not been able to find these answers anywhere else.   Hopefully this brain trust can help!


1.  anemia.   My husband was recently hospitalized for anemia and received 2 units of blood which was like a super charge for him.   He has been around the 9.0 HGB range but dropped to 8.0 when hospitalized.  He was 11.7 after the transfusion and was able to care for himself and move about the house.   He is now sliding back into the 10.0 range and we can see the negative impact on his breathing.  His GP said it was not low enough to treat and his pulmonologist focuses on lung function only.   I am coming to feel that with 20% lung function he needs near normal hemoglobin.   Has anyone else faced this battle?  What have you done? 


Home oxygen concentrators:  We have a floor model oxygen concentrator with a 50 foot hose.   When EMS last came for his short of breath they berated me for the 50ft hose.  They said he won't get enough oxygen with anything over 10 feet.  That is impossible to have any mobility with a home unit.   I have pored over the owners manual, there is no mention of hose length.   The medical supply company did not have recommendations either but they routinely deliver multiple 50ft hoses.   What experience do any of you have?  


Thanks all for your time in reading this.  


Jayne

1 hour ago

Wilf

Wilfanswered the question What is the new rule about lithium ion batteries and flying with oxygen?

"The Inogen One G5 double (16 cell) battery is 188.8 watt hours." This is incorrect: "Our [Inogen One] G5 extended battery is labeled as '92.2 Wh + 92.2 Wh.' This DOES NOT mean the total is 184.4. There are two separate battery packs that are discrete …
HIcopd - Hawaii State CaptainKen Benson-California Lung Health Advocate and State Captain also answered the question HIcopd - Hawaii State Captainand 1 other also answered the question

2 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHow about a nice helping of Pork and Beans? Okay...here you go!
My friend Jill's kitties, asleep on her son's bed.

5 hours ago

JeanO53

JeanO53

Praying for those in our community who live on the west coast and in Hawaii.
Stay safe everyone ๐Ÿ™

6 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captain

I haven't felt emotionally well the last few days. My brother Pete passed away Friday night, unexpectedly.  I already had plans to fly to see him and my sister-in-law and my sister and brother-in-law who all live in the same town in Washington State in mid August for a week.  The last time I saw him was in 2019.  He apparently was in worse health than he let either me or my sister know.  And he smoked like a chimney, even knowing all about my COPD.


At the urging of my sister-in-law and sister, I'm not changing my flight.  When I'm there we'll have a little ceremony and scatter his ashes in the Puget Sound because he wanted to swim with the whales.


I'm just upset with myself that I didn't go out there between 2019 and now.  He wouldn't travel, and so it was up to me to be the one to make the effort, and I didn't, until it was too late.  Of course, we talked on the phone, but it's not the same.


So, I guess what I'm trying to say is to do what you can to stay in touch with your family.  One day they may not be there.

6 hours ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question Sorry for all my negative venting . Hereโ€™s something positive ๐Ÿ’•

Thank you for rescuing him! Some years back, we rescued to newborn kittens, and took turns bottle feeding them every 3-4 hours. Got them to the vet for vaccinations and checkup, later to be spayed. They are now 9 year old healthy kitty sisters who are …
Ken Benson-California Lung Health Advocate and State CaptainJD85Caroline West Virginia State Captainand 3 others also answered the question Ken Benson-California Lung Health Advocate and State Captainand 5 others also answered the question

8 hours ago

JD85

JD85answered the question Anyone hopeful about possible regenerative therapies in near future?

REGEND001 This is the P63+ cell product, it's currently in active phase 2 trials in China, I know Harvard are also looking at this, nothing from the UK side yet though. Looks like the trials should complete this year, with results next year I presume.
Karen Deitemeyer - Florida State Captain45yrcopdasthmaKatwand 1 other also answered the question Karen Deitemeyer - Florida State Captainand 3 others also answered the question

8 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

LEMONY CUCUMBER COUSCOUS SALAD1 1/2 cups pearl couscous, cooked, rinsed in cold water, and drained 3 tbsp. lemon juice1/2 tsp. lemon zest2 tbsp. olive oil1/4 tsp. garlic powder 1/4 tsp. salt1/4 tsp. freshly ground black pepper 1 English cucumber,...

8 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWhether your day is starting out right side up, or upside down...make it a good one! 
Keep on smiling, friends, and have a happy Wednesday! ๐Ÿ˜€

13 hours ago

JD85

JD85answered the question Terminology on CT Report

I agree, it doesn't help that GPs have contradicted each other, the terminology is poor and this was an Incidental Find on a CTPA, it's not as detailed as a HRCT so this is possibly why the terminology is vague. I don't smoke and haven't for years, I …
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

14 hours ago

mony072

mony072answered the question Is anybody using either azithormycin or roflumilast for phlegm control ?

Hi Richard, Thanks for sharing your experience,really helpful. I have heard of others finding relief with low-dose Roflumilast too especially when standard doses cause side effects. It is frustrating when doctors overlook these options but glad you …
Richard DJNana49David Mannino, MD (Chief Medical Officer, COPD Foundation )and 2 others also answered the question Richard DJand 4 others also answered the question

19 hours ago

Community Announcements

Community Announcementsadded a new article Dr. Krithika Rao

Welcome our newest COPD Foundation Captain!

23 hours ago

Redd

Redd

Hey everybody just got out of the hospital. Tennessee heat put me down. I am 9 years in this journey and my lungs ๐Ÿซ are 126 years old

23 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿพ Soooโ€ฆ Jasmine missed Fluffy Friday last week--but she had a solid excuse: she was off getting her hair done and came back looking fabulous! ๐Ÿ’โ€โ™€๏ธโœจ

Meanwhile, Jagger stayed home rocking his โ€œI woke up like thisโ€ look (zero grooming, 100% attitude ๐Ÿ˜‚). But donโ€™t worry--heโ€™s heading in for his own spa day this Friday, so things might get a little extra fluffy around here!

1 day ago

JD85

JD85answered the question Emphysematous Changes On CT Incidental Find

FYI I have stopped the Propranolol after only a day, side effects include increased mucus, coughing, chest soreness and tiredness, basically all the things you don't want!
mony072brydyKaren Deitemeyer - Florida State Captainand 2 others also answered the question mony072and 4 others also answered the question

1 day ago

FranCon

FranCon

I have been taking medications for COPD for over 10 years. I have been taking Wexela 250 twice a day and Albuteral on an as needed basis. The need for the Albuteral seems to be needed more often in the spring when my allergies pop up. So overall I have been mangeing fairly well. Recently I was perscribed to take Spiriva additionally. From what I have read these medications cause eye headaches, red eye, dry eye and blurryness. Do I have to live with this or is there another alternative?

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

DELICIOUSLY GOOD DIP FOR FRESH FRUIT1 kiwi fruit, peeled and diced1/2 cup frozen raspberries 1/2 cup honey8 ounces low-fat vanilla yogurt Assorted fresh fruit for dipping, such as strawberries, grapes, pineapple, watermelon...Combine the kiwi fruit,...

1 day ago

JD85

JD85asked the question: Terminology on CT Report

Can a medical professional actually say what "background emphysematous changes" on a Computed Tomography Pulmonary Angiogram (CTPA), does it mean destruction, I'm getting conflicting information from my GPs.

1 day ago

Grace2024

Grace2024asked the question: Sorry for all my negative venting . Hereโ€™s something positive ๐Ÿ’•

with all my Negative post hereโ€™s one good thing that has happened Iโ€™ve been caring for a sick puppy around the clock who wouldnโ€™t eat and heโ€™s made a remarkable turnaround and his strong and eager to eat, he kicks his little feet in happiness 💕 Iโ€™m …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainSending wishes for a peaceful, easy breathing day! Happy Tuesday, friends! ๐Ÿ˜Š

1 day ago

JD85

JD85answered the question Stem Cell Research Finally Cures Mild Emphysema in Humans

Fisetin, still mixed reviews on this and some studies support it and some don't, if you search Mayo Fisetin Protocol you can find all the details, personally I have incorporated it in to my supplement routine, feel tired during but a few days later …
Richard DJWho Me ?DebbieB.-Connecticut State Captainand 4 others also answered the question Richard DJand 6 others also answered the question

1 day ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State CaptainWe have genetic COPD but COPD does not have us.

1 day ago

Grace2024

Grace2024asked the question: Regrets

I hate living with this illness . I did this to myself thinking stupidity one day I would just stop smoking but I didnโ€™t know it was a progressive disease and could pop up later even if you did stop (so stupid of me thinking this ) I lived a fun life and …

1 day ago

Rambo

Rambo

Doing ok . Have dull pain in my chest for last 3 days . I am currently on 2 liters portable oxygen . 

1 day ago

Danforth55

Danforth55Do all pulmonologisists recommend or schefule lung ct scans every year? Mine does but the findings seem benign. I have no symptoms 55 yr smoker.
Still has another schefuled again in november. A second pulmonologist says pfts are normal? 



MPRESSION: Mild chronic interstitial disease. No significant emphysematous changes. No acute findings.

Images and interpretation personally reviewed by: Douglas A. Jones, MDNarrativeHISTORY: Emphysema.

TECHNIQUE: Helical imaging of the chest without contrast.

COMPARISON: Chest CT performed 2/4/2024.

FINDINGS: The lungs again demonstrate mild subpleural interstitial disease. No acute infiltrates. No significant emphysematous changes. Small mediastinal lymph nodes are unchanged. The heart demonstrates extensive coronary artery calcification. No pleural or pericardial effusions. Visualized portions of the unenhanced upper abdominal organs are unremarkable. Mild spondylotic changes.

2 days ago

David Mannino, MD (Chief Medical Officer, COPD Foundation )

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question Supporting a Loved One Who Smokes with COPD

First- understand that cigarettes are not addicting by accident. The tobacco industry ( and vaping industry) has designed them to be as addicting as possible. There are several options to help people stop smoking ( medications, hypnosis, behavioural …
45yrcopdasthmaCoach Brandon - Community Manager also answered the question 45yrcopdasthmaand 1 other also answered the question

2 days ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.