Community Announcements

Community AnnouncementsProper use of your continuous positive
airway pressure (CPAP) therapy, or sleep apnea mask, is critical to staying healthy
with COPD and obstructive sleep apnea (OSA). 


 As many as 4.5 million individuals
live with both COPD and obstructive sleep apnea, or “Overlap Syndrome”. If you
live Overlap Syndrome, you may be eligible to join our free online classroom. Reserve
your seat today and help make a difference!

https://www.o2verlap.org/portal?REFER=COPD360Social1


2 hours ago

Apax

Apax

My dad has been on oxygen only at bedtime for a long time. He was currently in the hosp because of a heart attack. He was sent home with instructions per pulmonologist to wear the oxygen 24/7. The family dr explained to us that COPD is actually getting oxygen in, but not being able to get all of the carbon dioxide out. I’ve noticed since being on the oxygen 24/7 it seems that he’s having a harder time breathing and using his inhaler more. It doesn’t make sense to me to put more oxygen in when he can’t get rid of the carbon dioxide to begin with. When he has a harder time it’s not on exertion, and we’ve used the pulse ox and it’s saying his level is 94-95

40 minutes ago

Rebecca Roy

Rebecca Roy

 I just got put on oxygen 24/7. The thought of being on it 24/7 is overwhelming and now I’m doing it and it’s frustrating. My tubing gets caught on everything. I live in a two-story house so I have to connect two 50  tubes together. My question is I use Lincare for my oxygen and they said I have to be on tanks for a month then they will give me a test. I was wondering is there another company that I could get my oxygen from that would not make me go through this tank ordeal. I also babysit my one year-old grandson three days a week and it’s very difficult lugging him and the tank and the baby bag. Sorry for complaining so much I’m just very overwhelmed.

2 hours ago

edpe77

edpe77answered the question abg test

So Mike, are you saying that if one can bring O2 > 90%, with PLB etc he is probably not a CO2 retainer. I'm seeing my pulmo next week to get either a "dos-pack" or a predisonme regiment. Some dys just walking across the room can cause OOB. I know …

2 hours ago

MikeUK

MikeUKcommented onShort of Breath After Eating

 I would just like to say that eating and swallowing uses muscles that need oxygen so >>> Once again, if you use supplemental oxygen, make sure you use it when you are eating! >>> and try raising you O2 to a higher dose before starting your food to...

2 hours ago

MikeUK

MikeUKanswered the question abg test

Hello lazy1 >>> your pulmo and Debbie are correct >>> I am speaking from 10 years caregiving only and believe a regular ABG test is essential ONLY IF you are COPD Stage4 and have been diagnosed as a CO2 RETAINER >>> ABG is not …

3 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question abg test

My impression is that it is not routinely done for most COPD patients. I had one a few years ago as part of a pulmonary exercise test which was done in a pulmonary lab in a hospital. The ABG was done by one of the senior respiratory therapist, not …

3 hours ago

Veronica61

Veronica61

In hospital at moment for what i thought was asthma attack and chest infection..xray shoes inflated lung so querying copd as stuggling to breath..had a blood test done no outcome yet...feel my life is over. I am 56 mom of 3 nan of 4 worried 

4 hours ago

lazy t

lazy tasked the question: abg test

I am noting some comments about abg test. My pulmo (whom I trust) says the abg is not a routine outpatient test and should be conducted after a hospital stay for exacerbation. What is your feeling on the test?

4 hours ago

Kelly Ohar

Kelly Oharcommented onSociety of Hospital Medicine COPD Implementation Toolkit

 Thank you for this, it looks WONDERFUL!!! ...

4 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Stuffy and Runny nose

That can be a tricky one to answer. I would certainly pay attention and if I felt my breathing get worse (stuffy nose aside) or felt it in chest, if I saw my O2 saturation drop, I would get myself to the doctor right away. What you should do is print …

5 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question New Oxygen Survey

There was no free response section. I have liquid O2 as well as a personally purchased POC. There were no survey options to talk about the liquid O2. I need 4 liters/min continuous for strenuous exercise. I use the liquid O2 to get this. I also use the …

5 hours ago

perkyH

perkyH

Just  joined this group and so happy to have done so!!! It made me realize how little i know about my COPD and the disease.  I was wondering if someone could make a list of all terms used by this group. Such as SOB- Short of breath.  I also think its terrific that you all know you number. I have no idea so i guess i will have to be talking to my doctor to learn these things.......Thanks Perky

6 hours ago

Waynster

Waynsteranswered the question Suffering from anxiety over possible emphysema diagnosis.

I was in your shoes 16 years ago. It is very easy to recall how scary it was. Everyone is different with symptoms so the timing and related health issues usually are not confirmed right away. Here's wishing you prevail with good breathing going forward …

6 hours ago

perkyH

perkyHasked the question: Stuffy and Runny nose

Of course i have COPD and i woke up yesterday with a runny stuffy nose. The mucus is clear........Do i worry about this or just take some medicine? Thanks

6 hours ago

Jimmy S

Jimmy SIf it’s available to you, get yourself to rehabilitation.
Different facilities have different payment arrangements. The one I
attend accepted my pulmonologist’s prescription and health insurance for
3 months. After that, I paid out-of-pocket as a “community member.” In any event, it’s the 2nd best thing I’ve done for my physical self. Quitting smoking was #1.

8 hours ago

melba1959

melba1959

Hi, I'm Melba and I am new here.  I am a caregiver for my husband and I am having a lot of trouble handling and accepting the way things are.  We have only been married for three years, and he starting getting sick less than a year into our marriage.  At this point he is unable to do much at all, and everything is up to me.  I feel like I was looking for a partner, but instead got someone else to take care of.  He can't do anything that involves any walking at all, but he gets upset if I want to go somewhere by myself.  He moans and sighs all the time like he is upset.  It especially hurts my feelings when he groans when I come into the room.  He says that he loves me but all I seem to do is annoy him.  We have not made love in over a year now.  I'm here to see truly how much of this is the COPD.  He has just gotten to take all the test at the pulminologist, but we have not gotten the results.  He will not let me go to the doctor with him but he either never asks all the questions, or he won't tell me.  He is still smoking.  I realize that he also is having a hard time accepting everything.  Any advise would be welcome. 

8 hours ago

  • NewestOldest
  • Stephanie Williams, RRTHi Melba1959 -
    I am glad you found this group - Welcome!
    It sounds like you are dealing with an awful lot of things that are causing you stress. Any of those things on their own would be stressful, but in combination I am sure you are under a lot of pressure.
    While I don't have a quick solution for you, I hope you will feel the compassion and understanding of the members of this group and that you will come here and share your feelings with us as often as you need to.
    Perhaps your husband is feeling overwhelmed with his new 'normal' and is feeling depressed and anxious. Anxiety can come out in a variety of ways - not always in ways that come to mind first. For people new to COPD, the fear of the unknown and uncertainty of the future can cause them to become withdrawn, angry, depressed, anxious, and a variety of other emotions.
    Maybe when he gets the results from his tests things will start to become manageable for him (and you).
    There are some great resources here - but especially the C.O.P.D. Info line. You or your husband can call that number and speak to a real human being who would love to talk to you and also to help get some educational materials sent to you. 
     
    Here is the number:  
    C.O.P.D. Information Line:1-866-316-COPD (2673)



    Hopefully this will be helpful!7 hours ago
  • MikeUK<br><br>Hi Melba>>> I must be blunt >><br>sorry >> your partner seems very selfish from what you say >>><br>does he use a computer??? >> how does he get his cigarettes ?? >> I<br>suggest he joins us here and let us chat to him OK? >>> he is clearly<br>worried about the future so definitely needs help from professionals is my<br>opinion >> and well done in caring for him >>> best wishes for a<br>long and happy future to you both >>> as Stephanie says >>><br>ITS GOOD TO TALK >>> UK Mike 😎[24/7 caregiver] and wife [stage 4 COPD<br>since 2009] >>> by the way I am also a real human being!!!  😏 keep smiling stay POSITIVE😆4 hours ago
Community Announcements

Community Announcementsanswered the question New Oxygen Survey

This survey is ending soon. If you haven't taken it yet, please take a minute to do so. Recent changes to what oxygen systems are available have drastically changed and no longer provide for the needs of our community. It takes just a few minutes to help …

8 hours ago

DanK

DanK answered the question Insomnia related to steroid use

Hello Kristen, I know you are better off taking anything with steroids, like prednisone, as early in the day as possible. I tried starting a course of prednisone in the evening once and was awake almost all night. Pharmacist said this was common with …

9 hours ago

Jane Martin

Jane Martinanswered the question Should peak flow meter result correlate well to FEV1 result?

Hello Dratsab, Thank you for this comment, its a good question. Actually, although both the Peak Expiratory Flow (PEF) and the Forced Expiratory Volume in the first second (FEV1) involve blowing out fast, they are not the same. The PEF measures flow - …

9 hours ago

Shamps (Sharon)

Shamps (Sharon)

Good Evening Gang,


Feeling very frustrated!!!  Am a medical marijuana patient and am not getting much relief from using the lozenges for all of the issues I am hoping it would help!!


I know a lot of former cigarette smokers, especially those with lung issues, have been vaping as a way to replace conventional cigarettes!!!  My question is, is it safe to vape medical marijuana with asthma that is very well under control (thanks to my chiropractor, only three asthma attacks in the past three years) and mild chronic bronchitis?


PS the pain in my windpipe sometimes feels like costochondritis and the only way to help with the pain is 3 advil every 12 hours!!

21 hours ago

Sharo

Sharo

SOB, finally went to sleep this morning 4:00 am, Predisone keeps me awake.Would I be better off to get off Predisone and and start using my Symbicort. ?  I tried to call my Doctor, had to leave to go to Dermatologist, had four moles Biopsied. so will try him tomorrow. Didn't get to exercise today, going to go do the treadmill. I have to talk to myself and count my Blessings.  Welcome Walr. Great group of people in here.

23 hours ago

Dratsab

Dratsabasked the question: Should peak flow meter result correlate well to FEV1 result?

The action of exhaling hard into a hand held peak flow meter seems identical to the action of exhaling when measuring FEV1.

23 hours ago

WolfTigerPoet

WolfTigerPoet

Hello Everyone,
How is everyone today?  I hope all is well with everyone.  I am still struggling with being on  o2    24/7.   I have stopped smoking.  I am on day 20 of being smoke free.  I don't have insurance right now, so that has been a major stressor for me.  Have a wonderful day everyone.
WolfTigerPoet

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Chest tightness and painful breathing when laying down

Hi Ed. Could it be that when we are active our oxygen flow is better? Maybe when we are laying down, everything slows down because we are not moving or doing anything.

1 day ago

edpe77

edpe77answered the question Chest tightness and painful breathing when laying down

While I don't experience any chest pain when I go to bed, SOB is always present. Prior to going to bed, I use the toilet, check O2, 94%. Walk the 15 steps to bed, lay down, now O2 is 88 - 90%. It takes a couple minutes of PLB to get my O2 up and …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Chest tightness and painful breathing when laying down

Thanks Mike. You are always very helpful! 😴😴😴

1 day ago

MikeUK

MikeUKanswered the question Chest tightness and painful breathing when laying down

Hi gang my wife has used a >> >>>>> Bed Back Rest <<<< for the past two years which really help This bed back rest is a simple support, a pillow raiser, to allow the user to sit up comfortably in bed. The angle is …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Chest tightness and painful breathing when laying down

When I lay down it almost feels like my airway "folds up". Very uncomfortable. I prop my self up on many pillows at night. Good maintenance medications help me get through the night so I am not waking up feeling extremely short of breath. It is very …

1 day ago

Snooze

Snoozeanswered the question Chest tightness and painful breathing when laying down

I should add - I've been to two pulmonologists for this particular issue, and both said it did not sound like a symptom of anything. I find that impossible because I've been diagnosed with both early onset emphysema and COPD. And I KNOW this has to do …

1 day ago

Snooze

Snoozeasked the question: Chest tightness and painful breathing when laying down

Hello. I'm super new to this group and I'm wondering if anyone shares my experience or has any insight. About a year and a half ago, I started to feel tightness across my upper back and deep inside my chest when I would wake up in the morning. It has …

1 day ago

muddleaged

muddleagedanswered the question Insomnia related to steroid use

I mentioned this to a friend when I was having the same issue. It was suggested that sleeping straight through the night is a new thing for humans. Here's an article that may be of interest: "Did we used to have two sleeps rather than one should we …

1 day ago

Sharo

Sharo

I was on earlier today, have been coughing some, finished my last Doxycycline, taking 10 mg predisone each morning exercised on treadmill at 1.2 for 15 min. was sob after, did PLB recovered pretty fast, but later had to use Albuterol/Nebulizer. I have used it 3 times today, the humidity is 93, raining some, Red Tide lurking around again. I didn't go out today at all. Used my Oxygen after I did my oximeter and I was 92/93. now after not using oxygen for several hours , its 93. Should I ask my Doctor to raise my Predisone , I have been takin it at 6 in the evening, maybe I need to take in  first thing in morning and  10mg again jin the evening? I hope I can get my Dr. , he is up North. Trying to hang in. This is my 4th day of exercising. Every thing on me sorta  hurts, loll.  

1 day ago

Samo

Samo

Has anyone had a lung transplant?

1 day ago

Samo

Samo

Emotionally I'm a mess. The Dr. told me I would be a good candidate for a lung transplant. I said I wanted to do it but I'm having second thoughts. I don't know much about it. I have been reading some about it and I'm scared and don't know what to do.

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHello everyone! My 6th wedding anniversary is coming up on Wednesday. We got married on 12/12/12 at 2 pm by a lovely 83 year old justice of the peace named Marilyn. My hubby had never been married at the age of 52, and he was scared out of his wits!!!! 

2 days ago

2cents

2centsanswered the question Insomnia related to steroid use

I have tried many concoctions thru the years. My problem was always in the way of staying asleep, never had much problem falling asleep. Melatonin works to get you to sleep. Tart cherry juice works because it has its own melatonin. I'm sure you've tried …

2 days ago

Kristen Willard

Kristen Willardasked the question: Insomnia related to steroid use

Any tips for taking on insomnia related to steroid use? Thanks!

2 days ago

Evie

Evieasked the question: Cellcept side effects

Hi all, anyone else on Cellcept having a side effect of being extra tired?

2 days ago

Sharo

Sharo

Hello, everyone , welcome Kathleen, a great group of people here. I am new here, however I am learning a lot of helpful things  from the people in here. Do anyone in here take prednisone? My Doctor told me too take it 2/5mg of morning. Does it make any of you depressed? I will be off of it soon. I will call my Dr. up North Mon.  Bill take care of yourself, I cannot take a Flu shot, I wear a mask and stay away from crowds. We all need you here. 

2 days ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Well I'm on another ten days straight at CVS, "tis the season", cold, flu and sinus season I mean as well as the holidays added on top of that. I read despite the deadly flu season of 2017 about  40% of adults do not get the flu shot? Hope everyone is doing well? 

2 days ago

MikeUK

MikeUKcommented onHope and Inspiration Through Goal Setting

 Thanks Jane excellent advice >>>> in the UK when anyone reaches 100 years old we can apply for a TELEGRAM from the King or Queen of England >>> SOOOOO >>> that is the MAIN GOAL for both myself and my wife >>> then it is onwards and upwards once we...

2 days ago

Sharo

Sharo

Hello to everyone,  So happy to have friends, who know what we go thru. 
and did my exercises today, had written down suggestions that Caroline, Thor, Jean, Bill and others. Thank you. I have been a little sob, went out to dinner and I had Seafood Bisque, and a few Shrimp, not fried,  and I feel like that may be why I feel SOB.  Shamps I would be honored to be your friend.







2 days ago

Shamps (Sharon)

Shamps (Sharon)

Hey Gang,


Feeling soreness and pain in my windpipe area  similar to when I infected it when I was 14 and had acute bronchitis and the flu at the same time...doc said it was from all of the coughing!! That was almost 40 years ago (yikes!! lol) and he put me on Darvocet!!  I hate the thought of taking narcotics for the pain but not even extra strength Tylenol is not helping!!


Does anyone have any suggestions??

3 days ago

Jean IA State Captain

Jean IA State Captainanswered the question PFT Test for COPD

A true PFT will use a little plastic box that feels and looks like the bubble that a helicopter pilot sits in; some people liken it to a phone booth, but it is a little plastic area that you sit in to do the testing. A Respiratory Therapist usually does …

3 days ago

Sharo

Sharo

TODAY, I am so positive, having met some wonderful people in here. and being able to know what some symbols mean, I'm learning. Thank You all.

3 days ago

Steve-o

Steve-o

Just joined this group and am hopeful it will provide some help and encouragement.  I was diagnosed with "Asthma or COPD and the beginning stages of emphysema" about 7 years ago.  Gave up smoking after my 3rd acute exacerbation.  I had no idea what was causing this at the time, but ended up in the hospital twice with very low oxygen.  I've been smoke free for over 4 years and have gained 30 lbs since quitting.   Still work a desk job and travel a lot.  Breathing is frequently difficult, but am on daily meds and have inhalers now (no oxygen).  Former soldier (Army).  I'm about to turn 60 and have little energy.  Talk to me.  

3 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Steve-oYou folks are all just wonderful.  Thank you so much for the tips, and especially for genuinely caring.  Seems like I've got some PT in my future.  I know that won't be easy for me, but I'll commit to the community here that I will give it a go. 2 days ago
  • MikeUKHi Steve-o >>> You stated >>>> "Former soldier (Army). I'm about to turn 60 and have little energy. Talk to me." >>> can you say if it was an army doctor that ORIGINALLY diagnosed your COPD 7 years ago??? >>> the reason I ask is it could be connected to your army service that started the problem such as inhaling contaminated air somewhere whilst on duty OK? >>>> I am always curious of the causes of COPD as we live in a very contaminated world that is slowly being destroyed by Greenhouse gases >>>> please let us know more about this as you need us to talk to you,,,,, and we need more info for us to learn together OK? >>> Best wishes >>> keeping fit is good but we cannot all stay young🏋🏊🏃>>> UK Mike😎 1 day ago
  • Steve-oHi MikeUK - I was already out of the Army when I was diagnosed.  I attribute the disease to my smoking.  I smoked a pack a day, starting at the young age of 15.  You know, I always thought that if I ran frequently while I was in the Army, that would protect me from lung disease.  I now understand how foolish that thinking was. 12 hours ago
Jimmy S

Jimmy SHope everyone is having a breathe easy start to their day.  Have a nice day everyone.

3 days ago

DanK

DanK answered the question Anyone using Trelegy and have a side effect related to hearing?

i’ve been using Trelegy for about nine months now and haven’t had any side effects like you describe.

3 days ago

thor159

thor159

I think my pulmonary hypertension is causing soreness in my sternum. It’s difficult to get my breath in the early morning starting around 0400. The pain seems to linger most of the day.

3 days ago

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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. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.