Bill Clark - Community Manager

Bill Clark - Community ManagerWe know that nebulizers are the cornerstone of treatment for chronic lung conditions such as COPD, bronchiectasis, NTM, and asthma. The COVID-19 pandemic has brought about new questions and concerns about using nebulizers in health care clinics or hospitals and for some, even at home. The COPD Foundation has partnered with academic experts, industry partners, and other stakeholder groups to create the COPD Foundation Nebulizer Consortium (CNC) to develop research and education practices related to safe nebulizer use. Join us this Wednesday, January 27, 2021 at 7:00 pm EST to learn more about the CNC and how it can benefit those living with chronic lung conditions as well as the health care providers caring for them. We want to hear from you and so have built in time for a live question and answer session. Mark your calendars and join us

here.

2 days ago

BlairT

BlairTanswered the question How To Use a Spirometer?

Interesting idea PamK. I haven't thought about getting a spirometer at home. I just rely on the readings I get every year or so from a respiratory tech. I 've seen a few comments on this network that getting consistent results can be tricky, and that we …

moments ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Check in - Can Pets Inspire Us?

Just have to say this::: I love you, Gimlet!! 💙💙💙

26 minutes ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Check in - Can Pets Inspire Us?

We didn’t pick Gracie, she picked us. When we first saw her, she was in the Boyd County Animal Shelter. We were there looking for a companion for George after the loss of two of our other dogs. When I first spied Gracie, she was in a little pen and was …

26 minutes ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Check in - Can Pets Inspire Us?

Can pets inspire us? Well, of course they can!!! So can outdoor animals and outdoor birds! When you have a pet, you are never alone. Neither is your pet. You will be inspired to care for your pet, as though he or she were your child. You will learn to …

28 minutes ago

Kristen Willard

Kristen Willardanswered the question Check in - Can Pets Inspire Us?

All of your notes here made me tear up. I agree wholeheartedly; animals make our lives richer and full of love. I'm inspired by my two geriatric pets who both have health issues - they persevere and are somehow never grumpy in the face of pain and …

1 hour ago

Community Announcements

Community Announcementsadded a new article Holy Cross Health and COPD Foundation Establish Respiratory Navigator and Peer Coach Partnership for People with COPD and Related Lung Conditions

FORT LAUDERDALE, FL – Holy Cross Health and the COPD Foundation are pleased to announce the establishment of the Respiratory Navigator and Peer Coach Partnership. Funded by Mr. Herb Yardley, the partnership will launch a pilot program designed for individuals with chronic obstructive pulmonary disease (COPD) and related lung conditions who are hospitalized for exacerbations (flare ups). The program aims to assist patients in the post-acute phase and support their self-management at home.

COPD is a debilitating respiratory condition affecting more than 30 million Americans and 1 million individuals living in Florida. COPD is the 4th leading cause of death in the US and a leading cause of disability. Although COPD is mostly a preventable and manageable chronic condition, low public awareness of the condition and its symptoms often leaves those newly diagnosed unsure how to best manage their care.

Recognizing these challenges, the collaboration between the COPD Foundation and Holy Cross Health has been built to leverage both partners’ resources and strengths. The COPD Foundation focuses on empowering and engaging the COPD community by delivering hope and valuable educational resources to individuals with COPD and their families, so they can take positive steps to lead meaningful and productive lives. The existing Holy Cross Health COPD Navigator program has reduced readmission rates for individuals with COPD by almost 50% by using a dedicated team of health care professional “navigators” who follow each patient through their recovery journey.

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6 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainGood morning, friends! Hope your day will be a great one! 😁
I'd like you to meet a close friend. Her name is Girlie! She likes to play peekaboo with me, believe it or not! 😝 She loves fruit and grain bars. She takes one from my hand. 

8 hours ago

CraigCOPD

CraigCOPDasked the question: Should I mix powder sodium ascorbate with distilled water in my nebulizer

I have COPD Should I mix powder sodium ascorbate with distilled water in my nebulizer?

15 hours ago

edpe77

edpe77

My tooth extraction is still giving me a problem. Initially I had no issues, followed the discharges to the tee. Then got what seemed like sinus infection. Self treated it with a z-pack. That seemed to clear it up. Around that time I "caught" a cold, which may have masked another infection. Now my check bone appears swollen. I sent my Dr a note this morning, and will call for an appointment. Another sinus infection is easy to address, however I'm more concerned about a bone infection.  I'll keep you posted.  Remember as COPD'ers we already have comprised systems and must be extra vigilant.  //ed

17 hours ago

Copd31

Copd31

hello everyone,im little desperate here and i really need your opinion on this.last week ive done the xray to my chest and the result was Initial copd.yesterday i had the Pulmonary test and the result was shocking too.VC IN 81 FVC 89 FEV1 83 Fev1%F 93 and the Pulmonologist said this is not copd!! he even said he doesnt know why the results from the xray came possitive to copd ,the lungs look very normal.ive lost 6kg in one week ,my mother is depressed and not talking anymore ,what should i do?

1 day ago

JeanO53

JeanO53answered the question Check in - Can Pets Inspire Us?

Over the years I've lived with a variety of pets, including cats, dogs, and parakeets, however only one of them was really mine. Her name was Edith Ann, named after both the Laugh-In character and Betrand Russell's fourth and last wife. She was adopted …

1 day ago

das23

das23answered the question Check in - Can Pets Inspire Us?

My experience with pets comes through my significant other. Her son got a dog a couple of years ago and after he was close to a year old we started taking him on our hikes. It is the coolest thing just watching him move up and down the trails. He'll run …

1 day ago

Caroline

Carolineanswered the question Check in - Can Pets Inspire Us?

My black lab mix Albert is my age or older in dog years. I have been inspired by him. He has arthritis, but he still does all of the things that he used to do. He has just found a different way of doing them. On days when I hurt and do not want to move …

1 day ago

DanK

DanK answered the question Check in - Can Pets Inspire Us?

We had to put down our two pups we had for sixteen years last August. We still miss those little guys so much. They brought so much love and happiness into our lives

1 day ago

edpe77

edpe77answered the question Check in - Can Pets Inspire Us?

When my kids were young we couldn't have pets, because my ex said they were allergic to animals. Since the divorce I've had pets continuously in my home, and as soon as my daughter married Brittany was our "surrogate grand baby." She too has had pets …

1 day ago

DanK

DanK answered the question Should HCP be Primary Care or Pulmonologist?

I agree with the others. I would get a second opinion from another pulmonologist. If your PCP prescribed a three part powder it most likely contains a corticosteroid as one of the ingredients. Steroids are great when you need them but should be avoided …

1 day ago

Ken Benson-Ca. state captain

Ken Benson-Ca. state captainanswered the question Check in - Can Pets Inspire Us?

According to Merriam-Webster the word inspire means "to influence, move, or guide by divine or supernatural influence or action." I'm sure I could use that word for the cats and dogs I have had in my life but a word I would use before that is compassion …

1 day ago

Jane M. Martin

Jane M. Martinasked the question: Check in - Can Pets Inspire Us?

Hello Friends. Our question for this week is a bit furrier than usual. It's about pets we may have had in the past, or those that may be in our lives now. In addition to being good company, can pets actually inspire us? Thank you for letting me share …

1 day ago

Ken Benson-Ca. state captain

Ken Benson-Ca. state captainTuneful Tuesday toe tapper.
https://www.youtube.com/watch?v=921CsfhKzqw

1 day ago

Ken Benson-Ca. state captain

Ken Benson-Ca. state captainThis read is well worth the time.  https://imprimis.hillsdale.edu/sensible-compassionate-anti-covid-strategy/?utm_term=emailclicks&utm_campaign=imprimis&utm_medium=housefile-email&_hsmi=98690753&_hsenc=p2ANqtz-_xe80zs8cl4L4yxqedRiKJBioLc0HtRaXreAOoVKibBOVeEKMTdsuAkphFV-dPNdPYLGyp-ML-k6rFLz-2vrWKdYAm3A&utm_content=SensibleAntiCOVIDStrategyOCT&utm_source=email

2 days ago

JeanO53

JeanO53Tuneful Tuesday - For all the old hippies out there...  😉

https://www.youtube.com/watch?v=WANNqr-vcx0


2 days ago

Kbrann73

Kbrann73answered the question Should HCP be Primary Care or Pulmonologist?

Is the 3 part powder Trelegy by chance ?.I just got diagnosed as having mild copd also(emphysema) and was given a sample and rx of Trelegy. I was told on a recent post of mine that this particular drug has a steroid and is generally not prescribed to …

2 days ago

Catfinger77

Catfinger77

Hello everyone. I haven't been on here for the last year.  I said I would get back if when I had a valve placement procedure done, and I had one about five months ago now. I have definitely felt better. They put in four Spiration valves into my upper left lung.  I had my first PFT done last week and my pulmonologist reviewed it and said he was very pleased with the results. My lung function has improved significantly and my lung volume has gone down. My FEV1 has increased from 29 to 35, which is 20%, about what was expected for a good result. I haven't had any side effects of any kind nor have I had any exacerbations this year, so I am also pleased by the result. I hope my tale helps someone. 

2 days ago

Hacksawcats

Hacksawcatsanswered the question Anyone have experience of a breathing aid called AirPhysio Global

Anyone had any further expereince of this?

2 days ago

Pam M.

Pam M.

I just wanted to pass along something that happened to me yesterday and see if anyone else has had the same experience. With my COPD and Emphysema I have been hospitalized previously for a condition known as hpercapnia. This occurs when too much CO2 accumulates in your blood. The first time it happened I had fallen asleep and my husband could not wake me up, the next thing I know I wake up in a hospital bed. Yesterday, I went to a doctors appointment and excited because it was the first time I had been out in A WHILE, I hit Barnes and Nobles (one of my favorite places) to purchase a new bible. I then stopped at Rite Aid on my last leg home. I began at Barnes and Noble to feel a little light headed and disoriented. By the time I got home and changed and sat for a cup of coffee it was worse. I was trying to explain to my husband what I was feeling but if you have never felt it it is hard to explain. I told him it reminded me a when I use to to LSD and mushrooms in the 70's but he never did that so that description wasn't working. I was laughing so hard.  Oh, and yes I was a hippie back in the day!! Anyway I began to realize that I had been wearing my mask for quite some time. Often when I'm out I have to pull the mask away from my face because I find it very hard to breathe.  Then I realized that what I was feeling was what I felt when I had the hypercapnia. So I will make an appt. to see my pulmonologist but in the meantime I think we with lung disease should be careful when we wear the mask for too long. I was breathing hard yesterday and with the mask on I was technically re-breathing my own air and I am not sure that is safe for us. Does anyone else have this issue or has there been an article that I perhaps missed. Hope everyone has a blessed day!

2 days ago

  • NewestOldest
  • JeanO53Hi Pam M.​ - Definitely contact your doctor.
    Based on everything that I've read, wearing a face mask does not increase level of CO2 in the air we breathe.  This is especially true with cloth face masks. 
    I occasionally will feel short of breath when I'm wearing a face mask.  When that happens, it's usually because I'm breathing too fast.  Slowing down and focusing on pursed lip breathing usually resolves the issue for me.2 days ago
  • das23Hey Pam M......I was also a Hippie on LSD. Remember what they told us about "flashbacks"----Maybeeee???  Just kidding!! ---I agree----Call your Dr. --Hope you get this resolved🙏✌2 days ago
  • LeslyMask wearing is very difficult for me especially if I have any phlegm in my lungs. I cannot go to the supermarket unless I've spent as long as it takes to cough it all up beforehand. A handicap to be sure.4 hours ago
Jean IA State Captain

Jean IA State Captainanswered the question Should HCP be Primary Care or Pulmonologist?

I'd find a pulmonologist who does more than diagnose and turn the patient loose. So you do need a pulmo who can prescribe meds appropriate for where your husband is in the disease progression and educate him on the kinds of things he needs to do to help …

2 days ago

PamK

PamKasked the question: How To Use a Spirometer?

I want to start using a Spirometer at home to try to improve my lung function. What should my target number be? Any

2 days ago

Tina M Moyer

Tina M Moyer

Feeling a lot of concern and anxiety. What do some of you think about the COVID vaccine? Are some of you going to get it? I work in the public and I am getting pressure from my family to get it. I am just having concerns i am not sure why I get the flu shot every year. Un easy feeling of not know what can happen such as side effects and with all my health issues. i reached out to my pulmonary and hope to hear back from her. If you have any feedback would appreciate it. Just need a little assurance bad enough i am scared and covid has my anxiety high my mom in a nursing home had people at work getting it and i  just do not get why i am hesitant
My conditions are copd emphysema , high cholesterol, psvt ( fast heart beat) , degenerative disc disease, arthitis in the knee , acid reflux and pretty certain auto immune disease celiac getting a biopsy on my small  intestine Feb. 15th to clarify  and I also was confirmed by a biopsy i have Dermatitis herpetiformis a rash that itches and burns and is associated with celiac. 


Really sorry to bother you al. I go on social media and such down comments about everything and i read an article some one got the vaccine and died and another had convulsions i guess the social media is playing a huge factor just want some concrete info. Thank Tina. I am most always a good advocate and i am a bit stuck on this

2 days ago

thai

thai

my husband diagnosed copd end of 2020,he is only 43. i was so worried everday , keep searching information about it , and i am so scared, because my grandpa was copd in his 60s , he dies at 70s , i know how scary it is , and i have no one to table about it , until i find here , i feel i see hope here , we are all in this together 

2 days ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Should HCP be Primary Care or Pulmonologist?

Pulmonologist are better educated in the lung diseases Mine is 100 miles away as my other specialty but in town my PCP helps if I need him.

2 days ago

das23

das23answered the question Should HCP be Primary Care or Pulmonologist?

Welcome COPD wife......I'm just a patient like your husband but I would continue to see a pulmonologist and maybe get a second opinion. You want to do everything you can to keep him at the mild level as long as possible. With the proper care -- meds- …

2 days ago

Claudya G.

Claudya G.answered the question How long have you been on oxygen?

I have been on oxygen since 2009. Started with 2 liters now on 2 1/2 to 3...and I use it all day and night... I use a Trilogy machine at night with 2 1/2 liters..

2 days ago

COPD wife

COPD wifeasked the question: Should HCP be Primary Care or Pulmonologist?

My husband was diagnosed with mild emphysema by a pulmonologist, who did not suggest any follow up. Our primary care physician says he (primary care) can take care of any associated treatments, and so far has prescribed a three part inhalation powder …

2 days ago

DanK

DanK answered the question How long have you been on oxygen?

I’ve been using o2 for about four years. Started at 2ltrs. night and 2-4ltrs for exercise. Currently up to 4 ltrs. daytime. 8ltrs. Exercise(to maintain 93% -95)o2 and 2ltrs at night with Trilogy machine.

2 days ago

DanK

DanK answered the question Favorite neb delivery device

I just purchased the pari nebulizer cups several weeks ago. I had been using the standard one that comes with the Drive nebulizer. I switched because I kept cracking the cup or stripping the stops on the cup. Also just seemed slow. So far the Pari …

2 days ago

Chilly

Chillyanswered the question Imogene

I thank you for the answer, I'll give the port. tanks a try first, I know the lady at the oxygen supplier hates when I start thinking about the Inogen, she tells me how she would never let her father go on it, even my Doctor says a lot of people he knows …

2 days ago

Jimmy S

Jimmy SGood Morning and Happy Monday.I pray that everyone reading this is breathing easy and having a great start to their day. God Bless!

3 days ago

Pookey

Pookey

I not good im having hard times to catch my breath 

3 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Imogene

If you use 2 LPM continuous flow, you might be able to use an Inogen G5 and get enough to work for you. I wouldn't get one of the smaller units because your O2 needs will grow, and you might as well have something that will grow with you. I use a G5. …

3 days ago

Chilly

Chillyanswered the question Imogene

2

3 days ago

Ken Benson-Ca. state captain

Ken Benson-Ca. state captainanswered the question Imogene

What is your current LPM on constant flow?

3 days ago

Chilly

Chillyasked the question: Imogene

I'm using Constant flow now, I'm trying to go on Pulse. I was considering 1 of the Imogene's, any input? any users? Talked with my supplier & they recommend I stay on the bottles with a pulse regulator? Any feedback god or bad would be helpful..

3 days ago

Teddy’s Girl

Teddy’s Girl

 Not been a great ‘breathing’ day. Can’t get my o2 stats above 95 with oxygen at 3 1/2 L continuously, heart rate resting 80/85. When I get up and move around o2 stats raise to 99 and heart rate goes to like 123. 

3 days ago

edpe77

edpe77answered the question How long have you been on oxygen?

I've been on O2 for about 2 1/2 years. I started just using my POC for 6+mo. My Pulmo urged me to use O2 at night also. After about a year I switched from POC to an M6 tank, which I now use for local travel, and my concentrator all day/night. I've been …

3 days ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Favorite neb delivery device

I had a pulmonary support tech years ago said pari neb cup was the best. I have two here but not my choice. I like the original neb cups the best.

3 days ago

Caroline

Carolineanswered the question How long have you been on oxygen?

I have been on oxygen to sleep since 2016. I have been on and off oxygen during the day during that time. I now am on oxygen some days and not others during the daytime. It all depends upon what the oximeter says. I am on 3 liters to sleep and I am …

3 days ago


COPD360social posts are monitored by Vice President of Patient Experience and COPD360social Community Manager, Bill Clark, as well as staff Respiratory Therapists.


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.