Bill Clark - Community Manager

Bill Clark - Community Manager

With World COPD Month quickly approaching we are looking for members to submit a short quote describing their “wins” throughout their day and their journey with COPD. We want to show that even though we have COPD It doesn't have us! Please respond with your comments below.

4 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Respiratory Care Week: Share A Story

I want to shout out to Janet Keating and Kim Sprenger, two RTs at the University of Iowa Hospitals and Clinics, who have shepherded me through the tests for three different clinical trials and from whom I've learned so much. They answered millions of …

3 hours ago

Bibby

Bibby

Hi... I’m new to this site. Haven’t quite figured it out yet. 
I have been in denial for a very long time but now my COPD is getting worse so I have to face the reality of it all.
Need people to talk to.

3 hours ago

jlynch0410

jlynch0410

Hi all, 
I am very new to this community and I want to become more involved. My mom recently lost her battle with COPD/ sleep apnea on October 2nd. I am looking for suggestions on how to become more involved and where to find more information. I am hoping that this will help me through the healing process. 

4 hours ago

  • Jean IA State Captain
    Welcome and we're glad you found us. We're always looking for new people to become involved in the patient advocacy activities that are available and to help create new ones where we don't have any. Go the "take Action" tab above and you'll find a variety of ways you can become involved and help spread the word about the disease, how to treat it and especially, how to live well with it. If you find something that appeals, please take that next step!


    I'm very sorry for your loss, but I'm glad that your Mom brought you to us.  That was a great gift and we appreciate it.  My sincere sympathy to you and your family.3 hours ago
Cap1018

Cap1018

My journey with copd has made me fierce. I accomplish every task I used to do with ease with a tenacity and resolution that I will get it done even though it takes much more time and effort. My wins despite my copd are in the laughter and the smiles I share with my beautiful grandson everyday. I will never let copd win

4 hours ago

Dee Annacone

Dee Annaconeanswered the question What Color is the COPD Awareness Ribbon?

I think l think there are more colors that represent mor than one disease. I think you can look up: https://www.personalizedcause.com/awareness-ribbon... It helps a lot! Donna

5 hours ago

Dee Annacone

Dee Annaconeanswered the question Ventilator weaning

Michelle, I am so sorry for what your mohter - ANd You_ are going through. I am 72 on 24/7 level 4-6. I am on watch for a few things that could end up with me in surgery I really do understand what she feels like. I hope someone will give some info for …

5 hours ago

Kimmi

Kimmi

Not great , my husband is smoking again.

6 hours ago

Cap1018

Cap1018

I have just recently joined but I can’t stop talking to my family about what a wonderful resource this site is and what an amazing group of people I have found on here. I love reading all the posts and for the first time ever I don’t feel alone with my copd. The fall is my favorite time of year but holds breathing and mood challenges. The shorter days and lack of sunshine can easily bring on the blues. The mold from the beautiful colored foliage and crisp air  can make even good breathing days a challenge. My hope is I can offer some contribution. 

7 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain Shirley Temple Passed Away due to COPD on 2/10/2014

7 hours ago

Jean IA State Captain

Jean IA State Captain

Part 2 

Methods for determining and interpreting within-patient
meaningful score changes in COA.

Emerging technologies to support fit-for-purpose COA tools.

A lot of the
discussion involved methodology and techniques for trial determination,
including the question they wished to answer, and having patient involvement
all along the way. It was very clear to
me that the research that the Foundation engages in with industry and
researchers, through PCORI and NIH, are way ahead of many groups in terms of
patient involvement. We have patients
who act as Principal Investigators or as members of the Executive Committee for
major clinical trials, our researchers have generally discussed the potential research
question with several, if not many, groups of patients prior to establishing
the research question to be studied and patients are engaged at a variety of
levels along the way during the trial.

The general consensus among all panels was “Ask the person
with the condition”, regardless of whether the question was regarding what’s
important to patients or the tools, methodologies or techniques to be used in
the research. It was very gratifying to
see that the patients or patient representatives were very vocal in the
discussion and consistently pushed the perspective of the patient, family
and/or caregiver. Several times the
question was asked, “What was the patient involvement in developing the
Guidances?”. I don’t recall that the
question was ever answered directly, and my guess is that there was very little,
if any. However, this conference certainly
provided the feedback from the patient perspective! My big question, which I will post on the FDA
site is: Now that you’ve developed how
patients are to be involved in this process, what will you do to ensure that
future submissions of clinical trials who evidence of patient involvement?

10 hours ago

Jean IA State Captain

Jean IA State Captain

I was fortunate enough to be able to attend a conference at the FDA on the 15th and 16th of October, along with several members of the Foundation staff. The conference was titled Patient Focused Drug Development Guidance, and I had thought it would be an opportunity to discuss this topic directly. Instead, things were a little different than I hd expected, but relevant, nonetheless. The FDA has guides for pharmaceutical and research enteties to follow when they’re developing their clinical trials with FDA approval as an end point. The FDA is currently in the process of re-working these guides and have developed four parts to the total guidance. There was a previous conference to discuss Guide One. This Conference was designed to discuss Guidances Two and Three and there will be an additional conference to discuss Guidance Four. The approach they used was interesting and useful, I thought. They had developed specific questions or issues raised by each of the Guidances and had brought together panels to address them. There were four panels each day. Each panel had representatives from industry, research, academics, clinical experts and someone who was either a patient or represented a patient advocacy group. The panels usually had five to eight individuals. The moderator would pose a question, and through preparation, selected members of the panel had a set answer to initiate discussion. General discussion between panel members occurred and there was time for questions of comments from the audience at the end. The questions or topics were: Methods to identify and emerging best practices to identify what is important to patients. Clinical Outcomes Assessment (COA)Use to support patient focused outcomes throughout the medical product lifecycle. Roadmap to COA selection and/or development for clinical trials. Considerations for selection and use of COAs for special populations.

10 hours ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF Staffasked the question: Respiratory Care Week: Share A Story

This week we celebrate our respiratory therapists in our community, who work so hard and tirelessly for COPD patients! My question for this week is, do you have a story to share about a positive moment, or an impact that a respiratory therapist has had …

11 hours ago

JeanO53

JeanO53

Follow up to yesterday's post....

It seems to be so illogical, but exercising when lacking energy can increase energy.
I went grocery shopping yesterday at one of the "mini" warehouse supermarkets and intentionally went through every aisle from one end of the store to the other, and back again.  I went through a full battery so I figure it was about 1-1/2 hours, stopping only to pick out items.  I know it's not the same as a treadmill, but I figure moving is moving.

Not only do I feel a bit more energetic this morning, my spirit has been lifted out of feeling so blue.

Note to self... Remember this feeling!

12 hours ago

edpe77

edpe77

You folks should be able to relate to this mornings "Frank & Ernie" comic. Frank lists all his friends on Facebook, twitter etc. Then he asks Ernie - who replies he has a dog. Frank replies ...You Win!
ed

16 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good morning all you early birds. Hope you are all enjoying your weekend. I have read that some people are having SOB and other difficulties due to the changing season. I am also having difficulties. Yesterday it seemed as though everyone felt that they had to load up with perfume and cologne. Every place I went it was that way. I have been coughing alot during the night and my husband is annoyed because he says he isn't getting enough sleep. Join the club, hub. When I get up in the morning, the SOB is bad. I use my maintenance inhaler and after a while it helps. I live in the woods, so all the falling leaves affect my breathing. The heat being on does too. I am trying to keep going. It is taking me a little longer to accomplish my chores. Being active helps me alot. Best thing to do is avoid going into a panic mode. Thanks for all of your posts. It is a big help knowing I am not alone with these symptoms. Have a good Sunday and have the best breathing day possible!!! 😊

20 hours ago

Cap1018

Cap1018commented onCOPD in 2016

 I see my pulmonologist yearly and when I ask if there are new treatments for copd or new meds I could try he just says no they all work about the same and not much can help you. He gives me a open script for steroids and antibiotics that I can fill...

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain Here is a brief description about Drug Formulary and why something may not be covered. 

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain This wasn't staged Bear made himself warm and comfortable.

1 day ago

Gina Bradshaw-Arkansas State Captain

Gina Bradshaw-Arkansas State Captain answered the question Back and chest pain when breathing

In 2008, I was on my way to work when I felt a sharp pain in my right side then it felt like bubbles coming up from the bottom of my chest to my shoulder. My back, shoulder, and right side kept hurting. I worked for 6 hours then decided to go home and …

1 day ago

Tony

Tonyanswered the question Back and chest pain when breathing

Have you ever had a blood clot? The first thing that jumped to my mind was pulmonary embolism. They can come an go on their own with no lasting effect, but I would guess whomever you saw would have considered this, especially with chronic lung disease …

1 day ago

GinaW

GinaWanswered the question How to monitor/know limits with exercise.

Caroline, you hit the nail on the head when you mentioned making sure your heart is healthy. I think that is my husband's problem with exercise, it isn't just the COPD that slows him down, it is the chronic heart failure. He has an ICD (implanted cardio …

1 day ago

Michelle Fritter

Michelle Fritterasked the question: Ventilator weaning

My mother has advanced COPD. She's on 2.5 liters a day and triology machine at night. She's only 68. She had a bowel obstruction surgery 4 weeks ago that has just gone down hill. Her lung collapsed and now she has MRSA in her right lung (a lung abscess). …

1 day ago

Caroline

Carolineanswered the question Back and chest pain when breathing

One morning when I was in college, I decided to sleep in and reached behind me for the covers and had a sharp shooting pain. This pain persisted when I breathed all that day. Finally by evening I had endured all that I could stand and went to the doctor …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Back and chest pain when breathing

If you worked out hard with weights, you could easily have pulled muscles you didn't even know you have and that can create pain, but you should have been able to identify it as muscle pain. The only other thing I can think of is that when the lung wall …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Back and chest pain when breathing

Every so often Dan, I get a sharp jolting pain and it seems from my inhalers? Can't put my finger on it I've read on Drugs.com you can get muscle type pain or other types of pains. Here is another post https://www.copdfoundation.org/COPD360social/Commu. …

1 day ago

DanK

DanK asked the question: Back and chest pain when breathing

I just returned from the local ER after waking this morning with sharp pain in my upper left chest area that was so severe I could hardly take a breath. Pain is not constant only when taking a breath. This started yesterday with same thing only it was in …

1 day ago

bunnymusic60

bunnymusic60commented onCOPD in 2016

 Sure. It's got something to do with CO2. Does he use a bi-pap?...

1 day ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question What COPD Activities are YOU Involved in Locally?

There are members on here from around the globe....well over 100 countries

1 day ago

JeanO53

JeanO53

   I've been in a bit of a funk the last few weeks.  Feeling slightly "under the weather", not really sick, but very little energy, and more SOB than usual.  I've had to push myself to keep moving. I'm working on being careful to find a balance between getting enough rest and "pushing through" the lack of energy.  I've had a history of running myself down to zero, so finding balance is a new skill for me.
   It was last year at this time that I first started to feel really sick, did 3 rounds of methlyprednisolone, ultimately leading to the COPD diagnosis in January.  Given what appears to be a repeat of what occurred last year, I'm thinking there must be some environmental factors at play; leaves falling from the trees, wide variations in the temperature, the need to close windows, the heat being turned on at work & home, etc.   
   Autumn has always been my favorite time of year, but I must admit I'm feeling a bit anxious about what it will bring this year.  In preparation, I got my flu shot and an updated pneumonia shot. Due to lack of energy, I've let my regular exercise routine lapse, so I know I need to work on that.
   Today, I'm just going to work on putting one foot in front of the other and not getting stuck. 

1 day ago

GinaW

GinaWcommented onShort of Breath After Eating

 Very informative article, thank you. My husband's appetite has been decreasing over the past year, I thought it might be partly his age (76) but now I can see it isn't just that. He has been asking for soup for dinner recently, followed by a cup...

1 day ago

GinaW

GinaWcommented onWhat is the Difference Between Emphysema and Lung Cancer?

 That was a very informative article and I am going to print it off and show it to my husband, who is convinced he is going to die soon. I was told years ago that the good news about his severe emphysema is that he will never get lung cancer,...

1 day ago

GinaW

GinaWanswered the question What COPD Activities are YOU Involved in Locally?

I am aware this is an American based website, but you do state that you have members in other countries. I am wondering if there are any in Australia? We don't know anyone else who has COPD and I wish my husband had someone other than me (and his …

1 day ago

GinaW

GinaWanswered the question COPD & Exercise

You must all be a lot younger than my husband. He used to be very fit, never overweight, and raced motorcycles in his youth. Still rode one up to a few years ago. But now at 76 years old with severe emphysema, chronic heart failure, diabetes, and extreme …

1 day ago

GinaW

GinaWcommented onCOPD in 2016

 Everyone seems to assume that if you have COPD/emphysema you should be on oxygen. My husband has severe emphysema, is not on oxygen and never will be. Three lung specialists have told him this, but last week his GP finally explained the reason. ...

1 day ago

GinaW

GinaWanswered the question Short Term Memory

I think it might have a lot to do with his age. My husband is 76 and has COPD but does not use oxygen (it would poison him - he has severe emphysema). He also has chronic heart failure and diabetes 2, and is on multiple drugs. The combination of all …

1 day ago

Mellie

Mellie

Just received an interesting notification today about the positive interaction between taking Losartan blood pressure medicine and lessening the symptoms and severity of Emphysema.  Sounds intriguing, since I started to have the requirement for Losartan (25mg) not too long after getting diagnosed with this lung disorder.  Sounds like I could be doing a lot worse.! Thank heavens for these little positive things that pop up in our world.  :)

1 day ago

GinaW

GinaW

Hello, I have just joined and feeling my way around this site.   I am the primary carer for my 76 year old husband who has had COPD for 20 + years and is deteriorating faster as he gets older.  He gets very anxious and is on new meds for this, but not sure if they are working.  So hard to deal with as we get older.

1 day ago

bpattiflorida1

bpattiflorida1

Hi Guys!
Any suggestions for health enrollment with Asthma/COPD pre existinting? Going to need it for Xolair Nucala and Faseneral injections (not sure on spelling) up kind of late. Take care and be well. Patty

1 day ago

Orlan = State Captain - Indiana

Orlan = State Captain - Indianaanswered the question Short Term Memory

Well since nobody else is going to answer this question, I will give you my opinion. Yes, if he has been on oxygen for over 5 years it is very possible that this is causing some memory loss. I was on oxygen 24/7 for 10 years before I received my double …

2 days ago

pattybreathes

pattybreathesanswered the question COPD & Exercise

Treadmill walking and yoga. I've also been working at more resistance training but sometimes the osteoarthritis kicks up a storm. I plan to get back to my Ai Chi class (Tai Chi in the water) in two weeks. The yoga followed by meditation is what allows me …

2 days ago

muddleaged

muddleagedanswered the question Portable Oxygen

Looks like you have only one choice: make it work. There are a couple of approaches. 1) Learn to breathe in a way that works. Have you tried JeanO53 's suggestion of pursed-lip breathing? I have noticed that when I change from my 2L concentrator at …

2 days ago

Tony

Tonyanswered the question Portable Oxygen

Avelina, if your D tanks are filled to 2000 psi, I think you should be getting closer to three hours set on 2 LPM. A two hour duration sounds more like 1500 psi. Or maybe it's the regulator. There are regulators available that don't have the pulse …

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain COPD scarecrow is busy holding up a lamppost on the corner of Main St in town. All the lampposts in town have them as part of the October festival. All different themes, local businesses, all sorts sacrecrows. 



2 days ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF StaffAnnie and Zoe are both enjoying a nap for this fluffy fridays post! This weekend I am headed for a one night camping trip, and I am hoping that it doesn't get too cold in the night, packing all the layers I can! What is everyone else up to for the weekend? Does anyone else love October too? (its my favorite month in the whole year)

2 days ago

Avelina

Avelinaanswered the question Portable Oxygen

Thank you all for the input. This paragraph is about cylinders. I am using D cylinders. I too, place the cylinder in my grocery cart. I use the continuous flow set on "2" and the cylinder lasts 2 hours. The regulator which is attached to the D cylinder …

2 days ago

pattybreathes

pattybreathes

I am an older adult with COPD and secondary Pulmonary Hypertension. I"ve been using supplemental oxygen for exertion for 10 years.  My recent pulmonary function test was much improved and the 6 minute walk test resulted in no need for O2 at that time.   I'm so used to using oxygen when moving around for household chores, trips out, etc., that I'm fearful of being without it.  Sometimes the level drops to 88 but recovers in less that a minute.  I am still short of breath but my pulmonologist said that's because of the COPD and restrictive lung disease.  I thought I'd researched enough to be well informed about my condition but questions to the doctor or his staff are met with a blank stare  and the response to be grateful that I no longer have to drag 50 feet of oxygen tubing around the house.   I'd appreciate any thoughts.  

2 days ago

PDeNardo

PDeNardoanswered the question COPD & Exercise

I like walking since you can do that anywhere. Lately I have been learning line dancing. Still pretty difficult for me. If you ever wonder if it's really that good for you, stop for a week, or have an exacerbation and you find you really can go downhill …

2 days ago

Jimmy S

Jimmy SI Jimmy am a 63 year old former smoker of over 40 plus years. I was
what you would call a very serious smoker, because I couldn’t and didn’t
want to stop; even with all the warning from my Doctor(s), family
members and friends. I wanted to be cool! Well wanting to be cool
caught up to me on February 25th, 3:00am, 2010. (That was my last
cigarette) at 3:20am I was being put into an ambulance in Respiratory
Distress. 2-½ weeks later I am waking up in a hospital room after having a tracheotomy perform on me. I had destroyed my lungs so bad that I was label Stage 4 Emphysema in End Stage right away.
Bottom line is I was in such denial and now it’s to late. Why? Because
you can’t un-do the damage to your lungs, it’s not a fixable organ. I am
here to tell you it is not worth picking up anything that is smoke
related and putting down your lungs. My tip for you to quit and stay quilted is:
1. When that craving comes and you already used the patch, the gum,
simply get up and distract yourself from you’re at the moment thought
process. 2. Get away from all SMOKERS until your comfortable
being around cigarette smokers again.(Which i hope you never get that
comfortable ever again) 3. Its okay to tell family, friends, etc. to please not smoke around you during your hard time(s).
4. Don’t be stupid like I was and wait till something bad happens to
you. Like getting a tracheotomy and learning how to walk all over again
at 54 years old. Not fun!! On that note, I hope everyone is
having a good day and pacing yourself so you can enjoy the whole day and
not just part of it. Stop and smell the roses and blow out the candles.
Pursed Lip Breathe your way to a good day my Friends.

2 days ago

  • NewestOldest
  • DebbieB.-Connecticut State CaptainJimmy....I am glad you wrote all of this and glad that I read it. I am sorry about your health problems. You can teach alot of people what you have learned. You can really help some confused individuals. Some are torn between quitting and lighting up. I feel that when a person is in the process of quitting smoking they should steer clear of other smokers. No one should smoke around someone who is trying to quit, or around anyone with breathing issues. I wish I had never smoked, but it's too late for that. Breathing in things that are toxic contributed to my breathing problems. 2 doctors told me that the damage to my lungs could not have been completely caused by smoking, especially at my age. That is when I was 50 years old. I am 55 now.  Car fumes from older cars...gasoline fumes...spray paint...highway fumes...to name some are all contributors. I also have asthma. I live in the woods and the wetlands with the highway behind the backyard. Mold and germs are everywhere. I try my best to take care of myself. I am happy to help anyone that needs me. I find happiness in each day. I also hope everyone has a wonderful day! I appreciate what you posted here Jimmy. Thanks!    Debbie2 days ago
  • Kandy State Captain of South Dakota Very nice post hits home for a lot of us that smoked!2 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.