Community Announcements

Community AnnouncementsA new page has been added to the COPD Foundation website:

https://www.copdfoundation.org/Learn-More/I-am-a-Healthcare-Provider/The-COPD-Pocket-Consultant-Guide.aspx

The COPD Pocket Consultant Guide | COPD Foundation

The COPD Pocket Consultant Guide (PCG) app for healthcare providers, available for both iOS and Android is designed to support the treatment and management of COPD.

1 day ago

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.

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.  

4 minutes 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 …

38 minutes 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.

1 hour ago

Silver lining

Silver lining

Very tired. Been awake since 2:45 am because my arm was asleep. Got up and started coughing, which sounds like loose phlegm but coughing so hard I almost threw up. Not sure if it was asthma attack or COPD related. Very rough this morning.

9 hours ago

Caroline

Carolineanswered the question COPD & Exercise

If I have to pick a favorite I guess it would be Yoga or at least Yoga is what I do when I feel that I cannot exercise. Usually after the Yoga session I am ready to do whatever else needs to be done for that day. I also love to go to the park and walk. …

14 hours ago

Gail56

Gail56commented onMyths about COPD

 Thanks it was definitely worth reading and the reminders....

15 hours ago

Tony

Tonyanswered the question Portable Oxygen

Avelina, I am in a pulmonary exercise program and a vendor brought a couple of pulse cylinder regulators. Neither one worked for me. There is no small carriable POC that puts out more than 2 LPM. Most put out 1 LPM or less. The numbers one can select do …

16 hours ago

2cents

2centsanswered the question Portable Oxygen

Avelina, do you have a portable oxygen concentrator or are you talking about tanks that you fill and are portable? I am a shallow breather too, but I have no problem using my pulse delivery when I am up and moving around, especially exercise. Turn your …

19 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question I cannot afford my COPD medications…what can I do? Are there any affordable treatment alternatives?

ShenValley Girl, Actually, your comment isn't totally correct - you quoted the FDA language, but left out this part: ***FDA, however, has a policy explaining that it typically does not object to personal imports of drugs that FDA has not approved …

19 hours ago

ladunda

ladundaanswered the question Questions to ask doctor

Well, I took my dad to his Pulmonologist yesterday. I did go back in the room with him. High blood pressure and high heart rate. Oxygen was at 95% FEV1 is at 21% He is losing weight and losing muscle mass. I told the doctor that he called me crying …

23 hours ago

Silver lining

Silver lining

Does anyone know what “moderately advanced” COPD category this falls under?

23 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Silver liningThank you. I just started my first dose of Chantix.  It’s a step anyway. I went from 103 lb down to 87 lb which was a big problem for me. I started taking Mirtazapine to gain the weight back, worked like a charm, back to 104 lb. I am scared to exercise because I do not want to lose any weight. I used to eat very healthy, salads, fruits, veggies. My diet is very limited due to food allergies. I now eat fast food. I do not have high cholesterol.  Any suggestions?7 hours ago
  • clipper (Debbie) - NJ State Captain Congrats on quitting, you will do great.👍🏼
    It is much harder to lose weight with exercise than people think. Don’t be afraid to exercise. For example I do about 30 mins on the stationary bike, total calories burned is just around 125, basically an apple, one lousy apple.  Exercise releases endorphins which will ease the cravings a bit. Strengthening exercises will build muscle mass, which is exactly what you need.  Quitting and exercise go hand in hand, it will help. I used a free peer to peer online group QuitNet.com. Some of us there started a daily exercise thread where we posted our exercise for the day. They still do it, it was helpful a good little motivator and very supportive. 



    To gain weight there are healthy options. Nut butters like almond butter and peanut butter.  Smother apple slices with almond butter and raw honey. Olive oil is a healthy fat and high in calories;  olive oil salad dressing and olive oil to sauté your veggies. Avocados are also high in calories and very healthy, avocado toast is great for breakfast or lunch. High protein yogurt, Icelandic style has around 15 grams of protein. Fast and easy are protein bars and protein drinks. 
    Snack on nuts, keep a bowl of unsalted almonds and walnuts in front of you. If you ate nuts to help curve your cravings you will gain weight, trust me, I did. I am 5’4”, the day after I quit I weighed 108lbs which was the thinnest I had been in forever. Not on purpose, it was from feeling so badly.  I won’t mention my weight now.  Quitting will help in so many ways. The two most important things you can do is to quit and exercise. 3 hours ago
  • clipper (Debbie) - NJ State Captain The congrats is for starting the quit process. I understand it is a process but that first step is a big one. I only took it for about 5 days prior to quitting instead of doing the two or more weeks. I got through it but it would of been easier if I had given the medication more time to build up in my system. A tobacco cessation counselor suggested I could take it for as long as 6 months if I needed to. I gradually stopped after 4-5 months. I cut back to once a day and I just started forgetting to take it. I didn’t rush it, that is what came naturally to me. 
    Drink lots of water with each pill, that helps. And also eat something substantial before taking it. 3 hours ago
Kristen Willard

Kristen Willard

"Flavor chemicals and the solvents, the liquids, that are in electronic cigarettes, they are forming new chemical compounds," said Sven Jordt, one of the authors of the study published Thursday in the journal Nicotine and Tobacco Research and an associate professor of anesthesiology, pharmacology and cancer biology at the Duke University School of Medicine.These new compounds can cause irritation in the airways of e-cigarette users, the researchers found.

https://www.cnn.com/2018/10/18/health/flavored-e-cigarette-e-liquid-study/index.html

23 hours ago

kulp42612

kulp42612answered the question What Color is the COPD Awareness Ribbon?

I am new also....my wife has copd and i wanna get a tattoo of the ribbon but i also was told orange was for MS . just wanna make sure before i get it i did see where copd is orange also

1 day ago

leenie

leenie

I recently went on Medicare and -- surprise! -- the first bill for my home oxygen unit is nearly $400, an increase of almost $300 from previous. Therefore, it seems time for me to purchase a home oxygen concentrator. I would be grateful for recommendations. Currently I have Respironics and have used Invacare a few times, as well. The only positive aspect of renting a machine i the supplier has had to swap out my unit at least once a year when warning lights come on. I'm not sure how that would work if I owned a machine. It also might be good to note I stay on oxygen almost 24/7 at 2LPM. 

1 day ago

Silver lining

Silver lining

Does anyone know what “moderately advanced” emphysema is??

1 day ago

PamR

PamRasked the question: Short Term Memory

My husband has COPD, Gold Stage 4. He was diagnosed 5 years ago, but he has definitely had it longer than that. He has been on oxygen 24/7 since day 1 of diagnosis. Lately , I have noticed his short term memory of things I tell him is not so great. Is …

1 day ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF Staffadded a new article Lorin Collins

Welcome our newest State Captain!

As a respiratory therapist and the newest State Captain from Ohio, I hope to accomplish promoting COPD awareness and to enhance COPD patient's...

1 day ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF Staffadded a new article Eddie Fisher

Welcome our newest State Captain!

As a former caregiver, and the newest State Captain for Florida, I hope to accomplish educating everyone that I can reach about COPD & the steps to...

1 day ago

ShenValley Girl

ShenValley Girlanswered the question I cannot afford my COPD medications…what can I do? Are there any affordable treatment alternatives?

In the united States you cannot get yoru medicine from another country It is illegal for individuals to import drugs into the United States for personal use. This is because drugs from other countries that are available for purchase by individuals often …

1 day ago

tlane

tlaneanswered the question COPD & Exercise

I don't think really have a favorite. I try to do a variety, treadmill,arm bike, biostep, some weights. They all add to my over all health. I spend 5 days a week, 60-90 minutes a day in the gym. I am on oxygen 24/7, and at first it was very difficult. …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question COPD & Exercise

I love walking, I went from 1/2 mile at about 2.7 miles an hour 2 years ago to a steady 5 mile distance now at 3.8 miles an hour. My Doctor told me yesterday, my diet and exercise routine TRUMPS anything we can offer you at this point, and one of the …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question COPD & Exercise

A favorite, if I had to I would say kettlebells because they combine everything; strength, aerobic, and balance. My favorite exercise in terms of functionality is a kettlebell farmers carry. We don’t just walk through life, we walk through life carrying …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question COPD & Exercise

Exercise, frankly, gave me back my life. As a result of the exercise program I developed in 2003 and have continued since, I was able to work full time until my planned retirement in 2010. Since then it's enabled me to continue to work part time for a …

1 day ago

Cap1018

Cap1018

For me COPD stands for, create only positive days! I huff and puff my way through everyday and my days are wonderful no matter how hard the struggle cause I can still see the people I live the most enjoy life and that for me is everything. I spent today with my grandson doing Halloween crafts and tonight we are decorating the house for Halloween. What a way to spend a day!! 

1 day ago

ijmorris

ijmorris

Hi My Best Doctor Ever ;)  It's Ilene Fell which is my last married name that Social Security refuses to change to my correct name.  You have helped me fight this horrible disease since day one and wanted to express how fortunate I feel to have found you as my Pulmonologist.  You are a dying breed of doctors that gave me faith again the medical community.  Your compassion, knowledge and encouragement will forever remain in my heart!

1 day ago

Robbi

Robbi

my first step today was finding all of you to share this experience with...thank you!

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain I can’t put this on Main Street until Friday but Toast is enjoying it. I found out today that they gave me a great spot, a very busy corner in town. There will be tons of foot traffic. I will take another picture Friday after I install it. 

1 day ago

Jeffrey

Jeffreyanswered the question COPD and Pets

Janina K: I just realized that your question had two parts and I only addressed one in my previous post. Mea culpa. In my opinion, the benefits of pets are especially valuable to people with COPD. Since we have a disease that is incurable and life …

1 day ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF Staffasked the question: COPD & Exercise

- What is your favorite type of exercise to do? -If you are a patient, how has exercise helped you with your COPD? Have you noticed any changes? -For newly diagnosed patients who want to get moving, but may feel intimidated, what advice do you have for …

1 day ago

jdawsontx

jdawsontx

I have been working with Carl Mullins since August 2017 on COPD Awareness. I have been providing educational materials to a couple of Bingo Newsletters for publication during that time. Mr. Mullins has received numerous phone calls and letters from COPD patients and care-givers as a result of those publications. In addition, I have applied for grants from Walmart and other resources with monies being donated to COPD Foundation, Inc.
Mr. Mullins has received donation checks which he forwards to the National office. Apparently the National office has advised Mr. Mullins to open a local bank account for donation receipts. We now are discussing other donation options such as Facebook and GoFundMe but have questions regarding requirements and best practices. I myself am not currently listed officially in any capacity.

1 day ago

Ezella

Ezellacommented onA Trip to the Villages

 Great article come to North AL.. please ...

1 day ago

Ezella

Ezellacommented onTaking the First Step

 Where do you get a advocate?...

1 day ago

Ezella

Ezellacommented onRespiratory Therapists, Telehealth and You

 I agree completely about a respiratory therapist. I live in a small rural town in AL..and any or all services of any kind are limited as is my income. I worry constantly about comorbidities. I have several diagnosisespecially of...

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain commented onWhat is a "Top Breather"?

 I suggest that you go see a good pulmonologist. I would ask them about medications that might make breathing a little easier for you. Make sure you bring all your medications with you. I like the idea of bringing them rather than writing them down...

1 day ago

Ezella

Ezellacommented onWhat is a "Top Breather"?

 I too am a top breather, didn't know this until I read the description. I am having a hard time getting the proper medical treatment, I don't know who to go to or the proper questions to ask. My last pulmonary function test showed restrictive...

1 day ago

dmcoetzer1960

dmcoetzer1960

Very sad today, my husband who was at end stage COPD passed away.. He fought for so long and hard and ato the end his body could not anymore.  He had 3 strokes in 5 weeks leaving him unable to walk and do anything, i have learnt so much about COPD and try to inform other ignorent people about of COPD, my 3 years caring for him has made me appreciate life even more.

2 days ago

dmcoetzer1960

dmcoetzer1960answered the question End stages of COPD

It depends on the person self, my husband was in the end stage of his COPD and passed away today, 17 October 18, 3 years after being diagnosed at first. He had 3 strokes in 5 weeks and became totally dependant on me, unable to walk and do anything for …

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

I took this week off to get caught up on errands. I have been getting to the gym around 9:30 instead of 6:45, doing a nice full workout. I am liking this. Except today I went a little too far with leg day and I now have I have jello legs.  

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain commented onMaximizing Lung Capacity

 JonDanielIn time it becomes second nature, I find myself doing it without even thinking about. Just as breathing normally is natural to you know, PLB becomes pretty natural. Unless there is something else going on that is a problem for you. Just one...

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good morning! I believe in simple things bringing peace. Peace helps me get through each day and peace is a diversion from illness. It erases stress. This past Sunday morning hubby and I were out getting coffee and stopping at my parents house. I had to mail a card near the Golden Corral buffet, which is in a shopping center near me. I saw a Carolina wren flying into the windows of the buffet. He was losing feathers. He was stunned due to the cold. I picked him up and pet him and named him Gordie. He sat on my hand as I carried him to the car. He flew right into the car and sat on the seat. We drove him home and he flew out of the car and landed on a tree branch. He was okay! That was enough to give me inner peace for days! Helping Gordie helped me! ❤

2 days ago

das

dascommented onMaximizing Lung Capacity

 I have had shortness of breath while exercising also. I stop and do pursed-lip breathing then go back to exercise with regular breathing. I can't seem to do pursed-lip breathing while I perform an exercise. Maybe I need more practice. I don't really...

2 days ago

Ben A

Ben A

The appointment with the new pulmonologist went very well.  I spoke extensively with the Fellow as well as with his Attending physician mentor.  Both actually LISTENED to me, which was a refreshing change.  Based on my PFT from this summer, they both suspect that there is a significant asthma component to my COPD that MAY be treatable!  If so, I should be breathing significantly better in the future.  And I found it amusing to hear the Attending actually say, "Based on your numbers, I expected you to be much, much sicker but here we are....."  LOL


Next appointment (barring unforeseen circumstances) in six months.


Thanks for everyone's supportive comments!

2 days ago

MikeUK

MikeUKanswered the question Swimming and Supplemental Oxygen?

perhaps a chat to your local diving club and a diving instructor may be an idea Obviously they use waterproof equipment so could advise you perhaps and why not join the club? Good luck UK Mike

2 days ago

Bill Clark - Community Manager

Bill Clark - Community ManagerSomething to keep in mind as the weather gets colder!

2 days ago

BonnieAdler - State Captain NJ

BonnieAdler - State Captain NJ

Yes it is Flu season - Hope you all got your shots . Here i s a GREAT SAFE link to see how the flu is doing in your area. Please stay safe out there !!!
https://www.cdc.gov/flu/weekly/usmap.htm

2 days ago

JudyAP

JudyAP

Wanted to comment on COPD, anxiety and cpap use: in an exacerbation, be careful the patient's breathing doesn't fall out of sync with the machine. If that happens, in our experience, the SATs can fall precipitously while the patient feels more and more out of control.

2 days ago

2cents

2centsanswered the question Do pets make COPD worse?

If someone already knows that they have an allergy to dogs or cats, it makes sense to stay away, COPD or not. I do not have an allergy to her, it's my dog that seems to be allergic to everything. I treat her allergy with meds and she keeps me sane. Fair …

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.