COPD360social welcomes new member Me1234 who joins 55,775 current members of our community. We’re glad you're here!


Me1234

Me1234

Feeling like a complete PF12. My mother passed away in 2014 with COPD. Didn’t stop smoking then. I am now 51. They have diagnosed me as mild/moderate COPD. I don’t understand my numbers freaking out completely.

1 hour ago

muddleaged

muddleagedanswered the question Check-in: You’ll Never Walk Alone: How Pulmonary Rehab Can Build Confidence, Stamina, and Friendship

I'm sorry you could not all attend the program I went to in 2012. It was in the hospital, run by a PT, but she did not try to know everything. There were "guest speakers". An OT talked about adaptive equipment. A DME rep demonstrated equipment and …
jodan1213Phyliss DiLorenzo NJ State CaptainTonicDkand 2 others also answered the question jodan1213and 4 others also answered the question

5 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Results are in: Bruce's pet scan showed "very suspicious" nodules. One has been growing at a fast rate. The results suggest biopsy, which must be scheduled ASAP. Then, there is a good possibility of surgery. If the biopsy results show cancer, Chemotherapy may be necessary.  
So, we'll have to wait and see. Bruce is radioactive until early tomorrow morning. 👽

9 hours ago

Golfore10

Golfore10answered the question Trelegy-I had switched from Anoro Ellipta to Trelegy Ellipta

What a great group of people here. Don't forget to brush your teeth after Trelegy. I have read that it can also stick to your teeth.
Stephanie Williams, RRT (COPDF VP, Public and Professional Education)Richard DJMike Hess, RRT (COPDF Senior Director of Public Outreach and Education)and 2 others also answered the question Stephanie Williams, RRT (COPDF VP, Public and Professional Education)and 4 others also answered the question

10 hours ago

Amanda Atkinson, MSN, RN

Amanda Atkinson, MSN, RNasked the question: Exercise and Nutrition: It does a body good!

There are many things that impact our overall health and how we feel daily. Two of those things are nutrition and exercise. Making a habit of practicing good nutrition and moving your body is important for everyone but is vitally important if you have …

12 hours ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question What is the best protein powder for someone with COPD that needs to gain weight?

Sorry petsforne, for the typo in your name.
muddleagedRuth Tal-Singer, PhD COPD Foundation Christina H RRT also answered the question muddleagedand 2 others also answered the question

14 hours ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question I have condensation building up in my tubing, causing me to inhale water. What can I do?

I have used he bubbler every since I been on o2. If I don't my nose is very dry. I can tell when its gone.
NancylalaCarol BCharlesHand 3 others also answered the question Nancylalaand 5 others also answered the question

14 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie B’s Kitchen to Yours

🟠SWEET POTATO SMOOTHIE🟠1 cup unsweetened plant based milkI baked sweet potato, skin removed2 pitted Medjool dates 1/ 2 tsp. cinnamon1 tbsp. sunflower, peanut, or almond butter1 1/2 frozen bananas, broken into chunksAdd all ingredients to a high...

17 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHave a wonderful, easy breathing day, friends! 😊🌞

21 hours ago

Re-Pete

Re-Pete

I am new to this website. I am looking for information about whether or not medication can actually make the situation worse. I had COPD 10+ years ago and quit smoking a heavy habit at 3 packs a day at 9 years ago and never seeked medical attention knowing that the damage done is the damage done and medication cannot undo the damage rendered. At 9 years ago I was getting bronchitis 3 to 5 times a year and the junk was always coming up. Over the years, the junk-fluid has nearly abated 100%,  However, via recent PFTs, I'm 73" and male, I clock in at Severe COPD via emphysema, with FEV1 at 1.77,  FVC at 3.7  FEV1/FVC at 48%,  RV (pleth) @ 208% from hyperinflation and DLCO at 16.24.  I was worse in some ways 10 years ago and never seeked medication. I am now however seeking meds to try to ease symptoms. Personally I'm improved via lack of infections and crud, but the tight spasms and moving air is at times more difficult after exertion. We all know the deal, work out...lungs blow up and hyperinflate the the in and out of breathing gets stuck at that level....not getting the air out as TV commercials indicate. Yet they cite side effects of Pnuemonia and thrush and such. I've not suffered these of recent. Soooo, which med is best based on folks experiences. I'm sort of thinking to just tap the peddle with some albuterol from time to time to open things up a tad on rare occassions.  The Albuterol applied at the PFT did help with some good residuals of opening up over the course of a week or so. Just wondering.....can overmedicating simply make things worse by messing up the body's natural strive to find homeostasis. The body will act to counter drugs in part and with any drug tolerance is obtained. Soo what works best based on people actually trying the medications?

1 day ago

  • NewestOldestClick to View All Comments6 comment(s)
  • DebbieB.-Connecticut State CaptainFirst, I'll say that every single person's needs are different.  Second, I'll say that if a person is using maintenance medication, and it is working, then it means that person should continue to use it. 
    I have tried a whole lot of medications. Some did not work. Some did for a while,  then did not work as well. Others had side effects I could not live with. Now I am at a point where I am doing okay with the medications I use each day. I use Albuterol for rescue, inhaled and nebulized.
    I have COPD and asthma, so my routine may be totally different than a person who has COPD alone.1 day ago
  • David Mannino, MD (Medical Director, COPD Foundation )This is certainly worth a discussion with your doctor.  There is no clear cut and easy answer.   Options would include a single bronchodilator ( like Spiriva ), a dual LABA/LAMA (  like Anoro),  a triple ( Like Breztri), or even an ICS/LABA ( like Advair).  I think I'd gravitate towards option 1 or 2.  I'd also recommend pulmonary rehab if you have not been through that program yet!  Please let us know!1 day ago
  • Phyliss DiLorenzo NJ State CaptainI cannot say what inhaler is best, as we all react differently to inhalers.  I can tell you that the right inhaler for you, can absolutely make a difference.  For example, one of my inhalers was out of supply for a short time, and I was given a similar inhaler, with one matching ingredient, but the other was different.  The shortness of breath returned. Luckily, it was just a week and a few days until I received my AirDuo.  Inhalers do make a difference!

    Also, while all meds have side effects, not everyone will experience them.  I have had pneumonia prior to starting maintenance inhaler therapy, but not since.  I have had thrush once in the 5+ years I have used ICS, but that was during a bout of bronchitis , which I believe my immune system was lowered, giving thrush an inroad.
    Talk to your doctor and all the best to you !  12 hours ago
Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question What research is being done regarding anti-inflammatories and theirtori effect on phlegm?

Sorry Jean, for the typos. To clarify, I am only saying that while the US may be the highest income country, to say the high income world just seems to be neglectful if the fact that most people everywhere are not of high income. I think we need to be …
BlairTCaroline West Virginia State CaptainRuth Tal-Singer, PhD COPD Foundation and 4 others also answered the question BlairTand 6 others also answered the question

1 day ago

CaroUK

CaroUKanswered the question Pneumonia recovery? Any tips pls?

Thanks so much Jean. I did go to doctor as soon as problems began but unfortunately the antibiotics they gave me were too ‘mild’ I think. They did nothing as illness progressed. Was eventually given co-amoxiclav (augmentin) once I ended up in hospital …
Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)David Mannino, MD     (Medical Director, COPD Foundation ) also answered the question Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)and 1 other also answered the question

1 day ago

Bright

Bright

Hello please help me For seven months i have not been able to get rid of my shortness of breath.
Every second i have to take a deep breath and exhale and it comes with chest pain .. its not making me eat well because when the food enters the breathing comes with pain as if am not getting enough air i need help pls done all test everything proves negative. What should i do😭

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie B’s Kitchen to Yours

CUCUMBER, TOMATO AND AVOCADO SALAD 2 tbsp. olive oil 1 tbsp. white wine vinegar 1 tsp. orange zest1/2 tsp. salt1/2 tsp. honey1/2 tsp. chili powder 1 large English cucumber, chopped1 cup cherry tomatoes, halved1 ripe avocado, halved, pitted, peeled...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Living with mild emphysema

If you continue to work out, don't smoke or vape again, eat a reasonably healthy diet and a reasonably healthy life style, you can probably get along for a long time assuming that your breathing test shows that your breathing is only mildly or moderately …
Chelly mankeegandas23 also answered the question Chelly and 2 others also answered the question

2 days ago

EvanofEarth

EvanofEarth

2 days ago

mankeegan

mankeegan

OK. Recently diagnosed w mild emohysema from a physical ct scan. Thank Goodness no cancer. Here for support. 52 yr smoker so I shouldn't be surprised. Must quit now. Have a pulmonologist visit in May 2023 to asess. Glad to have joined the community.

2 days ago

Chelly

Chelly

How are you doing has yours stayed the same 

2 days ago

Sinead13

Sinead13

Can a doctor please advice me?  Have emphesema and asd repair ( hole in heart) from childhood. As my oxygen goes to 70's/ 80's on exersion, the doctors have been testing my walking with ambulatory oxygen, to see if it boosts my oxygen levels up. They are now saying that my body is not responding to the ambulatory oxygen. It is not boosting my oxygen levels and apparently this happens in about 40% of people. Now if my body doesn't like the "help", is this not negative thing for me as isn't lack  of oxygen making my organs fail. Also they are still considering me for long term oxygen in the future so how will this work if my body doesn't like the ambulatory oxygen? Many thanks

2 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Sinead13Thank you for your response. On rest my oxygen levels are about 93/94. On exersion it can go down to 80's and sometimes 70's. It was a nurse i spoke to. Just said 40% of people do not respond to ambulatory oxygen and they are trying to find out why. What would be the reasons that i  wouldn't be responding to the ambulatory oxygen? It was a standard oxygen cannister i think 15 l. 
    In terms of my organs start to fail in low 70's 80's can you explain how this works and time frames please?
    Nurse just says because i am a unique case my body has adjusted to the low oxygen and manages but i am worried.


    What questions do i need to ask here?


    Many thanks1 day ago
  • Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)Well, I still honestly have no idea why that nurse would have told you that. That's not a statistic I've ever heard before, and no one I've asked has heard of it either. I'd be very interested to know where they got that number from.


    There are a couple of reasons why you might not respond as expected. I took a look back at some of your older posts, and you had previously mentioned that you still have a small hole in your heart. That could be allowing non-oxygenated blood to mix with properly oxygenated blood and reduce your overall oxygen level. I've read reports where people with sleep apnea or who live at high altitude, who can have low oxygen anyway, have even lower oxygen levels if they have certain holes called patent foramen ovales (PFOs). That could possibly be what's happening here. When you exert yourself, your oxygen drops much lower than it would without the PFO. 

    Time frames are extremely difficult to figure out, so I can't really give you any kind of advice there. However, I would personally not be accepting the answer that your body has "adjusted" to low oxygen and "manages." I would recommend asking exactly how much oxygen they used during the test (15 liters per minute is very high), if they have considered looking in more detail at the hole in your heart, and what their plan is to give you enough oxygen to keep your levels above 88% during activity is.1 day ago
  • Sinead13Many thanks. I will see what they say..18 hours ago
Kandy State Captain of South Dakota

Kandy State Captain of South Dakota Good morning its Monday again already where did the weekend go?  Its First Day of Spring but cant see it here anyway have a great week. 

2 days ago

Kristen Willard

Kristen Willard

Today is International Day of Happiness! Wishing you joy in small or large things (or both) today as you deserve it.

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainhttps://youtu.be/IyhA6_OP0h0


This is my cousin's latest release! I just listened to it for the first time. I love it! Enjoy! 🥰

2 days ago

Gina F

Gina F

Good morning all from ohio!😊 I want to ask if any of you have ever or are using the inhaler Breztri? I love it!!! What a difference 👏 in my breathing. Anybody found anything better? Desperate Grandma wanting to live.

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie B’s Kitchen to Yours

🌱RADISH SALAD🌱2 cups sliced radishes1/2 tsp. salt1 cup sliced red onion1 cups seeded, sliced cucumber 1/2 cup olive oil 2 tbsp. white wine vinegar 1 tsp. chopped fresh dill1 clove garlic, minced 1/2 tsp. sugarToss radishes with salt. Let...

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy first day of Spring!!! A time of renewal! May you be blessed with a wonderful day, friends! 🙂🌱🌞

2 days ago

mcat43

mcat43answered the question Just the FACTS on Peak Flow.

And my apologies for the spelling. For some reason on this iPhone- my spelling gets shoveled
Stephanie Williams, RRT (COPDF VP, Public and Professional Education)David Mannino, MD     (Medical Director, COPD Foundation )Bill Clark - Community Manager also answered the question Stephanie Williams, RRT (COPDF VP, Public and Professional Education)and 2 others also answered the question

3 days ago

Mellie

Mellieasked the question: Trelegy-I had switched from Anoro Ellipta to Trelegy Ellipta

Hello to all: I had switched from Anoro Ellipta to Trelegy Ellipta on the advice of my Pulmonologist February 19, 2023. I seem to be tolerating it fine, but I have noticed quite an increase in mucus. I cough some up out of the depths of my lungs about …

3 days ago

himeeee

himeeee

hi everyone! my husband has copd and i’m trying to support him the best i can, but i thought maybe you guys could help me as well. <br>we’re both struggling with the terminal-ness of it all. he only has about 20 years max left. how does one begin to comprehend that? if any of you have tips for tackling mortality it would be appreciated. <br>i look forward to understanding my husband’s condition better and how to support him best. <3

3 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • DebbieB.-Connecticut State CaptainI like what Bill has written. Very well put. 
    I never think of my last days on earth. I have COPD and very severe asthma. I always tell people that I can get clipped by a speeding vehicle grabbing my mail out of the box, the way people race around the bend. 
    My husband had colon cancer 2 years ago. He beat it. Now, he may have lung cancer, but we don't know yet. Every day I have faith and hope that he will be okay.
    Let's face it. This world is a mess. Extremely high prices, lots of diseases, rudeness, selfishness and greed.... My belief is live each day to its fullest!!! Be happy and look forward to tomorrow! 
    If we are diagnosed with an illness, we learn to face it head on and manage it! 
    Keep calm. Stay strong. Carry on. 💪3 days ago
  • das23Hi himeeee.....Welcome.....Bill and Debbie have given you great answers. I'll just echo them.  You can help him be as active as he can be--eat as well as he can--and take his meds as prescribed. I'm 71yo. I don't know if I have 20 years left and I don't spend much time thinking about it. I do what I suggested to you and I try to live a day at a time. It works pretty well for me. I have good life. I'm a lucky man. Hang in there--think positive. Glad you found us--there is a lot of support here for you and your husband👍✌3 days ago
  • Jean IA State CaptainNo one has an "expired by" date stamped, even in some place you can't see!  What happens to your husband now depends on luck and to a much greater extent, what you and he do.  Getting your affairs in order is always a good idea (I'm getting ready to re-do a lot of mine because things have changed in the last 15 years), so I think doing that is always a good priority.  I think one of the things you should do is learn a lot more about COPD than you know now, starting with the material in the "learn more" tab above.  The more you know, the better you can deal with whatever's coming, whenever it happens.  Learn what he can do now to improve his life now, and chances of a much longer lifespan.  If you don't have a good pulmonologist who is encouraging and positive, change to one who will work with your husband to help him find the best treatment options and encourage him to make the life-style changes that are critical to living well with COPD.   Many of us have lived for a lot longer than anyone would have anticipated because of good docs, good meds and the life-style changes we made......and a positive attitude, which is probably the most important thing.2 days ago
donoc

donoc

Let's look at my last post!  Someone thinks I'm getting high on my own supply :)  But the truth may be that COPD is taking a back seat and I have other things on my mind other than: "Woe is I".  I really do miss having kids around.  I was a young father and given a second chance and life experience I'd be a great dad.  I was good though.  The medical establishment says the wife at 75 can't have more kids :(  Are we going to believe that medical problems can't be cured.  (and some are even progressive)  Or are we going to keep trying no matter what they say?  Of course we are.  So I'll keep working on having more kids and living long enough to raise them.  Cheers, Don

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