Community Announcements

Community Announcements

The PaTH Clinical Data Research Network is
conducting a research study and wants to know about patients’ experiences with
health and illness. By sharing these stories with researchers, we hope to focus
research on topics that are of importance to patients and likely to improve
health and health care. Using MyPaTH Story Booth patients can record a conversation
to share with researchers. They would love to hear your point of view. You
can reach them at: 412-864-3025 to learn more.



How:
Share
your story by phone

Who:
If
you are 18 years or older and able to read and understand English you may be
eligible

Phone:
412-864-3025

Email:
mystory@pitt.edu

Facebook: MyPaTH Story Booth Twitter: @ThePaTHNetwork

3 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Thinking about a vacation to Mexico.

I just noticed you mentioned you are mild. You might not even noticed it. Most of us here are severe or very severe so our experience isn’t necessarily applicable to you. I had no idea I had COPD when I was mild. Most likely I would of had a great time …

17 minutes ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Thinking about a vacation to Mexico.

If you were to search this site for “humidity”, you will see lots of people saying they have a hard time breathing when it’s humid out (when the dew point is high). I don’t think anything bad would happen, just that you might end up inside with the air …

35 minutes ago

Derek Rooney

Derek Rooneyanswered the question The Cure for COPD...

I have been diagnosed with COPD (chronic obstructive pulmonary disease) and my doctor has given me Seebri Breezhaler, it's an inhalation powder 44 micrograms. I take it once a day in the morning. It's a great help to breathing, it's a new medicine on …

1 hour ago

Its hard

Its hardasked the question: Severe COPD and blood pressure

Hi everyone, my mum has severe copd and palliative care at home. She has suffered extremely high blood pressure for many year, for the last week her systolic sitting on her usual of 160 above but diastolic has dropped down under 75, very unusual for mum. …

10 hours ago

Penzmagichands

Penzmagichandsasked the question: Thinking about a vacation to Mexico.

I am not on oxygen , I have mild COPD and thinking about a vacation to Mexico. In late July or early August. Is this a good idea or not? I don't want to go then have problems. Anyone have any experiences with traveling to high humidity and heat places?

11 hours ago

Kmcnamara68

Kmcnamara68asked the question: Anemia

Has anyone found out that they were anemic? If so, did treatment for it help lessen breathlessness? Thank you for responding in advance.

13 hours ago

Louise s

Louise sanswered the question Is there any correlation of inhaled corticosteroids and thinning skin?

If your skin is thin and bruises and tears easily, don’t use Band aids...they will tear your skin more. I use “horse bandaging”. It sticks to itself, but not your skin..

13 hours ago

DoYouNeb2

DoYouNeb2

Does anyone know where to donate Medicine in the NYC area? My mother recently passed away and has medication that she wouldn't have wanted to go to waste. I would like to donate them to someone who can use them. If there is anyone who might be able to use them I would like to get in touch. 


Albuterol (for nebulizer)
Pulmicort(for nebulizer)
Tobramycin (for nebulizer)
Proair inhaler (Albuterol sulfate 90 mcg)
MethylprednisoloneEthambutol 400mg tabs
Ibandronate SodiumAzithromycinAlprazolam 0.25

15 hours ago

Colinjohn

Colinjohn

Hey guys. My doctor has diagnosed me with Emphysema. I am at a bit of a loss as i have no symptoms what so ever, according to internet i should have a cough, wheezing etc. i feel absolutely fine. is this usual ?

16 hours ago

Caroline

Carolineanswered the question stomach problem with copd

As Bill has mentioned the lungs become hyper inflated or you get "long lungs". The things that you eat can cause this as others have mentioned. The last time this happened to me it was due to my lung leaking into the cavity which led to a lung collapse. …

18 hours ago

Jimmy S

Jimmy SGood Morning from NOT SO SUNNY California. Rain and more rain and more rain😥Hope everyone is having a blessed Sunday.
“Sunday clears away the rust of the whole week.”

“Wherever you go, no matter what the weather, always bring your own sunshine.”😎

18 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question stomach problem with copd

Has she seen a doctor? There are many possible reasons for abdominal swelling with pain, and would require testing to determine the specific reason in her case.

21 hours ago

MichaelS

MichaelSanswered the question Home Hospice - Your Experience

I was moved to home hospice care about a month ago following a two week stay in the hospital. My fev1 was 17 prior to that exacerbateion and recovery was slow but complete. The hospice people took over my care and I feel better than I have in years. I …

23 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question stomach problem with copd

What has her doctor said? If you haven’t spoken I would suggest that you do that especially because she has pain.

23 hours ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question CBD Oil-any insight

CBD is all over the social media and was on the world news the other night. SD had passed it in January and determined its now illegal cause of some gray area. Sounds like officials are confused on what to do. Mainly for pain and inflammation is what ppl …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question stomach problem with copd

1. “Long Lungs” For many people with COPD, the lungs can slowly become hyperinflated (aka over inflated). Hyperinflated lungs are sometimes called “long longs”, and are a result of the lungs becoming less elastic over time or from being unable to fully …

1 day ago

Made Pramana

Made PramanaHi! Sorry I haven't been here. I wrote something about my experience being a medical student and also a patient with chronic illness. Here is the link. Have a nice day! 😊 https://themighty.com/2019/05/challenges-of-being-chronically-ill-and-a-doctor/

The Challenging Reality of Being a Chronically Ill Doctor

A woman who is living with bronchiectasis while studying to become a doctor, shares the ups and downs of what it's like to care for your own health and others' at the same time.

1 day ago

BeccaAnn

BeccaAnn

Hi. The doctor humored me and ordered a chest x-ray, though she said it wasn't necessary and that I was fine. I have had a few viruses since fall and have coughed for months.  I got a call saying the x-ray was normal and was relieved, but the report became available, and the x-ray shows somewhat hyperaerated lungs and suggests a CT might be helpful. From what I read, this means COPD, as I don't have asthma. I am active, under sixty, and have never smoked.  I've always been a worrier but have always been healthy. I haven't seen the specialist yet, having thought I didn't need one and was just worrying unnecessarily.  Scary. 

1 day ago

courageous mom

courageous momasked the question: stomach problem with copd

does anyone know why the stomach would be full , extended for weeks , with copd? my mothers stomach is in pain and extended. no problem with bowel movement.

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question COPD

About 2 years ago I had a lung xray, it came back somewhat normal, minus the Hyper-Inflation and The ER Doctor said, you dont have anyone but yourself to BLAME!

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question COPD

Docs shouldn't do a lot of things, including not treating people with COPD even if they are still smoking. We'd all like everyone to quit, but many people have tried and tried and just haven't ever been successful. That doesn't mean they shouldn't get …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Just want to thank Bill Clark for keeping the community safe🤘

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question exercise

One of the things you'll probably hear is not to over do it. And that's probably not bad advice if you haven't been exercising for awhile. However, you know what you were doing before you got the diagnosis of COPD, so there's absolutely no reason not to …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question exercise

One key to it is learning how to breathe when exercising. That was where the respiratory therapist helped me. Do not hold your breath, that’s not healthy, remember to breathe. Do long slow exhales to clear the CO2 out of your lungs. Breathing is real …

1 day ago

edpe77

edpe77Yes
ed

1 day ago

BobSF

BobSFanswered the question exercise

My sincere thanks for your detailed, informative response. I've been bike riding, lifting weights for years before I came down with COPD. Ever since I read the warnings about overexertion, the stress of worrying about possibly damaging my lungs …

1 day ago

Beezer

Beezeranswered the question COPD

I was in the hospital and the doctors just threw their hands up in the air and where very rude to me. I almost didn’t want to go back but I have no choice. They found out out I was still smoking

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question How did you quit smoking?

That cycle of quitting going back quitting, knowing you need to quit not being able to do it is itself a enormous stress inducer. Once you do quit all that stress all that worry and anxiety goes away. Look for a free tobacco cessation support …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question exercise

I am not sure over exerting yourself should be a avoided unless your have some other condition that is a concern or you are not yet in shape. I have been exercising pretty intensely with the consent and advice of my pulmonologist who is the one that has …

1 day ago

Beezer

Beezerasked the question: How did you quit smoking?

Having a hard time stopping... when I get anxiety or stressed I keep going back

1 day ago

Sheila P.

Sheila P.answered the question COPD

Yes he is under a Pulmonary doctor care and he was going alone. We are going with him cause his breathing has changed and we have questions and concerns why a pump was not authorized. It seems as though he needs help breathing. He cares for my mother who …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Before taking any supplements, or doing any types of inhaled treaments, Research it first with Mayo Clinic, Drugs.com and your Doctor and Pharmacist. Dont try or do something you cant reverse.

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question COPD

Hi Sheila, Welcome to 360Social.Is your father’s doctor a pulmonologist? Has he had any pulmonary function tests?To qualify for oxygen he would have an overnight oximetry test and to qualify for ambulatory oxygen, he would do a 6-minute walk test. The …

1 day ago

Sheila P.

Sheila P.

Numb

1 day ago

Sheila P.

Sheila P.asked the question: COPD

My father is 88yrs old and have been a heavy smoker since age 16. He has recently been diagnosed with COPD. His breathing is faster, he coughing up alot of of heavy mucus. He wont stop smoking and we tried it all with him. He has been attending his Dr …

1 day ago

BobSF

BobSFasked the question: exercise

I've been trying to find a clear answer on whether over-exerting oneself from, for example, weight lifting causes permanent lung damage and worsening COPD for the rest of my life. Everything I've read on the internet says that over-exertion should be …

1 day ago

Jimmy S

Jimmy SHappy Saturday from NOT SO SUNNY California today. Hope it is nice and sunny and pleasant where ever you are today. Have a nice day. An remember: “Don't let yesterday take up too much of today.”😎

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Confused with the diagnosis. Do I have COPD?

The pulmonary function test is only as good as your ability to perform the test and that is dependent on a number of factors. There is a chance on another day with another tech administering it, the test results could be different. That has happened with …

1 day ago

F Kozik

F Kozikanswered the question Anyone using Symbicort and Spiriva?

New to COPD Foundation. I'm an ex smoker since 2003. It wasn't until 2015 that I started having breathing problems. I use Spiriva and Symbicort with no side effects. My Doctor told me to use the Spiriva first and wait 5 minuets for the Symbicort. YouTube …

2 days ago

Carrieanne

Carrieanne

Hello All, I just luckily found this site while searching for COPD info. Just diagnosed and like others on here in the same position, I’m extremely stressed out by it. Compounded with my hsbd. and kids being angry about it, it’s been overwhelming. I do have a question regarding oxygen therapy. Has anyone used the Innogen portable unit. I have the in home typical large unit wit long hose right now. I want to start venturing out as being homboundis making it worse. Does the pulse delivery work as well. I am on 2 liters. Any thoughts would be really helpful. I would think a patient rather than a physician would know better. Thank you so much in advance. So grateful I found this site, i have been reading so many hopeful stories for the last 3 hours.

2 days ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Bill66 - Bill Wornstaff NJ State Captain seattleite, I agree with LFAOMGA well put🤘1 day ago
  • seattleiteLFAOMGA​ I am sorry that it still bothers you that you were angry. I think that is perfectly natural. Everyone wants to protect those that they love and when they feel powerless it can cause immense anger and guilt. My mother felt guilty for getting COPD and I felt guilty that I couldn't cure her. We eventually came to the conclusion that the guilt was causing more pain and the last several months we, as a family, tried to live each day for each day without regret. Unfortunately, it is the ying and the yang, joy and sorrow. We all must live through it and each in our own way. Anger and denial are quite simply another face of love. We all wish that everyone, especially those that we love the most, will live forever. That would cause this planet to be a very crowded place. They do live forever in our thoughts and hearts. We see them sometimes in others or places that bring back those cherished memories. 1 day ago
  • LFAOMGASeattleite, What bothered me the most was that I couldn’t fix it. It wasn't even so much being angry, it was being completely frustrated that I couldn’t do anything about it. I was (and still am to some extent) the family fixer.  You know how we all have our “role” to play in our families? Well mine was the fixer, even though I was the youngest in the family.  I took time off work to be the caregiver for my mom when she was in intensive care for 3 months at the hospital. No matter what, I couldn’t do anything to make her better. My father and I had to make the horrible decision to finally remove life support. At the time I felt like I killed her. The grief was overwhelming.  After that I moved back to Ohio from California to do home hospice for my sister (brain cancer), and eventually for my father (non-Hodgkins lymphoma and leukemia). I couldn’t fix any of them and it truly frustrated me. But with each subsequent situation I learned that I wouldn’t be able to fix it .  You can’t fix death when it comes knocking at the door. 18 hours ago
das23

das23answered the question Confused with the diagnosis. Do I have COPD?

Hi PVRTE.....Don't make yourself crazy with worry--it won't help anything. I'm no Doctor-just a COPD patient but with those test results and your age I think it is unlikely you have COPD. You quit smoking-that is HUGE-Don't ever start again. Maybe the …

2 days ago

PVRTE

PVRTEasked the question: Confused with the diagnosis. Do I have COPD?

Hi everybody, luckily stumbled upon this website trying to locate information about whats been going on with me. I'm 33 years old and was a day a pack smoker for almost 11 years and quit about 1.5 years ago. I'm not over weight and I walk a mile a day on …

2 days ago

joney

joney

its been a good day so far i'm late checking in I didn't get a lot done  just moving very slow today😄

2 days ago

das23

das23answered the question NIV

Keep asking all the questions you want----You help just being here

2 days ago

Jimmy S

Jimmy SFor patients with chronic obstructive pulmonary disease (COPD),
getting an infection can make their breathing symptoms much worse.
Infections are also the most common cause of acute exacerbation's, which
are also called COPD flare-ups. These happen when COPD symptoms
suddenly get much worse and may require hospitalization to treat.
Good hygiene includes habits and practices that help maintain a
person’s health and prevent diseases from spreading. Many infections and
diseases are caused by germs, such as bacteria and viruses. Germs can be spread by: Touching a person who is carrying infectious germs
Touching a surface that a person with germs has recently
touched
Breathing in germs in the air
How can good hand-washing habits reduce the risk of infections?
Frequent and thorough hand washing with soap and warm water is a simple
and very effective way for COPD patients to avoid many types of
infections. The first step is to get in the habit of hand washing in the
following situations: When hands are dirty
After using the toilet
After touching another person
After coughing, sneezing, or nose-blowing
Before and after making food
After eating, drinking, or smoking
COPD patients should be extra careful about hand washing if they spend time in the following places:
Healthcare settings such as clinics, hospitals, or doctor’s
office
Schools
Workplaces

Crowded areas such as malls, airports, or airplanes
Breathe Easy and Have a Nice Day......😎💖

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Information from American Thoracic Society's annual meeting

I don't have any specific question other than you share with us what you have learned there, which I know you would do. What is O2 meeting about, is the focus on equipment, access, or saturation and anything new they might learning about it?

2 days ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question NIV

Non-invasive ventilation (NIV) can be very effective for those with COPD...not just CO2 retainers. Especially after an exacerbation it takes some load off the lungs and allows them to heal quicker. As you already found out, it will also help with CO2 …

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question NIV

What do you mean by NIV, are you referring to a non-invasive ventilator like the Trilogy unit? I don't think that would be dangerous but it is something I would talk to the pulmonologist about rather than just the PA.

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.