COPD360social welcomes new member Ambervw4326 who joins 65,699 current members of our community. Weโ€™re glad you're here!

COPD239now

COPD239nowanswered the question Check-in: How Summer Heat and Humidity Can Affect COPD

I use a hand held fan, not just in the hot weather it also really helps when your struggling to breathe. It really does work extremely well.
Jamie Jarrard (COPDF Sr. Communications Specialist)HIcopd - Hawaii State CaptainAurieland 5 others also answered the question Jamie Jarrard (COPDF Sr. Communications Specialist)and 7 others also answered the question

3 hours ago

Totally Terri

Totally Terri

Spent yesterday at urgent care AGAIN. Already had two rounds of steroids and antibiotics in less than a month so the doctor wouldnโ€™t prescribe more. Just coughing up crud. Literally made an entire Walmart order of facial tissue so I can have it everywhere. Donโ€™t see my pcp until the 9th. Sheโ€™s only in the office twice a week. Anyway exhausted after the neighbors did big illegal fireworks until 1 AM. No respect for the sick, the elderly, the very young, or pets. Ugh. 

5 hours ago

Wildebeest

Wildebeestanswered the question Does anyone have constant Air hunger/sighing dyspnea

You might have a breathing pattern disorder. That can be inmproved. I would suggest maybe seeing a respiratory physiotherapist before writing this off as anxiety, which I find is a very useful catch all for medics when they don't really have a clue. I …
Mike99Young98 also answered the question Mike99and 1 other also answered the question

7 hours ago

sammie49

sammie49

Ok so, in 2015 age 38 I had full lung function test and was told my lungs at the time were 68. I'm now 49 and have just had full lung test and been told my lungs are 79 and I have copd. Is it possible to determine rough prognosis from this as thats all they have told me until my next appointment in a weeks time

8 hours ago

  • NewestOldest
  • WildebeestI am not sure what you mean by lungs of 68 and 79. Is that some sort of relative 'lung age'? That is not a normal medical parameter as far as I know. Nevertheless if it is an age thing then your lungs remain at the same relative age to you, so deterioration has not speeded up. If the figures are instead some sort of functionality then on the face of it a shift from 68 to 79 looks like a big improvement. I hope they are able to give you more helpful information at your next appointment. But please bear in mind that it is really difficult to apply any sort of prognosis to COPD. A diagnosis feels very final and dangerous when you get one, but in reality you can go on for ages without any significant deterioration and there is a lot you can do to help yourself.  Check out all the information on this site, especially in the Learn More section.7 hours ago
  • DebbieB.-Connecticut State CaptainWhen I had hand held spirometry tests, I remember the results would give a "lung age". The best thng to do is to wait and see your pulmonologist. You will discuss the test results, and it will be determined which medications you will need, if necessary. Best of luck to you!6 hours ago
  • sammie49Thankyou Debbie xx3 hours ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Sunday, everyone! Wishing all of our friends a lovely day! 
May you find many of life's simple pleasures! ๐Ÿ˜Š

11 hours ago

Totally Terri

Totally Terri

My pulmonologist finally admitted he had no idea how to help me THEN PROMPTLY DROPPED ME after years of my being his patient and two weeks ago tons of blood, urine, and even biofire sputum came back negative.  Heโ€™s talking about a lung biopsy. I am on blood thinner and have a history of PEs so Joe Blow doctor at everyday hospital is NOT doing that to me.   I vaped nicotine for four months in 2014 until I got phlebitis. In the 80s, I hung out w the cool kids which you guessed it smoked!!  Even though I didnโ€™t. I have been in and out of urgent care and ER repeatedly.  I have been told to go to Cedars or UCLA. I was told today in urgent care after xrays I am full of โ€œold damageโ€. That my lungs have been โ€œshredded to fluffโ€. Even though I am running a fever, the doctor didnโ€™t put me on a third round of steroids and antibiotics this month. He checked to make sure I had no clots and had not had a heart attack. I didnโ€™t and hadnโ€™t. Anyway my pulmonologist turned my file back over to my medical group w every code for lungs ever. COPD ASTHMA OVERLAP AND EMPHYSEMA being the big ones.  I am on Stiolto at night. Air Supra for emergencies. And Levabuterol three times a day for now.   I am very scared. I am on 2 liters of oxygen 24/7.  Have been since being hospitalized w pneumonia in January. Had bronchitis in October.  I got prior authorization to get RSV vaccinated. I am 55. Scared to do it.  Know itโ€™s a dead virus. Just scared. My rheumatologist said to do it. Heโ€™s had people hospitalized in intensive care w RSV. I am obese. I am hoping I qualify for the 18 months of $50 a month GLP1s. I gave up my CPAP. I barely qualified for it and the struggling to exhale no matter how I adjusted it made me feel like I was going to die. I was told perhaps a bipap would be appropriate in the future. 

19 hours ago

  • SassycatStiolto is a maintenance med. You can take it any time of the day.41 minutes ago
HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Does anyone else get leg cramps from their meds?

I had a patient who swore by a dab of dry powdered Colemanโ€™s mustard on the tongue instantly relieved her leg cramps when swimming. She kept it in waterproof container on side of pool when swimming.
GAnneKim HDebbieB.-Connecticut State Captainand 5 others also answered the question GAnneand 7 others also answered the question

20 hours ago

GAnne

GAnneanswered the question Wildfires + Apartment Search

Good luck finding somewhere safe, where you can feel comfortable
brydy also answered the question brydy also answered the question

21 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Local Safeway had St. louis ribs (already prepared & hot) for $5 per rack of like 6 ribs!  We had some for breakfast with some toast. Yum!  Also got a top sirloin steak @$5/lb, one for cooking in near future and one for possible freezing. 

21 hours ago

Young98

Young98asked the question: Does anyone have constant Air hunger/sighing dyspnea

Ive been dealing with a constant urge to take deep breaths, sighs, or yawns and im wondering if this is a common symptom of copd or more of an anxiety thing.

23 hours ago

brydy

brydy

Turns out eating our veggies, in particular kale & spinach might actually help lungs be healthier! Maybe Debbie has some good recipes for us. I just steam kale very lightly & put it in my blender shakes water & all. heres the study from Australia. 


https://www.sciencedirect.com/science/article/pii/S0002916526001334?via%3Dihub

1 day ago

Mike99

Mike99asked the question: Wildfires + Apartment Search

The wildfire smoke has returned to Chicago. Even though the aqi is less than last year, it is a painful time. I am struggling to find a suitable, affordable, and nice neighborhood apartment where I feel comfortable. Unfortunately, due to the lung …

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐ŸŽ†๐Ÿ‡บ๐Ÿ‡ธ Happy Fourth of July from all of us at COPD360social! โค๐Ÿค๐Ÿ’™

Today is a wonderful reminder to celebrate the people, moments, and freedoms that bring us together. Whether you're spending the day with family, friends, neighbors, pets, or simply enjoying a quiet moment at home, we hope your day is filled with smiles and special memories.

As you're celebrating, remember to celebrate your health too. July heat, humidity, smoke from fireworks, and poor air quality can make breathing more challenging for those living with COPD, as well as caregivers who are helping loved ones enjoy the day.

A few friendly reminders:
๐Ÿ’ง Stay hydrated.
๐ŸŒณ Take breaks in the shade or enjoy the air conditioning when you can.
๐Ÿ’Š Keep your inhalers, oxygen, or medications close by.
๐ŸŽ‡ If fireworks or smoke tend to bother your breathing, there's nothing wrong with enjoying the show from indoors or watching one on TV.

The best celebrations are the ones where everyone gets home feeling their best.

However you're spending today, we'd love to celebrate with you! Share a photo from your Fourth of Julyโ€”your family, your favorite meal, your decorations, your pets dressed for the holiday, or simply the view from your porch. Every celebration is welcome here.

Thank you for making COPD360social such a caring, encouraging, and supportive community. Wishing you a safe, comfortable, and Happy Fourth of July! ๐Ÿ‡บ๐Ÿ‡ธ๐ŸŽ†

1 day ago

GAnne

GAnneanswered the question Does anyone eat a protein bar, shake, to gain muscle after walk

I forgot to tell you I walk 1.5 to 2 miles a day every day and do strength with bands snd 2 lb weights maybe 3 times a week and some strength excerise. I also had a torqued esophagus in March it was dilated to 57. Still have reflux which can also come …
Karen Deitemeyer - Florida State Captain also answered the question Karen Deitemeyer - Florida State Captain also answered the question

1 day ago

GAnne

GAnneasked the question: Does anyone eat a protein bar, shake, to gain muscle after walk

When you drink water all day and nothing else and walk, you lose weight is anyone doing a protein bar or shake afterwards? What do you do?

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

That's awesome, Karen! You can use a different flavor of Jello mix, different food coloring, and different sprinkles to suit your needs. Be sure to save a few for yourself, just to try...๐Ÿ˜‰...

2 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

I'm saving this recipe and going to make it for our next Ladies Luncheon here - it sounds delicious!!...

2 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question Does this mean it's getting worse

Were you prescribed oxygen? What are the circumstances when oxygen drops to low 80s? If you are active at the time immediately before the drop, does it rise to a normal saturation? It's not unusual for us to drop to the 80s when active and then have it …
das23WildebeestCaroline West Virginia State Captainand 2 others also answered the question das23and 4 others also answered the question

2 days ago

puglover

puglover

At one point, they were saying I was a heart failure patient and then said no???????I'mI'm new here. N,ot sure how all this works. I have been told I have mild emphysema, then COPD, and then chronic bronchitis. Whatever it is I need help. The shortness of breath, coughing, and wheezing have been almost nonstop for months now. Constantly going to my PCP, heart doctor, and an occasional lung doctor visit. Those are hard to get. One says it is my heart; the other says no, it is the lungs.
I have been on several inhalers and a nebulizer. These only give minor relief. I also have gained almost 20 lbs since stopping smoking and using prednisone, hoping to clear up chest congestion. Nothing is helping.  I stay exhausted after just walking a short way, trying to do normal housework. I'm depressed because the doctors do not seem to care.  Now my feet and ankles are swelling twice their size, and all the PCP said to do was weigh myself each day and come back in a week. 
Has anyone else had this happen? At one point, they were saying I was a heart failure patient and then said no???????n to them?  At one point they were saying I was a heart failure patiant and then said no???????

2 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Karen Deitemeyer - Florida State CaptainHello and welcome pugloverโ€‹.  I'm sure it's very discouraging and frustrating to get conflicting opinions on what's happening to cause your issues.  Do you live anywhere near a large medical center, such as National Jewish in Denver, or one of the Mayo Clinic locations,  or The Cleveland Clinic?  It sounds as if you may need to be evaluated by a team of physicians to determine exactly what the cause is.


    Are you watching how much liquid and sodium you are consuming?  If you are a heart failure patient, that's extremely important, and may be the cause of your swelling.  


    If your breathing continues to be difficult and the swelling continues, please go to the ER.  


    Please keep in touch and let us know how you are doing.



    2 days ago
  • JeanO53Hello pugloverโ€‹ - The others have given you great suggestions.  I too am a patient and not a healthcare provider.  
    - I have a question... What tests have you been given?
    .. To diagnose COPD (emphysema or bronchitis)  pulmonary function tests are needed.  At the very least you will need a spirometry test.  This is the definitive test for COPD.
    .. For my diagnosis, my doctors ordered the pulmonary function test AND an echocardiogram.  The echocardiogram was to check for Chronic Heart Failure (CHF) - to see if that was causing my shortness of breath.
    .. If you've not had these tests done, I suggest you request them.  It's important to know what is causing your symptoms in order to determine how to address the causes; what medications are needed.  It could be that you have both CHF and COPD.   The shortness of breath, coughing and wheezing would seem to indicate lungs.  The constant swelling in your legs could indicate the heart.
    .. One of the things I've learned is that I/We have to be my/our own best advocate.  Ask for what you need.  Be specific about your symptoms and when they occur.  Being a better prepared patient can help your doctors be better healthcare providers.2 days ago
  • HIcopd - Hawaii State CaptainMy husbandโ€™s lung doc is trying to help sort out what part of my husbandโ€™s breathlessness is from heart and what part is from lungs and what may be something else.  He ordered a bunch of tests:  a pulmonary function test, arterial blood gas test (ABG), echocardiogram, chest CAT scan, and also a Cardio Pulmonary Exercise Test.  The doctors are going to look at all the results and help figure out whatโ€™s going on.  They are hopeful with the test results they will be better able to figure things out.1 day ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐Ÿ”ดโšช๏ธ๐Ÿ”ตEASY PATRIOTIC COOKIES๐Ÿ”ตโšช๏ธ๐Ÿ”ด1 package white cake mixOne 3-ounce package blue raspberry Jello mix1/4 cup butter, softened 4 ounces cream cheese, softened 1 large eggFew drops blue food coloring Vanilla frosting Red, white, and blue...

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from our good friend Miyagi, who is all grown up now! Seems as though she's enjoying her secret hideout! We wish everyone a wonderful day! ๐Ÿคฉ

2 days ago

Tom.E

Tom.Eanswered the question sleeping pill/anxiety

I read an article lately about what RNs keep in their home medicine cabinet and one keeps Magnesium Glycinate supplements to help with their sleep. Seems to help some folks. Might be worth looking into after a talk with your doc.
HIcopd - Hawaii State CaptainSDMlizjband 3 others also answered the question HIcopd - Hawaii State Captainand 5 others also answered the question

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿพโค๐Ÿค๐Ÿ’™ Happy Fluffy Friday from the COPD360social K9 Caregiver Team! ๐Ÿ’™๐Ÿคโค๐Ÿพ

Hi, friends! We're Jasmine and Jag, and we've been assigned an important mission for the holiday weekend.

๐Ÿพ Make sure you get plenty of rest.
๐Ÿพ Remind you to stay cool and hydrated.
๐Ÿพ Encourage lots of smiles.
๐Ÿพ Help you avoid overdoing it.
๐Ÿพ Keep an eye out for extra treats. (We're still working on that one.)

As many of us celebrate the Fourth of July weekend here in the United States, we know it can also bring heat, crowds, fireworks, and busy schedules. Your four-legged caregivers have one simple reminder:

โค Take care of yourself first.

If loud fireworks aren't your favorite, that's okay. A quiet evening, your favorite chair, a cool drink, and a loyal companion can make for a pretty wonderful celebration.

Now we'd love to meet the rest of our COPD360social K9 Caregiver Team! ๐Ÿถ๐Ÿฑ๐Ÿฐ๐Ÿฆœ

๐Ÿ“ธ Share a photo of your furry (or feathered!) caregiver and tell us...
What would their official job title be?

๐Ÿพ Chief Snuggle Officer?
๐Ÿพ Director of Nap Enforcement?
๐Ÿพ Medication Reminder Manager?
๐Ÿพ Firework Comfort Specialist?
๐Ÿพ Head of Tail-Wagging Services?

From all of usโ€”especially Jasmine and Jagโ€”we wish everyone a safe, relaxing, and happy Fourth of July weekend! ๐Ÿ‡บ๐Ÿ‡ธ๐Ÿพ๐Ÿ’™

2 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

My relative works at a bank and sent out this message about scams:
The Fourth of July is a time to celebrate with family and friends, but it's also a favorite time of year for scammers... They know banks, agencies, and offices will be closed, making it harder for you to verify anything before acting. Here's what to watch for and how to stay protected:
โ€ข URGENT MESSAGES ARE A RED FLAG - Watch for texts or emails claiming to be from the IRS, a government agency, or a financial institution, warning of an emergency like a locked account or unpaid taxes that need immediate action. Real agencies and reputable financial institutions will never pressure you this way.


โ€ข HOLIDAY LINKS CAN CARRY MALWARE - Fourth of July e-cards, fireworks videos, and social media "deals" are common vehicles for malicious links. If something looks too festive to be real, treat it with caution.


โ€ข VERIFY BEFORE YOU TRUST - A message from a friend on Facebook, Instagram, LinkedIn, or by text could come from a hacked or cloned account. Even genuine friends can unknowingly forward malware. When in doubt, confirm directly with the person before clicking.


โ€ข PROTECT YOUR PERSONAL ACCOUNTS - If you receive a message about your bank or card accounts, do not click any links or call any numbers included in it. Call your financial institution directly using the number on your card or their official website to confirm.


โ€ข LET IT WAIT! - If you cannot verify that a message is legitimate and the sender is closed for the holiday, let it wait... A real issue will still be there when they reopen.


Please enjoy the holiday weekend with your ohana and keep your guard up along with the fireworks...
Mahalo for keeping security a priority,

2 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Just read about an app that uses AI to help detect early exacerbations of asthma & COPD. Itโ€™s still in clinical trials but promising.
https://www.iosconews.com/news/nation/article_44ef7160-1dfb-500a-9e77-f923b5925103.html

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWishing all of our members well, and hoping those of you in areas of extreme heat are managing well, and pulling through! 

2 days ago

Anonymous

AnonymousWhat's great day to be alive.No matter how bad your life seems to be with COPD and all of the spin off goodies It lays on us please stay strong and remember tomorrow may be that day where it all turns around.We all here have so much to PF10 about and justafibly complain about but it could definitely be worse,thanks  we all have each other to keep us grounded.Remember to crank the tunes deep breath smile and repeat.

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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.