COPD360social welcomes new member Angela0829 who joins 59,943 current members of our community. Weโ€™re glad you're here!

Bill Clark - Community Manager

Bill Clark - Community Manager

DO NOT POST ANY TEST RESULTS until you have completed all your tests AND spoken to your own doctor or medical team and gotten a diagnosis! This is for your protection and ours.  Your doctor has access to all your medical records and we do not.  Interpeting partial results can often lead to a incomplete, or inaccurate diagnosis. This can cause you emotional harm and present liability concerns for us.  

Once you have completed your testing and spoken to your doctor we will be happy to help you understand the implications of your diagnosis and help you move forward, If you post any results without going through the proper steps your post will be deleted  and possibly your membership.

14 hours ago

Caroline West Virginia State Captain

Caroline West Virginia State Captain

Well, as it turns out, I was not imagining that there was something very wrong with my stomach.  The ultra-sound reveals an enlarged bile duct.  The technician and my PC say this indicates that I have recently passed gallstones. It is being left up to my gastroenterologist to prescribe treatment if any is necessary.


I have previously complained that the appointment is not until August.  Since it took this long to get the report, August seems reasonable.


It is encouraging to know that I have not turned into a wuss.  I have a renewed commitment to being the best that I can be.

56 minutes ago

DebbieB.-Connecticut State Captain

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

โœด๏ธ๐Ÿ‘PEACH COOLER๐Ÿ‘โœด๏ธ1 medium ripe peach1/4 cup freshly squeezed orange juice 3/4 tsp. sugarIce1/2 cup club sodaPeel and pit the peach. Place in a blender, along with orange juice and sugar. Blend until smooth. Add some ice to a tall...

3 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Wednesdays don't just show up on your doorstep. They slither in slowly as you wake up in the morning. So, by wearing a smile and spreading joy, you will be successful in starting your day out right. 
Never give up the fight! It's all of us against COPD!! WE WIN!!!

7 hours ago

Claudimaudi 1966

Claudimaudi 1966commented onMilk Products and Mucus in COPD

HiI too have the sticky rubber kind of mucus and wonder why and what that is?!It's pretty scary to know that's coming from my lungs. No wonder I can't breathe ๐Ÿ˜ž ๐Ÿ˜ญ ...

12 hours ago

RuthieGunter49

RuthieGunter49

I'm grateful for having found this site. It's a lonely disease,  hard to understand unless you're suffering through it, be it a patient or caretaker. Alot of knowledge available. I am 49 years old and I was diagnosed with COPD in 2022. I also quit smoking prior to finding out. I have severe emphysema. My Pulmonologist said that smoking contributed but it is far from being whatever caused this kind of damage.  I am a lung transplant candidate.  I seem to be having some serious anxiety and claustrophobia issues,  has anyone else dealt with that?!? If so, how did you cope?? 
I have been through Pulmonary rehab and it helped me out tremendously.  I had 3 days left and I caught Covid. It wiped all of the progress I'd made, out. I tried to re-enter after I suffered from a MI in October but my insurance would not cover it. They tried to get me in for Cardiac rehabilitation,  that wasn't covered either.  I received a 30 minute video for a Pulmonary workout.  I ordered ankle weights and 2 - 1 pound dumbbells.  It works. 
I have to continue to educate myself... I thought it would be more fun joining an online group rather than trying to read ALOT of overwhelming information!!!! ๐Ÿ˜… 
Have a great day everyone.. 

20 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question If I need 4L/min on a flight but can only get 2L/min from approved devices, what are the risks?

To add to Bill's excellent explanation of the settings on the Inogen G5 - here's a link to the Running On Air website's complete list of all current POC's and the actual amount of oxygen each puts out at their settings. https://runningonair.net/pocs …
CherNYJonnie Korinko (COPDF Manager of Public and Professional Education)Caroline West Virginia State Captainand 2 others also answered the question CherNYand 4 others also answered the question

1 day ago

Alyssa Dittner

Alyssa Dittneranswered the question Hereโ€™s my results from a routine cat scan โ€”- anyone have any advice ?

Its never to late to quit smoking. We are unable to reverse damage, however, everything a person does in their life is accumulative. Meaning our body cant take a beating until all of a sudden it reaches a peek and then people start noticing symptoms like …
David Mannino, MD (Chief Medical Officer, COPD Foundation )Bill Clark - Community Managermankeegna55and 1 other also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 3 others also answered the question

1 day ago

Alyssa Dittner

Alyssa DittnerGood morning! I wanted to share this blog post about how a COPD and bronchiectasis diagnoses inspired a loved one to get involved in her community. 
  https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/195/Respiratory-Therapist-Turns-Personal-Connection-to-Bronchiectasis-into-a-Passio

Respiratory Therapist Turns Personal Connection to Bronchiectasis into a Passion for Raising Awareness

This blog post was authored by Alyssa Dittner, BS, RRT, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee A diagnosis of chronic lung disease can leave people and their families feeling confused. Bambi Miller understands that feeling first-hand because her …

1 day ago

David Mannino, MD (Chief Medical Officer, COPD Foundation )

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question What are FVC PRE, FEV1 PRE...?

Some of the numbers are missing- but this looks like stage 4 (very severe) COPD. FEV1 is 24% of predicted ( and is lower than last year-- but one can get a great deal of day to day variability). The PRE indicates that all of the values were …

1 day ago

DebbieB.-Connecticut State Captain

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

๐Ÿ‹LEMON- GARLIC VINAIGRETTE๐Ÿง„Summer salad days are here! And it looks like they will be sticking around for quite some time! Here is a simple dressing you are sure to enjoy! 3/4 cup olive oil 5 tbsp. red wine vinegar 3 tbsp. lemon juice 1 1/2...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Tuesday! 
Today I choose to have a great day! I hope you do, as well! ๐Ÿ˜€

1 day ago

CherNY

CherNYasked the question: What are FVC PRE, FEV1 PRE...?

I know my numbers are not good but i am adding 2 PFT results, one from Feb 2023, the other from Jan 2024. A lot of info but i would like to know especially what the FVC, FEV1 and FEV1/FVC mean? I see "PRE" and "LLN" and "PRE Z". What do those mean?

1 day ago

Patrick M

Patrick Masked the question: Hereโ€™s my results from a routine cat scan โ€”- anyone have any advice ?

Just had a routine cat scan for lung cancer โ€”anyone have any advice ? Iโ€™m not very thrilled with the results โ€”- smoked from 86 thru 2002 ? Then cigars for a few years then off cigars then cigars constant since 2012 thru last Friday after I read this …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainGood afternoon on this extremely hot day!
Salads are a good choice for a light meal. Plus,  you'll have leftovers!
Today I made a Cold Couscous Salad! ๐Ÿฅ„

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota Good morning Monday!! Wishing everyone a good easy breathing week a head!! Stay cool and hydrated. 

2 days ago

DebbieB.-Connecticut State Captain

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

๐Ÿซ๐Ÿซ๐ŸซBLUEBERRY SMOOTHIE๐Ÿซ๐Ÿซ๐Ÿซ 1 1/2 cups almond milk1 banana, halved1 1/2 cups blueberries 3/4 cup vanilla Greek yogurt Place all ingredients in a blender. Blend until completely smooth. Pour into glasses. Enjoy!Serves 2 ๐Ÿซ๐Ÿซ๐Ÿซ...

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainIt's Motivational Monday, friends! 
We all have a mission in life. My mission in life is to live long and prosper. I do my best to take good care of myself and do the best I can with everything I do.
What is your mission?
Yes, you can do well everyday! You have the power to make your days great!
And, at the end of the day, mission accomplished!
Each day will be better than the one before it.
Keep on smiling! ๐Ÿ˜€

2 days ago

Marvin Nordgaarden

Marvin Nordgaarden

Had to do catheter over extended bladder well endured the pain need nebulizer treatment but we are making our own mix Brestz .Yupelri,Brovana-Artormetetal,pulmicort -Budesomide. One has to be refrigerated.

2 days ago

CherNY

CherNYanswered the question Can anyone on here tell us about your lung transplant?

I've gone through evaluation which includes myriad of testing on all other body functions: heart cath, sniff test, bone density, echocardiogram, blood tests, urine tests, CT scans for chest and abdomen, an esophageal swallow test, arterial blood testing …
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

2 days ago

CherNY

CherNY#3) Lastly, a person's quality of life must be considered. Before the poop hit the fan with this COPD I made a living in the martial arts for 25 years (4th degree black belt), owned a Harley Davidson Sportster, became a SCUBA divemaster, was a volunteer EMT, had gone bungee jumping and sky-diving (bucket list!), loved riding my ATV through the woods and would always jump in any volleyball game I saw. Adrenaline junkie, for sure. At 57 years old I have a lot more to do. Even though I participate in pulmonary "pre"hab 2x a week for months now, this is certainly not the quality of life that will keep me mentally and physically content. I would recommend joining 2ndwind.org for even more support, and their private FB page www.facebook.com/groups/478301529666201/ . My next appointment to meet my new team of doctors at center #2 is July 30th. I will post after that, and promise to make it shorter. ๐Ÿ˜‰ Any feedback from the pro's out there would be appreciated. 

Log into Facebook

Log into Facebook to start sharing and connecting with your friends, family, and people you know.

2 days ago

CherNY

CherNY

#2) My Zoloft dosage was maxed out (been on it for 20 years increasing gradually) and the Zanax .25 mg was not cutting it anymore. BTW - if I took .50 mg I would fall asleep. To me, that is not controlling anxiety! In January 2024 I was told the same things as in January 2023: not sick enough, maybe 12-18 months. That hospital was just not a good fit for me. In June of 2024 I started at another facility.  I thought getting on the transplant list was an objective process-it is not. The philosophy is different at center #2. At my initial visit (70 minutes of talking) I was told that it would seem I am ready to be added to the list. Wow! BTW - center #2 scores highest in the SRTR. I asked how they are able to provide transplant faster than center #1. I was told that they will accept donor lungs that other places may not accept because they found there are some issues that can be dealt with after transplant. They do have the highest SRTR rating for 1-year survival; 2 "bars" more than center #1. In addition, my 6-minute walk done 2 weeks prior had me go from 3L to 4L to 5L to 6L just to maintain adequate perfusion. That was a factor for them as well.  The pulmonologist I spoke with at center #2 said what most doctors say: if I wasn't wearing a cannula they would never think I was as sick as the tests show.  *adding #3 then I will be done

2 days ago

CherNY

CherNY

#1) It's been over a year since I've posted so this is overdue. Besides resolving the issue with neonics in my well-water there has been other changes, as well. In my post in March 2023 I stated that I was told by me transplant center that I wasn't ready to be listed as I was not "sick enough". When I asked what "sick enough" looks like I was told it would like hospitalizations, perhaps a ventilator and other scary stuff. I was never given information about what my test results and numbers would look like to be sick enough. In addition, in the same day, the surgeon said I would get a single lung transplant while the pulmonologist at the same hospital said it would be double. That was not a good sign for me but I kept with them over the summer of 2023 and was given Rx's for 6-minute walk and PFT at a location closer to my home. When my appointment with the center came up 3-months later I was told I would have to repeat the tests at their hospital. Another bad sign - why tell me I could go anywhere and then tell me they wouldn't accept those tests or the blood work and urine tests done elsewhere? While I heard good things from other people who had gone through the same hospital for transplant, they did not share my doctors, or "team". That was another disappointment. I could not get an appointment with the psychiatrist and no one responded as to why. I found out later he had taken an extended leave.  I needed to talk about my anxiety and depression that was building and quite honestly was handled best by edible THC. I know THC was a no-no due to it's affect on anti-rejection drugs even though my psychopharmacologist and palliative ( NOT hospice) care doctors offered to give me an Rx for medical THC.   * didn't know there was a character limit, so starting #2

3 days ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHey! Happy Sunday, everyone!
I hope you enjoy your day! Having a good day will lead the way to a great Monday! 
May your day be stress-free, full of joy, and very peaceful! โ˜บ

3 days ago

das23

das23

Drum roll!!!!!!!....After spiritual consultation with my advisor(edpe77) I believe we will reach 60,000 members on next Saturday---July 20!!!!!

3 days ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Questions on my PFT

@Roxiedog1963 As Karen and others have said, we can help with your COPD questions but we can not help with your anxiety, ADHD problems. We are not a help line for for mental health issues. If you google online anxiety groups you will find a number of …
DebbieB.-Connecticut State CaptainRoxiedog1963Caroline West Virginia State Captainand 2 others also answered the question DebbieB.-Connecticut State Captainand 4 others also answered the question

3 days ago

CherNY

CherNYanswered the question Could my well-water have nicotine in it?

UPDATE! Yes!! There are neonics in my well water. (Plus other yuks!). Imidacloprid is the most prevalent insecticide used in agriculture. That test came back negative, and i cannot afford the $300 per test to see exactly which neonic (synthetic nicotine …
Christina H RRTDavid Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question Christina H RRTand 1 other also answered the question

3 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question Virtual Meetings

Hi Aimee_M Welcome to 360Social. In addition to the group that Bill mentioned, there are other groups that meet monthly for specific interests. If you're on oxygen, or simply want to learn more about it, there's Oxytalk; if you want to learn the …
Bill Clark - Community Manager also answered the question Bill Clark - Community Manager also answered the question

4 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.