COPD360social welcomes new member Tuck who joins 65,272 current members of our community. Weโ€™re glad you're here!

Kim H

Kim H

Forgive all my grammar and wording errors.

46 minutes ago

Kim H

Kim H

Continued again. I hope Iโ€™m not breaking the rules.  I have an appointment to see if I prequalify for a lung transplant. I need to wear a BiPAP at night. That seems to take care of the problem. I havenโ€™t had an asthma attack in quite sometime. Iโ€™m hoping since the BiPAP is taking care of my issues. I wonโ€™t have further damage. I donโ€™t know how that works when I donโ€™t have all the other symptoms. Does anyone know. I know everyone is different with different circumstances. I used to be a restaurant manager when people could still smoke in restaurants. I was a manager for 15 years until my unfortunate auto accident that ended my management career. That began a downward spiral of bad things happening. I forgot to mention I have cement pulmonary embolism s in both lungs due to a back surgery where he injected to much medical grade cement in the two breaks of my vertebrae. I donโ€™t have osteoporosis, which usually goes along with those kind of brakes. I just was lifting a really heavy box which I couldโ€™ve done easily 10 to 15 years beforehand. Any advice, suggestions, experiences, etc. that any of you have I would greatly appreciate. Iโ€™m trying to get positive and change my secondary habits in my eating habits because if I donโ€™t, I will die I mean, we all die but a premature death. I just keep thinking I didnโ€™t even smoke. Thank you for allowing me such a l o n g vent. Iโ€™m glad to be here.๐Ÿ˜Š

49 minutes ago

GroovyLit

GroovyLit

Hi everybody, and Happy Monday! This is for anybody with information on pulmonary health specialists in Seattle, WA.


My husband and I are moving from Austin, TX to Seattle, WA. I will go up on June 1 to find a place for us to live (and to begin to live in a place with a far healthier climate/air quality as soon as possible). I want to proactively reach out to a pulmonologist, immunologist, and asthma doctor this week to begin continuity of care when I arrive. My own doctors are unavailable until next month -- asthma/immunology is on maternity leave and pulmonologist is fully booked until my next scheduled appointment.


Anyone who could make recommendations on the best place to start? I understand UW Washington Medical's system is a global leader in pulmonary health, but looking at their website I'm not seeing an immediate way to reach out and speak to someone about this.


Thanks!

56 minutes ago

Kim H

Kim H

Continued. Iโ€™m sorry for the long post. I was taken two more times by ambulance for the same symptoms. I was also told approximately 6 months before that after another sleep study even when I could tolerate my CPAP mask that my oxygen level was going too low. So I needed supplemental oxygen while sleeping. Again what else?! On my hospital stay approximately two months ago my pulmonologist since 2015 partner told me I had end stage lung disease. I am still in shock. My own pulmonologist did not have the guts to tell me??? Nor did he tell me severe asthma attacks can cause permanent damage to the lungs. I found in the last couple of days a 10 year old medical record from my former PCP whom I first saw for my asthma. It said maybe at risk for COPD. WHAT???? Why didnโ€™t he tell me???? I had 5 back surgeries again since 2015. Surgery 4 and 5 were from slipping and falling from a piece of half frozen onion on the floor of a Walmart store. I had on flat shoes and I wasnโ€™t looking at my phone. The day before my fall that broke my back and required 2 back surgeries within a year. I was working at a busy deli. I always liked active positions. After the fifth back surgery I became very sedentary and my poor eating habits got worse. The only good thing that came out of it was after the second surgery from my Walmart fall. Is I lost my appetite and lost 40 pounds which I needed to do. I did get a settlement but it was not nearly as much money as it should have been. I havenโ€™t be able to work since the last fall at Walmart. I live alone. I am so anger and sad about all of this. It could have been avoided. I donโ€™t wheeze, cough, have any mucus problems. Iโ€™m very independent and I want to stay that way as long as possible. I asked for palliative care while hospitalized. Another thing my own pulmonologist at the time did not offer me one bit of hope. The attending physician while I was hospitalized asked me if I thought about a lung transplant when the time came. i need a therapist!!

1 hour ago

GroovyLit

GroovyLit

Kim -- you also mentioned that you have not been wearing your CPAP mask. The headaches you describe can be caused by hypoxia (lack of oxygen) while you sleep -- in fact, low oxygen could be waking you up to tell you to take a good breath. I had severe sleep Apnea for years before I was willing to have a sleep study. I also have claustrophobia (which makes it next to impossible for me to spend the night in the hospital, unfortunately). If the mask you have tried isn't working for you, demand help to find one that does. There are a lot of different kinds out there to try, many far less expensive than others. I think I went through about every type there is before I settled on one that works for me. I promise -- CPAP (or BiPap, in my case) 'compliance' can be life changing.

1 hour ago

Kim H

Kim H

Hello I am a newly diagnosed COPD suffer. I have never smoked. I had very mild asthma when I was 11-12 years old. I did not even need to carry a rescue inhaler for more than 40 years. A year after menopause I had the worst asthma attack Iโ€™ve ever had. I continued to have severe asthma attacks. Nothing changed in my environment. I have been rush to resuscitation approximately 10 times.  I had been seeing a very well respected, personal pulmonologist. In the last year or so when I would lay down I could not breathe. Geez now what??? So the drudgery of testing ensued. I did a sleep study. I have sleep apnea. More tests. I have a paralyzed diaphragm. More tests to see if I had a hole in my heart (PFO). Negative. I continued to have asthma attacks. The last time I was in resuscitation it took them three hours to get my lungs to open. I have the kind of asthma where my lungs just close. I donโ€™t wheeze or anything like that. They just donโ€™t move air. I was almost intubated. Whew! Dodged that bullet!!! Another thing started to happen. I would start to have what at the time for lack of a better term โ€˜spellsโ€™. I could not get out of bed except to use the bathroom which is just feet from my bed. I had to ask my son to come over and feed the cat it was so bad. After a few days I would snap out of it. No shortness of breathe or anything else. Just weakness and sleeping all the time. My PCP had retired and it took me a while to find a new one. I told my new PCP about my โ€˜spellsโ€™. He told me to call him the minute it happened,  call him. Well the nest time it happened my head hurt so much when I woke up and I was so weak I called 911. I forgot to add due to a very serious auto accident I was in I had become very claustrophobic. I could not tolerate the CPAP mask. Plus all the severe asthma attacks had only reinforced my claustrophobia. So I was told the CO2 level in my blood was almost off their chart it was so high. 

1 hour ago

  • NewestOldest
  • GroovyLitI can't speak to your specific diagnosis, but I can tell you that I have both asthma and COPD. While asthma medications do help tremendously, my asthma has rarely been well controlled. This has been frustrating for my doctors and for me, but last year I was finally diagnosed with non-type 2 asthma. I have almost not allergic sensitivity to anything, and my eosinophil counts (a type of white blood cell typically high in people with asthma) was zero. Looking back, it had been for at least the ten years since my PCP has records I can look at online. 


    In people with this type of asthma, the body can "hyper" react to almost anything, but I am especially sensitive to scents, strong cooking odors, high pollen counts (especially of mold), and unstable barometric pressure. 


    My symptoms and the frequency of my asthma flare-ups definitely increased around the time I hit menopause. I had though these were COPD exacerbations, but in fact those COPD exacerbations have been caused (in part) by my asthma. In fact, I am moving to a part of the country with dramatically improved air quality overall on June 1 -- and extremely difficult and life-changing moving for me. Hopefully for the better.


    Understanding the type of asthma you have, allergies you may have, and how it impacts COPD (if you have COPD) is really crucial to avoiding the kinds of crisis you keep experiencing. Things like household dust, pets, gas appliances, and both the weather and the pollen counts outside my house (as well as pollutants like environmental smoke and industrial pollutants) are likely to have a huge impact on you no matter what kind of asthma you have, or you COPD status.


    If you aren't getting answers from your asthma doctor, I recommend trying to find a different one, and also asking for a referral to a pulmonologist.


    I hope this helps.1 hour ago
  • DebbieB.-Connecticut State CaptainSpeaking of severe asthma, I have uncontrolled eosinophilic asthma, I have COPD, and I have severe scent intolerance. I have learned to do my best to steer clear of triggers. I avoid some things, wear a filtered RZ mask to help in some situations, I keep hydrated, and I ALWAYS have my rescue inhaler and cell phone with me.
    Today is a bad asthma day for me because the pollen is awful here. 
    Not everyone with asthma will have the same triggers.
    Perfume and powder are the worst triggers for me. 
    It is important to have a good relationship with your doctor. If you do not, you can seek out a new one.
    Wishing everyone an easy breathing day!!! ๐Ÿ˜ท48 minutes ago
DebbieB.-Connecticut State Captain

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

๐ŸŠ๐ŸŠ๐ŸŠORANGE SMOOTHIE๐ŸŠ๐ŸŠ๐ŸŠ 1 large navel orange, peeled and seededHalf of a medium banana 1 cup frozen frozen mango pieces 1/2 cup almond milk 1/4 tsp. vanilla extract Place all ingredients in a blender. Blend until smooth. Enjoy...

5 hours ago

Bare

Bareanswered the question What can I do now, to help future me?

pulmonary rehab & walking to strengthen the lungs
David Mannino, MD (Chief Medical Officer, COPD Foundation )DebbieB.-Connecticut State CaptainKaren Deitemeyer - Florida State Captainand 1 other also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 3 others also answered the question

5 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Monday, friends! Did you ever have that feeling of just "orange" ?! Well, this is because you visit 360Social quite often! ๐Ÿ˜€
Orange is a beautiful color. Orange is the color of COPD Awareness. Please tell your family, friends, and co-workers about our website. We would very much like it if they would stop by sometime soon! 
Enjoy a pleasant, easy breathing day! ๐Ÿงก

9 hours ago

Oxygen tank Man

Oxygen tank Man

10 hours ago

Oxygen tank Man

Oxygen tank Man Hi every one hope every doing fine. Out on the trails on the stunning views of the North Yorkshire moors.
10k trail views lovely sunny day for it

10 hours ago

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

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question Posted on here 3 months ago, update with new improved spirometry, still have symptoms.

Your lung function is pretty good. Dupilumab ( and other biologics) tend to be reserved for people who are still highly symptomatic or impaired. You could always ask- but insurers who pay for this usually have pretty stringent criteria.
HIcopd - Hawaii State CaptainKaren Deitemeyer - Florida State CaptainCaroline West Virginia State Captain also answered the question HIcopd - Hawaii State Captainand 2 others also answered the question

18 hours ago

Dinna25

Dinna25answered the question Not a question just a Hello

Hi Wildebeest Pleased to hear your now getting the help, I was given Trimbow from day one have never had to ask for a change, hope it works as well for you. And you get those exercises bk on track.
WildebeestCaroline West Virginia State Captaindas23and 2 others also answered the question Wildebeestand 4 others also answered the question

19 hours ago

BlueSky

BlueSkyasked the question: What can I do now, to help future me?

Newly diagnosed Stage One but symptomatic. I know everybody is different, but I have no idea what to prepare for health wise and how my abilities might change, or not. Is there any stand out thing(s) that others are pleased they accounted for earlier, …

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captain

Happy Mother's Day! (click on the link to see the card)
https://bmacards.com/3n18xp

1 day ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captain

Happy Mothers Day, Mothers! ๐Ÿ’โค

1 day ago

BlueSky

BlueSky

Hello All. I am just navigating my first few weeks with a COPD diagnosis. Stage One spirometry. Emphysema and scarring on CT. Lung nodule under observation.  My breathlessness has been considered 'mild asthma' for my whole adult life and a dust allergy as a child. As a non smoker I didn't even consider COPD ever being 'a thing'. Its a bit of a lonely one. I work in a pharmacy health care setting so very difficult to avoid respiratory infection which apparently is my main way of slowing progression, along with exercise and my new Anoro inhaler.  Anyway, thanks for reading, Im hoping to feel less adrift with this diagnosis. 

1 day ago

Danforth55

Danforth55

I had by twice a year visit with my pulmonologist this week. We di a lung ct scan and breathing test in the fall and a breathing test in the spring. Three years ago a scan indicated mild centrolobular emphysema though we couldnt see anything on the scan. My recent breathing test put my fev1/ fvc % at 64. It was 67% three years ago. I am 67. He said it should be higher than 70% at my age. So I have a diagnosis of stage 1 mild copd according to gold standard, and interstitial lung disease since the scan does shiw some scarring. But no medication. I feel normal, have no symptoms. I do another scan in November. 

1 day ago

das23

das23

Happy Mother's Day to all the 360 Moms

1 day ago

Lucy k

Lucy k

Oh wow I am so happy I have found you all.  I feel less alone. I live in Wellington New Zealand.  I have severe COPD  but try to stay positive. 

1 day ago

mebeal321

mebeal321asked the question: Posted on here 3 months ago, update with new improved spirometry, still have symptoms.

Hi all, posted on here 3 months ago with my pfts, both of them from last year, one in June 2025, one from November 2025. My new pft (April 2026) is looking much better, though i still remain symptomatic. I am being treated by an allergist, taking …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Saturday, friends! Hope your day is filled with reasons to smile! ๐Ÿ˜€

2 days ago

NgR

NgRanswered the question Tiova vs. Spiriva Inhalerโ€™s

Tiova is in powder form and require a strong pull to draw the powder from the inhaler to reach the lungs, which is not possible by a copd patient. So all of the 9mcg will not be possible to inhale. Even a normal person cannot inhale 9mcg, this is due …
AnonymousBill Clark - Community Manager also answered the question Anonymousand 1 other also answered the question

2 days ago

perkyH

perkyH

i have the valvaes also

2 days ago

perkyH

perkyH

it has made the biggest difference.....I'm now not short of breath.

2 days ago

lazy t

lazy tanswered the question Long time copd patient with cronic hiccups! How to fix it.

Thank you so much for the advice! My pulmonologist prescribed medication, and my annoying hiccups are gone! I no longer need safety glasses to put on my hearing aid! lol (just try putting on your hearing aid in the middle of a hiccup event!) Good things …
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

3 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐ŸŒท Happy Motherโ€™s Day to all the moms, bonus moms, caregivers, daughters, grandmas, neighbors, and those amazing people who somehow always know where the tissues, snacks, medications, chargers, and โ€œmissingโ€ reading glasses are. ๐Ÿ˜„

In the COPD community, โ€œmotheringโ€ often looks a little different. Sometimes itโ€™s helping someone with oxygen tubing that decided to tie itself into a sailorโ€™s knot. Sometimes itโ€™s reminding a loved one to slow down and rest. Sometimes itโ€™s sitting quietly beside someone during a hard breathing day and simply being there.

Today we celebrate the people who show up with love, patience, humor, strength, and the occasional โ€œDid you remember your inhaler?โ€ from across the house. ๐Ÿ’™

And for those missing their moms today, or carrying a mix of emotions, weโ€™re holding space for you too.

Thank you to every person who steps into that caring role and helps make life feel a little lighter, safer, and more hopeful.

๐ŸŒผ Happy Motherโ€™s Day from all of us at COPD360social
โ€” and may your weekend include good company, warm memories, plenty of laughter, and oxygen tubing that behaves itself for at least one full day. ๐Ÿ˜„

3 days ago

DebbieB.-Connecticut State Captain

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

โžก๏ธEASY COLD SESAME NOODLESโฌ…๏ธ12 ounces whole grain spaghetti 1/2 cup creamy peanut butter 2 tbsp. lower sodium soy sauce1 tbsp. seasoned rice vinegar 1 tbsp. toasted sesame oil 1/2 tsp. garlic powder 1/2 tsp. ground ginger 2 tbsp. warm water, plus...

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday, friends! Today, we have one of my bestest outdoor buddies-Chippy! ๐Ÿฟ  This little guy loves nothing more than collecting peanuts and filling his pouches! ๐Ÿฅœ 
We wish you a pleasant, easy breathing day! ๐Ÿ˜Š

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.