Bill Clark - Community Manager

Bill Clark - Community ManagerComing soon to a webinar near you! 


Here is a chance to learn a little about our Harmonicas for
Health Program a program designed for people with COPD as well as other chronic
illnesses. Join our own Stephanie Williams for an overview of the program, how
it works, and how it benefits your lung health, and even a beginning lesson.
Register to join us and bring your harmonica if you have one and play along
with us!

Donโ€™t have a harmonica? Harmonicas
for Health kits are available from the COPD Foundation and contain
everything you need to get started. 


Hope to see you there!



Harmonica Fun for Lung Health

Wednesday, July 8th at 2 p.m. CT


https://event.on24.com/wcc/r/2408802/4255DC8F87F8ED3AB43D10A1B70C5E23

1 week ago

KerrysWorld

KerrysWorldAs tragic as the pandemic itself has become is the fact that most MEANINGFUL research has come to a screeching halt unless its Covid19 related. 
https://www.statnews.com/2020/05/04/coronavirus-lab-shutdowns-impact-on-scientists-research-delays/
From the article:
===============================
The global health emergency has shut down scientific research labs across the country in a crisis that has left some scientists scrambling to save their work โ€” and has left others grieving the loss of experiments they had dedicated months or even years to carrying out. Many are grappling with an overwhelming sense of uncertainty about how theyโ€™ll continue their work.
===============================

5 hours ago

KerrysWorld

KerrysWorldhttps://www.sciencedirect.com/science/article/pii/S0753332218329391?via%3Dihub
2018-09
Conclusion: ATRA ameliorates ERK/JAK-STAT pathway in emphysema condition, resulting in alveolar epithelium regeneration (lung restoration). Hence, ATRA may prove to be a potential drug in the treatment of emphysema (ATRA : all-trans retinoic acid). 
Also Known As a metabolite of vitamin A1. Clinical trials previously tried this treatment on humans unsuccessfully but not in the same context (lower dose, less time span). It is currently used successfully in leukemia. Research needs to continue on humans regarding its use in emphysema.๐Ÿ˜’

5 hours ago

Orlan = State Captain - Indiana

Orlan = State Captain - Indiana

I haven't checked in for a while.  Was at Cleveland Clinic last month and had one of my best PFT's ever.  My biggest concerns now is kidney failure and prostate problems.  I go back in a Couple of weeks for a battery of heart tests, ( since I had a heart attack last February).  I am healthy and doing well.  I am doing cardio rehab, three times a week.  I also bowl twice a week. 

10 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Good Days - Bad Days

I never thought I would say this, my breathing has been mostly excellent, even when the weather hasn't been co-operating its the dew point that gets me. I have been on a low carb diet going into my third full month and its been unbelievable in my battle …

11 hours ago

Jane Martin

Jane Martinanswered the question Good Days - Bad Days

Hello all... Thank you for your great comments and tips on how to handle good days and bad days with COPD! Does anybody have any more words of wisdom, tips, do's and/or don'ts on this topic? We'd love to hear from you!

13 hours ago

deb1111

deb1111

Hi everyone.  I am a 54 year old female from Ontario,  Canada.  I quit smoking Dec 3rd, 2018 after almost 40 years of smoking, most of those years a pack a day.  Just a few months ago I started having SOB on exertion and chest pain.  All heart related tests were done and clear.  My SOB on exertion then turned into SOB doing nothing as well.  Definitely scary and due to the pandemic hard to get appointments and answers.  In a nutshell, I now have a respirologist who started me on Symbicort, 2 inhalations every 12 hrs.  It took about 1 week to feel the affects, then I had 2 weeks of feeling pretty good and very little SOB.  About 1 1/2 weeks ago I noticed that I was having more SOB "episodes" and that the doses were not cutting it anymore.  I had a phone appt with my respirologist today and he is going to start me on Spiriva now as well as upping my Symbicort doses to 2 inhalations 3 times a day.  I have a Pulmonary Function Test next week to find out what is happening.  He mentioned my CT scan shows minor emphysema and mentioned asthma as well.  Just looking for a diagnosis to ease my uncertainty.  So happy to have found this site and all of you.  I have been off work for 2 months now trying to figure all of this out,  so kind of scary as wearing a mask for work is not doable at the moment.  Are you able to wear a mask comfortably?  Does the hot weather affect you?  Both are making breathing more difficult.  

15 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ben AI had an (incompetent) GP tell me to up my Symbicort from two to three times a day.  It did NOT go well.  Shortly after upping the dosage, I found myself wide awake, shaking from head to toe, and searching the web for symptoms of Symbicort overdose at 4:00am.  I unilaterally decided to return to the normal dosage of Symbicort, added in a couple of extra puffs of Ventolin, and was fine almost immediately.11 hours ago
  • Jean IA State CaptainSince you're going to have a PFT and I hope, see the respirologist for an interpretation of the results,  besides medication issues, you might talk with him about beginning an exercise program.  As crazy as it sounds, an daily exercise routine may be able to do more for you than any meds would.  Most of us with COPD are very deconditioned, which is part of the reason we become breathless when we try to do things.  Daily exercise helps both the heart and the lungs to become more efficient and stronger.   Muscles work a lot better when they're well-conditioned and can do a whole lot more with less O2 than weak, flabby ones.


    A good treatment plan should include not only good meds that will help, but also information regarding exercise, diet, weight control, and an action plan for what to do when you do get something respiratory.  Masks are difficult for many of us, but the better shape you're in the easier it should be.  Heat and humidity, especially dew points above 60 make breathing difficult for everyone.  We tend to feel it more because we have less to work with to start.10 hours ago
  • edpe77
    Ben a glad you posted. I know there are warnings about taking too much Symbicort, did not know what could happen. Deb1111 take note. Also, you are no different now than you were a year ago. This disease just progresses very slowly.

    ed9 hours ago
edpe77

edpe77answered the question Interest in Support Group Call

I will try to join you all too. ed

15 hours ago

Soleena

Soleena answered the question How to encourage productive coughing to clear mucus

one other thought, she could ask her doc about adding nebulized normal saline or hypertonic saline that she could inhale to help loosen any mucus and make it easier to cough

16 hours ago

Soleena

Soleena answered the question How to encourage productive coughing to clear mucus

howdy, maybe start by talking to her and see what her perception is of her breathing, smoking and mucus is? If sheโ€™s not bothered, id just let it go, the motivation for change has to come from her even though I know youโ€™d move mountains for her. That …

16 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question Interest in Support Group Call

Hi Dee Annacone - Here is the registration info: Please register for COPDF/360social Support Group Call on Jul 10, 2020 5:30 PM EDT at: https://attendee.gotowebinar.com/register/44465287... After registering, you will receive a confirmation email …

16 hours ago

Soleena

Soleena answered the question Is it really necessary to have a machine if you have been diagnosed with mild sleep apnea?

Hi Cailey, I have a diagnosis of sleep apnea and use bipap at night, started with cpap. Iโ€™d say definitely try to treat it if your doc recommends it. Untreated sleep apnea puts you at risk for all sorts of complications down the road like high blood …

16 hours ago

Dee Annacone

Dee Annaconeanswered the question Interest in Support Group Call

I hope it's not too late. I would be very interested. I would be open to either web, or telephone, or both. I'm new here as we just moved here at the end of March. I was at Better Breathers, and had friends and counsel. It's hard to do it here with …

17 hours ago

Suzanne adams

Suzanne adams

Great  a  better  day  csuse  its  not  so  humid snd  muggy  out  eadier  to  breath  but one question  IM starting on a new puffer  its   instiolto  restinat .  Woundering would it BE harmful to me if.i took  this as  well   as  atroventHFA

17 hours ago

  • NewestOldest
  • clipper (Debbie) - NJ State Captain I believe it would be harmful but you should call your pulmonolgist for be sure. I certainly wouldnโ€™t do it until I spoke to the pulmonolgist or someone in their office.


    Inspiolto contains two types of meds referred to as LABA and LAMA. Atrovent contains a LAMA so you would be double dosing on that particular type of medication. 16 hours ago
  • CarolineI am with clipper.  You definitely need to contact your pulmonologist.11 hours ago
  • Jean IA State CaptainStiolto contains both a LABA and a LAMA.  Atrovent is the short version of a LAMA.  Both are mustarinic agents (LAMA being a Long Acting; Atrovent is a SAMA, or a short acting one).  Technically, if you take both, it could be said that your are double dosing.   That said, there are docs who regularly prescribe the SAMA almost as a rescue inhaler.  I use Combivent mostly as a rescue inhaler, and when I've tried Spiriva (one of the most common LAMAs) no one's ever suggested that I stop taking it.  Since I don't take Spiriva or any of the LAMAs, it's not a problem for me, and I do know that some docs prescribe both.  I think it's worth asking the question.  If the doc was paying attention to what else you're taking, and thinks it's fine, I'd go with that unless you find that things don't seem to work as well.10 hours ago
Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question Interest in Support Group Call

We would love for you to join us this Friday! This is a great chance for us to get to visit with each other. Hope to see you there!

20 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Is it really necessary to have a machine if you have been diagnosed with mild sleep apnea?

There is also an oral appliance that MAY help folks with mild sleep apnea (we bought it for my dadโ€”expensive and it wasnโ€™t covered by insurance). It may or may NOT work abx you have to find the right dentist who is specially trained to make you the …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Good Morning or Happy 6th of July, hope everyone has some good things to smile about today! Love you guys Bill66

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Is it really necessary to have a machine if you have been diagnosed with mild sleep apnea?

I have been in pharmacy for 32 years, before I would invest a great deal of money in a costly machine, I would do a self assessment, Am I gaining weight... Am I drinking more alcohol... etc... CPAP is a very lucrative business. I would certainly research …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Is it really necessary to have a machine if you have been diagnosed with mild sleep apnea?

The other Jean gave you a really good answer, and I would just echo her. If you were prescribed a C-pap, it's because you need the positive airway pressure to help you breathe normally while asleep. Sleep apnea is a condition that can be very dangerous …

1 day ago

JeanO53

JeanO53answered the question Is it really necessary to have a machine if you have been diagnosed with mild sleep apnea?

Hi Cailey, when diagnosed with sleep apnea it means that there is some type of interruption in your breathing when youโ€™re sleeping. An interruption in breathing effects the amount of oxygen the body is getting. The CPAP machine helps to break the …

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Should I be getting regular scans

My pulmo keeps fighting me on gettting scan finally a few weeks ago we did one all she said was I had bronchitis. Nothing about the blebs or nodule. Be some questions next appt in August.

1 day ago

BlairT

BlairTanswered the question How to encourage productive coughing to clear mucus

Definitely encourage her to do some proactive coughing if she can feel the mucus in her airways, hear wheezing or gurgling sounds or similar. As das23 notes there are lots of details on ways to do that on this site. For myself, the best ways to stay …

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota

That was a wonderful tribute  with the harmonicas!!  Very nice!!

1 day ago

Cailey

Caileyasked the question: Is it really necessary to have a machine if you have been diagnosed with mild sleep apnea?

I have been diagnosed with mild sleep apnea and copd. I tried that cpap machine and cannot handle it.

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

I had my abdominal MR Thursday and on Friday my pulmonolgist called with those results, I have a single lesion on my liver. I have a telehealth appointment with an oncologist next week. And this is all happening during COVID so itโ€™s all happening over the phone. From what I understand the next step is biopsy and pet scan to figure out exactly what it is. More waiting. 

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Good Morning, hope everyone had a good 4th

1 day ago

muddleaged

muddleagedanswered the question COPD and Air Travelโ€”What Should Be Considered?

This article in the Washington Post interviews Fauci and 5 others about how they keep themselves safe during the COVID time: https://www.washingtonpost.com/health/how-fauci-5-other-health-specialists-deal-with-covid-19-risks-in-their-everyday …

2 days ago

Df2400

Df2400answered the question Should I be getting regular scans

Thank you so much for the advice guys. This is all new to me. This direction will get me the answers I need. I am concerned because from what I know of emphysema itโ€™s a scary illness to have. I hope the CT scan hasnโ€™t diagnosed correctly. I wasnโ€™t even …

2 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Should I be getting regular scans

I would suggest that you find a good pulmonologist and have a spirometry test or a Pulmonary Function Test. CT scans showing evidence of emphysema,m especially mild emphysema aren't good for diagnosing COPD; they are generally used to confirm a …

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Should I be getting regular scans

Probably more helpful than a CT Scan would be a pulmonary function test or at least Spriometry. Because of your age, a simple blood test to check for Alpha-1 antitrypsin deficiency, a genetic condition that can cause emphysema. FYI: In the states, …

2 days ago


COPD360social posts are monitored by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as staff Respiratory Therapists.


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.