Kandy State Captain of South Dakota

Kandy State Captain of South Dakota

Had a follow up with my PCP here after hospital stay in ND and I wished I never would went I was so down when I left there. He has no clue to anything about copd.  I feel sorry for any copd patients he has.  He should be reported.  He even is a internal dr.   No faith in him at all anymore. 

48 minutes ago

RobinAllenSmith

RobinAllenSmith

Judt hanging out at home getting informstion about COPD which i found out i have

1 hour ago

MissyH

MissyH

I have a friend who is very ill in the hospital. She has c-diff from an antibiotic, pneumonia and then will have a pacemaker put in after they clear those things up, so she will be there awhile :(  Poor thing has been so very sick.
She said I could visit but all visitors must wear masks and gowns.
I am concerned that it might be too risky for a COPD patient to go visit under those circumstances. What do you all think?

3 hours ago

MissyH

MissyHFYI, I have an app on my phone where you can check pulse and oxygen just like on your oximeter. I sometime use them both and they are with 1 point of each other, so the app seems quite accurate and free. Here it is:
https://play.google.com/store/apps/details?id=comm.cchong.HealthMonitorLite

3 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question When can you accept the pulse/ox reading?

I have seen instructions explicitly say not to use the thumb. And if you are moving around and using your hands (pushing a cart) the numbers will jump around. Stop, stand still, hold your hand steady and give it a few seconds to dial in. Itโ€™s nothing but …

3 hours ago

Tony

Tonyanswered the question When can you accept the pulse/ox reading?

After decades of using an oximeter, trust it. Give it some time to settle down, but trust it. I have never heard of checking blood saturation using one's thumb. Over 25 years of having my saturation checked by professionals, never did any check my thumb …

3 hours ago

PDeNardo

PDeNardoI have been really into the nutrition aspect with COPD and found this information on carbs, Since they can play a significant of our diet and impact on those of us with COPD I thought I would share'

https://www.webmd.com/diet/ss/slideshow-carbohydrates-overview?ecd=wnl_spr_092018_REMAIL_LeadModule&ctr=wnl-spr-092018-REMAIL-LeadModule&mb=umfDJqpgjNU%2f%40W3Zr6GQ3ng0WleHxvIqXnYaXqMaGj4%3d

4 hours ago

PDeNardo

PDeNardoanswered the question Suffering from anxiety over possible emphysema diagnosis.

Bill is correct and anxiety is certainly not rare for people with COPD. Information will help with the anxiety because you will know what to do. Education is power over whatever doubts you have. See a pulmonologist to get the correct diagnosis. And of …

4 hours ago

Suever

Suevercommented onWith COPD Is There a Limited Number of Hours it is Healthy to Fly?

 People with COPD should always check with the specific airline. Some airlines provide the oxygen and some require you to bring your own approved concentrator. Oxygen tanks and liquid oxygen are not allowed. Thanks for all the good tips...

5 hours ago

Tommy2lungs

Tommy2lungs

Doing good today so far . I have rehab yahooooo I like it 

6 hours ago

Cheryl klein

Cheryl klein

 I have never felt worse. Stage 4 copd  D on gold. 62 , just received SS . now life is pretty much changed for the worse. worked hard all these years.

6 hours ago

  • NewestOldest
  • PDeNardoI am so sorry you are feeling so bad.  But know that there are people on here who have been at stage 4 for a very long time.  I am sure it is not easy but please don't give up. Exercise at your level as much as you can.  Watch your diet and take your meds.  It can be like work but it is worth it.  If you start to feel depressed talk to your doctor.  But mostly remember that we are here for support.5 hours ago
  • clipper (Debbie) - NJ State Captain I seem to recall you had pneumonia not all that long ago. With COPD it can take a long time to recover. 


    Have you spoken to your pulmonologist about pulmonary rehab? Personally, I would make that my priority. 


    That grade D means you are having lots of exacerbations. Does your pulmonologist have you on Dalirsep or maintenance dosage of azithromycin? Both those therapies have been shown to help. 


    I am sorry to hear you are having such a hard time. 5 hours ago
  • Kandy State Captain of South Dakota Cheryl got to get tough and fight this battle.   Attitude goes along way.  Learn all you can about the lung disease there is life and a lot years with this  I am stage 4 with several lung diseases. Been on o2 since 97.  You can do it!! 38 minutes ago
Ken Benson

Ken Benson

One of my truths:  - The Bay City Rollers got their name by throwing a dart at a map of the United States, which landed near Bay City, Michigan. They made their US debut on this day in 1975.

6 hours ago

Elize82

Elize82

Hi Iโ€™ve just joined. My husband today was diagnosed with COPD moderate. His reading with 59%. Iโ€™m not familiar with COPD. Itโ€™s quite a shock and google searches are saying about life expectancy. Is 59% moderate to severe and how do I find out heโ€™s life expectancy. Heโ€™s 45 a smoker, well now quitting, very unfit. A little over weight. Sorry to be so upsetting and negative. Is there anyone that can tell me about this life expectancy that google keeps mentioning. I have young children so itโ€™s quite scary 

8 hours ago

Ashok PLB

Ashok PLBHello friends, A very good morning to you all. I managed to walk over to my barber today, for a long overdue haircut. Did the spirometry exercises before going, and also after coming back. It's explained https://www.beaconhospital.ie/sites/default/files/files/PILS/general_surgery/Incentive_Spirometry.pdf
I am not very happy about the inhalers that we need to use so much. I have been using the so called metered dose inhalers for the past fifteen years now. I find that they work very well for the first week, but then their effectiveness tends to go down, leading to SOB before the next dose is due. So I have changed over to rotacaps for both of my maintenance inhalers. The emergency inhalers (Asthalin and Duolin) have to be used as such, but I use them to their 50% capacity only, because after that, the medication delivery is so less, that it doesn't work. But the rotacaps can only be used when you are very calm and not breathless at all. Anyway I am happy with the rotacaps. No more up and down swings in my health.

15 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Heres something people dont realize, I walk 5 miles a day? 15 minutes of walking is approx 1 mile, 2000 steps is one mile, the basic human walks about 4,500 to 5,500 steps a day thats 2+ miles. I have an app that tracks my steps and within the app there is a healthy step counter and it starts counting after I do 10 minutes of consecutive walking. I have a neighbor Gary 74 who walks sort of sideways and can barely breathe due to heart issues he walks 2+ miles everyday. So if you walk 3 - 10 minute sessions a day thats 2 miles and so on. No Excuses. My wife does not have COPD and she parks as close to the front doors of Target as she can and shes out of breath before me. 

18 hours ago

edpe77

edpe77asked the question: When can you accept the pulse/ox reading?

This afternoon, in a plseant 72F/65%, enjoying a cup of coffee with a friend. Feeling slightly SOB, I checked my O2, on my thumb as I usually do. 84%! I turned on the O2, and watched it bounce around 84%-87%. I then increased the O2 to #3, still below …

18 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

I thought at one time we could edit our main posts? Or the feature should be available to remove our own or edit it! Just a suggestion.

18 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

I was just about to do one of my walks, bent down to tie my sneakers and lost my breath, Sometimes I forget I have COPD, but there always is a friendly little reminder right around the corner!๐Ÿ™โ€โ™‚๏ธ 

19 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Are there any recognized treatments for patients with both COPD and Sarcoidosis

Some of the treatments are similar. There is no known cure but according to the Mayo half the cases go away on their own. There are other treatment options that can be used along with your COPD medications.

20 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Suffering from anxiety over possible emphysema diagnosis.

If anything you are in the early stages which is good! You have a far better prognosis that a lot of us here! Don't panic....educate yourself. Learn about best diets for COPD, learn how to spot an exacerbation (times when you have a flare-up), get your …

20 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Celcept and prednisone

I know how hard it is to admit a decline, but it is very possible that there are other products and therapies that can help ease the decline. You really need to bite the bullet and tell your doctor everything!

20 hours ago

6Thor6

6Thor6answered the question Liquid Oxygen Therapy advice

Thank you for clearing that up. I have an update coming next Tuesday with a Respirology therapist, to see how I am doing and will mention that to her & see what she thinks of it. My apologies for just asking the same question a few minutes ago. :)

20 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Any one in the Symbicort/Trelogy Clinical trial?

I'm not is a study but I use Trelegy. Works better for me than any other medication I have tried.

20 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Liquid O2 vs Exchanger

Some people are just able to process the liquid better that compressed; probably because it is moister than compressed. For a high flow patient like yourself it is really a better solution because you can carry a larger volume of oxygen with less weight …

21 hours ago

6Thor6

6Thor6asked the question: Liquid O2 vs Exchanger

Hi everyone. Does anyone know why I would feel I am getting more O2 when I am using my portable liquid than when I am at home on my Exchanger? I am at a level 6L, but feel better when on the liquid. I do know that the hose is larger on the liquid O2 one …

21 hours ago

Sweetsay

Sweetsay

Not well today my head is numb and I am very dizzy and my left earlobe is hurting and I am trying to catch my breath but I canโ€™t itโ€™s been 11months since I quit smoking and I am sweating like crazy and I went to the hospital today but they sent me home 

22 hours ago

Lmacalister

Lmacalister

Good day everyone.  I was diagnosed a few months ago with COPD and since then I have done so much searching for information and the other day I came across this site and am so thankful.  I have learned so much from all the questions, I now have a list of questions to ask the doctor.

One thing I have to admit is I am still trying to quit smoking.  I've smoked for almost 47 years and I am making slow progress. I know with that diagnosis I should not have had a problem with just stopping. My children tell me not to beat myself up because I'm making progress. 

To everyone, I want to say hello and I'm glad I'm not alone with questions.

22 hours ago

BabyB54

BabyB54answered the question Kind of confused on saturation levels

Thank you all so much for the great info. So excited to have found this site...makes me feel really blessed. I see my pulmonary doctor in mid oct. And am going to do the 6 min. Walk test then.

23 hours ago

Gina Bradshaw-Arkansas State Captain

Gina Bradshaw-Arkansas State Captain answered the question What are your COPDCOPE'ing tips?

Iโ€™m a lil OCD and I have my meds set a certain way. I take my meds as soon as I get back from dropping my son off at school. I use Trelegy, not the best tasting inhaler. I use hot water to gargle after I take it. Sometimes it makes me gag, I have an easy …

23 hours ago

Whylene McCray

Whylene McCrayanswered the question Nursing pt rehab centers vs at home nursing palliative/ hospice care?

Talk it over with your mom.Its her trust in you,that you want..Help her to feel comfortable.Make no decisions without consulting her..

1 day ago

Tommy2lungs

Tommy2lungs

Started pulm rehab last week ..woow I learned alot and feel a little better 

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Kind of confused on saturation levels

Definitely agree with Clip to talk to your pulmo regarding what happens to your sat levels when you exercise. A six minute walk can help determine whether you need O2 for exercise, especially if you walk hard and don't just stroll. You might also suggest …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Kind of confused on saturation levels

I do think you should talk to your pulmonologist to see about using supplemental O2 while exercising (walking). Our O2 should not drop below 89%. It's great that it comes back up quickly but it would be even better if never hit 86%. Maybe pursed lip …

1 day ago

Tommy2lungs

Tommy2lungs

Hello Im new to this site. I have had copd for about 5 years now 

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRTI am beginning preparations for a huge health event this Saturday. 
Saint Thomas Hospital holds free medical days once a quarter for people in different parts of the state who have limited access to healthcare. People come from miles around to see doctors, dentists, and pharmacists to get treatment for problems they are otherwise unable to.
There will probably be somewhere in the neighborhood of 800 people who will be helped on Saturday, and I will likely screen about 250 of them for COPD. But our work doesnโ€™t stop there- we try to get as many of them to call the info line, and sign up for the PPRN as possible.
Educate and empower. Thatโ€™s what we love to do!

1 day ago

BabyB54

BabyB54asked the question: Kind of confused on saturation levels

walking, my 02 starts out at 95 then goes up and down like the small inclines I am walking. It will go down to 89, then back up to low 90's. Had it go as low as 86 and then came right back up to 91. I am on 02 at night. I walk a little over 2 miles if …

1 day ago

BabyB54

BabyB54

I have many mixed feelings and emotions right now.  I so appreciate all of your posts.  Finally quit smoking a little over a month ago.  Copd and oxygen at night for two years, originally diagnosed 10 years ago...seems like a lifetime.  Tried quitting several times.  Pray this is the last of it.  So depressing and shameful for me.

1 day ago

Ashok PLB

Ashok PLB

Hello, Good morning everybody! Today I stepped out into the street and gradually walked about 100 feet up to the corner. Wow, Bill66 says he walks 5 miles every day. Gee, how does he do it? He does say he started with half a mile, still. I have today managed 100 ft after 5 months in bed. ๐Ÿ˜ƒ Attaboy for me! Dan Martin has said in his blog post that improving aerobic fitness slows down the progression of acute hyperinflation during exercise. So I have now been motivated to do some.

1 day ago

muddleaged

muddleagedanswered the question What are your COPDCOPE'ing tips?

I keep a Sharpie permanent marker in my medicine chest. When I open anything, (even toothpaste), I put the date it was opened. If there is a counter, I put the date and EA if it is an even number in the morning (AM), and EE if it's an even number in the …

1 day ago

Mobal

Mobalanswered the question Here is the latest list of Hospitals offering the endobronchial valve

Thanks Dan. If my next CT scan is good I am likely going to UAB in Nov. to start transplant dialog. At least that is what my doctor told me in April. This will I hope be another option.

1 day ago

DanK

DanK asked the question: Here is the latest list of Hospitals offering the endobronchial valve

Alabama Dr. Mark Dransfield, Dr. Surya Bhatt, Dr. Joseph Thachuthara-George, Dr. Mike Wells, UAB Medical Ctr Pulmonary Clinic at The Kirklin Clinic of UAB Hospital 526 20th Street South, Birmingham, AL 35294 CONTACT: Jessica Nichols jknichols@uabmc.edu …

1 day ago

CourageousMom

CourageousMomasked the question: Nursing pt rehab centers vs at home nursing palliative/ hospice care?

My mother is in hospital the past week because of an exacerbation and pneumonia. My family wants her to try pt rehab. Most of the pt nursing places have bad reviews by patients and family. Should she go to a place that is below or average, or just do …

2 days ago

Jamie Sullivan

Jamie Sullivan Just wanted to thank everyone for the amazing responses we have received so far regarding your stories with supplemental oxygen. If you have not completed the short survey yet, it's not too late! Please help us identify those who have experienced challenges getting access to the right oxygen by going to http://bit.ly/2LtWXfk and sharing some basic details.  COPDF team members will be sorting through the responses and reaching back to as many people as possible to talk through your story further and we will write as many features as we possibly can to shine a light on this critical issue!  


If you are experiencing an active, ongoing access issue, please don't forget it is critical to report it officially to 1-800-MEDICARE and our Info Line associates (866-316-2673, can complete a form to record your complaint and help make sure you get the info you need to report it to MEDICARE.  


We continue to work with our fellow patient and professional society advocates in DC to push for short and long term solutions that will result in people getting the right type of oxygen at the right time for their individual needs.  We will update everyone on the work underway soon and can't thank you all enough for lending your stories to the efforts!

2 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Inogen One g3 repeatedly turning on and off

I'd try all the things suggested and then do the exorcism!

2 days ago

Tony

Tonyanswered the question Inogen One g3 repeatedly turning on and off

The only logical explanation is that the unit is possessed. Try an exorcism. :-)

2 days ago

Mobal

Mobalanswered the question Getting to Know the Community: Two Truths & One Lie

Time to pony up so to speak. #2 is a lie. No horses. 1. I was born just north of Pittsburgh 3. I was in Fort Lauderdale teaching automotive techโ€™s for Carquest when Katrina made first land fall in Fort Lauderdale. Flew home out of Orlando the …

2 days ago

Deborah A

Deborah A

I am doing okay. I seem to have tightness in my chest but it could be because I live in Houston and it is humid.  ๐Ÿ˜

2 days ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Inogen One g3 repeatedly turning on and off

It sounds like it needs to be reset. To reset, unplug and remove battery. Wait 10 minutes and then plug in power adapter and turn unit on, then insert battery.

2 days ago

Ken W

Ken Wanswered the question Inogen One g3 repeatedly turning on and off

Make sure the battery is charged and clean the air intake screens....otherwise call Inogen.

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.