Jean IA State Captain

Jean IA State Captainanswered the question Doctor says end stage copd for husband along with many other health issues

What does his doc tell you when you ask about a plan of care? Have you asked what he can do for himself? These two questions ought to get the ball rolling with his doc, because what you really want to know is whether you can expect any changes and what …

43 minutes ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Where do you put extra small tanks in car so they are secure

Jean, definitely slick🤘

46 minutes ago

Jean IA State Captain

Jean IA State Captainanswered the question Where do you put extra small tanks in car so they are secure

Years ago I used a cardboard wine bottle case with inserts. The tanks were n=just the right size to fit in the case and it kept them from bouncing around the trunk. Worked slick.

48 minutes ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Forgot sinusitis and COPD seem to go hand in hand and yes I have both, so painful I can barely chew and on top of the long shifts, I cant sleep well, just started ceftin and hope it clears quickly.

51 minutes ago

Mobal

Mobalanswered the question using a walker

To me, COPD and rain is a bad combination. I seem to get a cold after getting wet while walking, or doing chores.

1 hour ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question using a walker

Ed, good answer, made me laugh!

1 hour ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Dear Mr. Wornstaff: Thank you for contacting me to express your support for the Patient-Centered Outcomes Research Institute. Your opinion is very important to me, and I appreciate the opportunity to respond to you. I was an author and vocal champion of the Affordable Care Act (ACA, P.L. 111-148), which created the Patient-Centered Outcomes Research Institute (PCORI). As you know, PCORI funds research to evaluate the relative clinical effectiveness of medical interventions. I understand the vital importance of PCORI’s work to ensure that providers and patients can make well-informed health care decisions. The ACA established a ten-year trust fund to support PCORI’s mission. While PCORI’s funding was set to expire at the close of fiscal year 2019, the continuing resolution signed by President Trump on September 27, 2019 included a short-term extension. Legislation to further extend PCORI’s funding has not yet been introduced in the Senate. However, I will certainly keep your support in mind when such legislation is introduced. Again, thank you for sharing your thoughts with me. Please do not hesitate to contact me if I can be of further assistance to you. I invite you to visit my website (http://menendez.senate.gov) to learn more about how I am standing up for New Jersey families in the United States Senate.

2 hours ago

perkyH

perkyHanswered the question Anyone been diagnosed at 40 with negative alpha

I found out in 2013 and was still smoking. I started to use a vapor cig after diagnosed . Last January I had Takotsubo know as stress cardiomyopathy. I was in IC for 5 days.That really set me back. I have since gone to Pumo Rehab and stated exercising. I …

4 hours ago

edpe77

edpe77answered the question using a walker

Yes if you want to walk in the rain! {Or sing} ed

4 hours ago

Jamie Sullivan

Jamie SullivanSusan Estrella, a PA State Captain, asked me to pass along the flyer for a great event they are planning for patients and families on November 4th. If you are near Philadelphia I hope you will consider participating! I will be there with COPDF materials and would love to see you there! I am going to post the flyer in pictures and here is the registration link. 
 
http://bit.ly/2kSU00x

4 hours ago

perkyH

perkyHasked the question: using a walker

Question I use a walker to go long distances. It helps me not be so short of breath plus I have a place to sit when needed. My question is do people use them in the rain? thanks

5 hours ago

Peter.RT

Peter.RT

Wanted to share with everyone that on November 5th, a COPD seminar will be held in Philadelphia from 7:45am to 8pm. The cost is $200. It would be a great opportunity to learn more about the disease and expand your connections. I will be attending, so if your live in the surrounding area and this is something your interested in attended I have included a link below to sign up.
Thank you.
http://www.cvent.com/m-events/Info/Summary?e=cc7939b6-b48a-44d4-828c-82bef557ac82&dvce=0

5 hours ago

Joe

Joe answered the question Anxiety or Copd related?

Kattlyne, best advice here is to see a medical professional as soon as possible. Don't wait, play it safe so you have peace of mind. Some people don't tolerate albuterol well and they report feeling "jittery"... again not saying this is what's going on …

5 hours ago

Merlin

Merlinanswered the question Copd diagnosis

Hi, thank you very much. I am in the uk and dont have a pulmonologist, I was just given this diagnosis and result by my GP a week a week ago when i went for an emergency 5 min appointment for breathing difficulties. I will certainly insist on being …

6 hours ago

das23

das23answered the question Does this sound like COPD?

You need to see a Pulmonologist and be tested to find out if you have COPD--You don't want any maybe answers--Congrats on quitting smoking-that is huge and will help you no matter what you do or do not have

6 hours ago

muddleaged

muddleagedanswered the question Where do you put extra small tanks in car so they are secure

Mine are in a padded bag that frozen meat was shipped in. An old towel keeps them from rattling together.

6 hours ago

Duckgrovecity

Duckgrovecityanswered the question Doctor says end stage copd for husband along with many other health issues

yes I do and the 7 liters keeps his o2 around 88-92. He is on breo once a day and albuterol nebulizer four times a day. It’s amazing what I have learned so far but I still have so many questions of what to expect.

6 hours ago

FunkatronJive

FunkatronJiveanswered the question Still searching for answers

Sorry, I dont have a response regarding the feeling after smoking..... My mom was diagnosed with COPD 7 years ago..... she refused to stop smoking.... in just the 7 years, it is insane how quickly her health has declined. We take each day one at a time.. …

7 hours ago

loganob831

loganob831asked the question: Does this sound like COPD?

I (27M) quit smoking about 3 weeks ago (10-12 pack years) and my anxiety has gone through the roof. I made an appointment with my Dr. but that's not coming up for another week, and in the meantime I've been driving myself crazy with uncertainty: Pretty …

7 hours ago

Lungguy

Lungguyanswered the question Doctor says end stage copd for husband along with many other health issues

Indeed, i agree, age 50 is young for all of those serious problems. A 7 LPM oxygen flow rate is very high. Do you have a pulse oximeter with instructions from his lung doc for titrating the oxygen? What inhalers is he taking for his COPD? There are many …

7 hours ago

Kristen Willard

Kristen Willardasked the question: Are you a family member of someone with COPD?

Researchers at JohnsHopkins University are conducting a study testing the ways doctors communicatewith family members of people with COPD. You can help with thisstudy by completing a survey that takes about 15 minutes. Please click onthe link below to …

7 hours ago

Lungguy

Lungguyanswered the question Still searching for answers

Ask your doctor about varenicline or bupropion along with a fast acting nicotine to help you quit smoking. A recent study found that only 15 percent of current smokers with COPD had been offered these drugs which boost smoking cessation rates to about 40 …

7 hours ago

Duckgrovecity

Duckgrovecityasked the question: Doctor says end stage copd for husband along with many other health issues

my 50 yo husband had multiple strokes in January. He has end stage copd, diabetes, pfo of heart, hypertension, multiple blood clots including pulmonary embolism. He is on lovanox 150 mg injections twice a day. He just spent another 19 days in hospital …

7 hours ago

Jimmy S

Jimmy SChange is always occurring and we need to adjust and adapt in a manner that we can see the good in these differences. If there are things in your life you want to change, you don't change them from the outside in. You change them from the inside out.Breathing is one of the greatest gifts God gave us. No one knows that better than a COPD patient. When the breath is unsteady, all is unsteady; when the breath is still; all is still. Control the breath carefully. Inhalation gives strength and a controlled body; retention gives steadiness of mind and longevity; exhalation purifies body and spirit.Whatever it is you are lacking in your life there is no better way to change that than to thank God for what you already have, no matter how small it may be and watch what God does with it. I hope each and every in here today is breathing easy and learning what they can do to help their lungs stay happy.If you are carrying a lot of tension in your mind and body, your nervous system goes into the ‘fight or flight’ mode where healing stops. In this state, your body uses up all its resources to stay alert to safeguard itself from possible danger.But when you feel relaxed and joyful, your parasympathetic nervous system takes over and your body returns to the ‘rest and digest mode‘ which is the state where repair, restoration and healing happen.So if you seek healing, you need to learn to give your mind and body much needed rest and relaxation. You need to believe in your body’s intelligence and its abilities to heal and give it your assurances. You need to give your body all your love and attention. Letting ourselves be forgiven is one of the most difficult healing we will undertake. And one of the most fruitful.

8 hours ago

Gretchen McCreary

Gretchen McCrearyCOPD Foundation - FDA Patient & Caregiver Connection SurveyWe at the Center for Devices and Radiological Health (CDRH) at FDA are pleased to collaborate with several patient advocacy organizations such as the COPD Foundation, as a way for patients and caregivers to share their experiences with disease conditions and the use of medical devices for their diagnosis and treatment. Our ability to evaluate medical devices and monitor their safety is optimized by the valuable feedback and information that patients and caregivers like you can provide, and we appreciate any information that you are willing to share with us.This pilot survey is being distributed to members of the COPD Foundation such as yourself so that you can share your perceptions living with or caring for those with a specific disease, your experience with medical devices, and any related issues that are important to you. This information will help us to gain a better understanding of the patient and caregiver experience and identify areas of concern.We thank you for your time in answering our questions. Your responses to this survey will remain anonymous. Once complete, the survey results will be shared with your organization. Clink on link for survey: https://www.surveymonkey.com/r/56PG7TY

8 hours ago

Le Carlat

Le Carlat

My wife’s oximeter shows O2 drops of 4% or more and they are increasing at a noticeable rate,
which is also coinciding with an increased shortness of breath with even the mildest exertion.


During very slow daily dog walking and exercise bicycle my wife has oxygen at 1 litre per minute.

Could anyone please explain what causes the sudden drops even during relatively low activity levels.


Thank you.


8 hours ago

  • NewestOldest
  • clipper (Debbie) - NJ State Captain If this is a change in her symptoms, if she is getting worse, I strongly recommend you call her pulmonologist. 

    Low O2 will trigger it, the brain gets a chemical message that it needs more O2 and that results in breathing harder. She should use an oximeter to check her SpO2 while walking, she may need to turn her O2 up. It can happen so easily with COPD because the lung damage interferes with the ability to exchange O2 between the lungs and the bloodstream. Specifically it interferes with the ability to get the CO2 (a waste product of using muscles)  out of the blood and replacing it with fresh O2. 

    It can be cause by air trapping. A healthy person wouldn’t notice that they are breathing a little harder. With emphysema the lungs lose their elasticity, when we exhale the bronchial tubes collapse trapping air in the damaged parts of the lungs (dead space). Each breath we take stacks up on the last one making it harder and harder to breathe with each breath. It’s like blowing air into a balloon that is full and it happens quickly for some. 

    Muscles convert O2 to energy. Muscles that are out of shape need even more O2 for a task, even something as simple as walking. People who are out of shape will get short of breath faster.

    If your wife hasn’t done pulmonary rehab it will most likely help her. She will get into better shape making her more O2 efficient. She will also get pretty good at pursed lip breathing which helps with the air trapping.  Exercise is key to mitigating shortness of breath. Talk to her doctors about PR or a good exercise program for home. 6 hours ago
  • CarolineThe drop in oxygen of 4% may not be alarming unless it drops for no apparent reason, or drops below 88%.19 minutes ago
JeanO53

JeanO53answered the question Where do you put extra small tanks in car so they are secure

I keep my spare tank wrapped in a blanket in the trunk of my car.

8 hours ago

JeanO53

JeanO53answered the question Still searching for answers

Hi Katherine58 - If you are feeling light headed while smoking a cigarette, it could be because smoking can reduce the amount of oxygen your lungs can generate which means less oxygen in your blood, which means less oxygen for your brain and the rest of …

8 hours ago

edpe77

edpe77answered the question Where do you put extra small tanks in car so they are secure

I have a small box that has essentials, like kleenex etc. I put the spare tank in there, on the floor of the passenger side. This works because I rarely have passengers. Another option to consider would be the trunk, situated close to the forward wall. …

9 hours ago

K STEELE

K STEELE

☺ Waiting for someone else to come out of Dr  office. Cold down here today. Got the joke now DebbieB.  Thanks for info. That is funny!!!! Glad you are feeling better.
Morning Kattlyne!  Thanks for being my friend. 😉

9 hours ago

Katherine58

Katherine58asked the question: Still searching for answers

I’ve been diagnosed with copd and emphysema - 59 - on ventolin, Incruse and advair. Went from 1 1/2 packs of cigarettes to 15 - want to know for those of you that still smoke - do you feel sort of drunk or anxious after smoking a cigarette - I’m not on …

9 hours ago

tibs

tibsasked the question: Where do you put extra small tanks in car so they are secure

I would like to know how to safely travel with extra small oxygen tanks in car

10 hours ago

Vinny1011

Vinny1011answered the question 27% fev1 vs 53

Dont know what my % is but Ive been on O2 at 3 liters a minute for a year. I need oxigen anytime Im moving around or active or during any exertion. Not while sitting still or driving! Still very active. I take my Portable Oxigen Concentrator everywhere …

10 hours ago

das23

das23answered the question Copd diagnosis

Hi Merlin.....Maybe you should get further testing--maybe a new Pulmonologist--You should get tested for Alpha-1 seeing as you never smoked. You have symptoms that a lot of us have when we get a chest infection--with the proper meds you should be able to …

10 hours ago

Kattlyne

Kattlyneasked the question: Anxiety or Copd related?

hello, everyone!!! I am 12 days into this chest cold and it is slowly getting better. My breathing is usually worse in the mornings and a little better during the day. I am using my albuterol inhaler through out the day. The last couple of nights i have …

10 hours ago

Merlin

Merlinanswered the question Copd diagnosis

Thank you, i have been reading peoples experiences and it is a great help. I will do as you advise, i was really struggling at the end of the test which was taken before the sabutamol and then 15 mins after taking it. It was the after the inhailor which …

11 hours ago

Joe

Joe answered the question Copd diagnosis

Merlin I'm not an MD but my advice is to get another opinion from a Pulmonologist in your area. 8 tries to get a similar reading from spirometry does not give me confidence...plus the reading might be skewed after that many times. There are many great …

12 hours ago

Merlin

Merlinasked the question: Copd diagnosis

Hi, some advice please. I started to experience feelings of suffocation around 6 months ago. I have had mild ashma from the age of 40. I am now 64. I thought it was from my pet macaw who i have had for 20 years but recently moved into my living room. I …

12 hours ago

netmouse

netmouseanswered the question Intermittent drops in oxygen saturation to mid 80's

It may be heart related. I agree see cardio doc for a echo and also a nuclear stress test. If afib, which can be a brief episode and hard to document, you can get a personal EKG device. At this website, you can get the Kardia Mobile (FDA approved and …

14 hours ago

das23

das23answered the question 27% fev1 vs 53

Hi tomtom...I agree with the others---Keep doing all you can-numbers or no numbers-That's what I'm trying to do-You're not smoking and that is huge-Good Luck--Anxiety and fear can be tough-I know-I try to think of the progress I've made when they creep …

19 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question What kind of medicine do they have for nebulizer my doctor want me on trilogy I cant afford it

Long acting muscuarinic antagonist for Part B Medicare is Yupelri (once daily). Long acting beta agonist are either Brovana or Performist (twice daily). The steroid available for nebulizer is Budesonide and made in several different strengths. Talk …

19 hours ago

Lungguy

Lungguyanswered the question 27% fev1 vs 53

Hi Tom, if your lung CT scan showed patchy areas of emphysema, you might be a candidate for LVRS or Zephyr valves. Keep doing the things you enjoy the most.

20 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question 27% fev1 vs 53

Good point Joe!

21 hours ago

Jaro15

Jaro15

I'm doing well.  I am wondering what the most popular, and best user-rated travel nebulizer is for the money.  I borrowed a Trek-S but I probably have to buy my own because I think Medicare won't cover it, although they did cover this loaner, because I forgot to bring it on vacation!...  Jackie in Oregon

21 hours ago

bobboberson

bobbobersonanswered the question FECO

Hello Eric the Red I have been slow in responding myself.As to the original question I live in Canada I can grow whatever I want.With in reason. my Cannabis useage is limited to edibles only. I turn all my weed into either cookies or chocolate. …

22 hours ago

Joe

Joe answered the question 27% fev1 vs 53

Not an MD... How you feel is a much better indication. Some patients have an FEV1 of 50% predicted, feel awful while others feel great at lower numbers. The numbers don't always correlate with how a patient feels. Your FEV1% at any given time can vary …

22 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question 27% fev1 vs 53

My FEV1 is 28%. I can’t sand and paint a truck but I still work and I exercise at a gym. It sounds like you are doing ok to me. If it was me, I wouldn’t stop living because of a piece of paper. FYI I would be careful about the dust from sanding the …

23 hours ago

tomtom

tomtom asked the question: 27% fev1 vs 53

I recently found my original spirometer tests. The first was July of 2004 showing 53% The latest directly before my flare up and hospital stay and when they put me on o2 from what I can see and I’m not positive I’m reading it correctly is FEV1 27% but …

23 hours ago

Grandma03

Grandma03

Hello everyone, I am new to the site. My friend is 67, and has copd, and I think, CHF. She’s been home from the hospital now 6 days. She’s been on oxygen now for about 6 months. She is very scared, and wants me to come see her everyday. Could use some advice with things to say to her. I keep telling her she sounds better, since came home. She was so weak though had to be carried in house, but is up walking now, a little, slowly. Blood pressure flew up to 170, so that really scared her. I visit tomorrow to be with her while the therapist comes. Her husband is taking care of her, giving medicine. I don’t know medicines she’s on, but know she is very bad and scared.

1 day ago

  • NewestOldest
  • Kristen WillardGrandma03, you are a great friend and we are so happy you found us! Sounds like you are very supportive and saying great things to your friend. Maybe you can show her some of the posts on COPD360social. It takes time for people to recover from being in the hospital, but many people here add back in exercise, pay close attention to their medication/inhaler/oxygen use, and work closely with their docs to get back to their baselines. Learning more from this community and her healthcare team can help her to become less scared. Thanks for being here!9 hours ago
  • Grandma03Thank you16 minutes ago
  • CarolineI agree with Kristen!6 minutes ago
Srilakshmi

Srilakshmianswered the question Intermittent drops in oxygen saturation to mid 80's

Thank you for your responses. Actually she hasn't had a spirometry test done, I think that's a place to start afresh. The thing is she'd be exhausted during an episode, almost to the point of unconsciousness at times so we haven't been able to get her …

1 day 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.