Its me again...

Its me again...

Oh wow so its me again.  Meega!  I had to make a new account.  Got a new phone.  Whew...

5 hours ago

joney

joney

Good Morning I am doing well how are you ? I am washing clothes today so that means I have to go up and down to the basement a few times so i'm taking it very slow I am feeling very blessed today 

7 hours ago

Izzy41

Izzy41

Good morning everyone.  Hope your day is blessed.  My husband seems to be getting worse.  He has had several different episodes so far this week and it is getting scary.  An aide was here this morning to help him shower and his oxygen saturation dropped to 56.  Last time it dropped so low he was put in the hospital for 2 12 weeks.  That didn't seem to help, in fact, I think it hurt him more.  They just gave him breathing treatments and steroids which they increased over the weeks to the highest dosage possible and it wasn't helping him.  We finally asked to be discharged and that is when he went into hospice.  It was either that or a nursing home.  When he went in he was able to walk but when he came home he couldn't even stand by himself.  We started doing exercises and he eventually was able to walk short distances which he can still do.  It is just his breathing.  It is so hard to watch him struggle for breath and I just pray everyday that he will be ok.  I guess I rambled enough, thank you for listening to me.  I just needed to tell someone as I am having a hard time trying not to get too depressed.  Thank you and God bless.

8 hours ago

Jimmy S

Jimmy SGood Morning


Well believe it or not i too am struggling and am on my way to the ER.  Hope everyone is doing good and having a great start to there day.

9 hours ago

patrickd72

patrickd72

Wow haven’t posted on here in awhile. Nice to see some familiar names. Been doing my thing. 4 years, 2 months smoke free. Easy to quit once the dyspnea began. About 3 weeks ago I noticed a change in breathing and this has happened before, usually goes away, sometimes on its own and other times needed to use my Dulera and or Spiriva. Not this time tho. So I’m on the inhalers which I pretty much have not needed to use regularly the past 4 years or so. Anyway frustrating, as 3-4 months ago I felt better than I had in a long time. Even did 3 backpacking trips, 2 up high, camping and hiking around 13000 ft. Even made a fire each night and unexpectedly inhaled smoke. Not even a cough. So that’s where I’m at. I suspect it’s an exacerbation and hope I can get back to where I was. Overall in the past 4 years, I noticed I have declined some. Wish were not true but is. 


For a long time looked as if smoking was the only thing to help slow preogression but the more I read, the more it seems the inhalers may help some too. So may just be the way it is for me. The dyspnea doesn’t bother me so much as the thought of not doing all I can to preserve what I have. 


Anyway long winded post and hope everyone is managing best they can.

10 hours ago

Chippie

Chippieanswered the question Questions regarding the Pulmonx Zephyr valves

I just received this information from the Pulmonx / Zepher valve organization: The Zephyr Valve is specifically approved by the FDA for treating severe emphysema; one of the characteristics of which is hyperinflation, or overexpansion of the lungs. …

10 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

Suggestion for the Journal of the COPD Foundation, add the ability to share an article on twitter or facebook. At the end of the articles there is an option to email the article to a friend but it would be nice if there was an option to share on other social media outlets. Unless of course there are copyright issues or something.

10 hours ago

skin

skin

I'm terrible.  Anxiety is so bad I'm sure it's making it worse.  My doctor doesn't know I have it.  I feel ashamed.  I was diagnosed ten years ago in a hospital when I was away on holidays.  No one knows but that hospital, I cry everyday.  I've also been sexually abused since I was four.  Five nights a week.  My life has been a nightmare since that age.  I'm too scared to tell my doctor because I still can't quit those 3 smokes a day.  I don't believe I deserve treatment.

13 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

So happy!  Today we had our board meeting and the pulmonologist who just joined our board has agreed to be our keynote speaker!  It is very exciting to have someone commit so early. She’s also agreed to see if Kaiser’s PR folks will help publicize it. 


Several of the attendees agreed to help get articles for our newsletter as well. We have also agreed to lend our spirometers to the local community college who wants to use them for their grant to provide services on our neighbor islands. 

15 hours ago

Made Pramana

Made Pramanaanswered the question Bronchiectasis and pulmonary hygiene

Hi Glady. Doing postural drainage is really good. I do chest percussion by myself to help the mucus thin. Drink many water to make the mucus thin. Moving our body through walking, exercise probably can help too. I never tried to nebulize hypertonic …

19 hours ago

Kristen Willard

Kristen Willardanswered the question Worried about my dad

Sending your dad and family my best thoughts, LMD. Everyone here has give great ideas. Please keep us posted and know we’re thinking of you and hoping he improves.

21 hours ago

Love my dad

Love my dadanswered the question Worried about my dad

He has some sort of respiratory virus. today they put a feeding tube in him. tomorrow I believe is the trach. just still in shock. My dad said he was going two days without sleep and could only sleep at the kitchen table. Then the day after he was having …

23 hours ago

Jean IA State Captain

Jean IA State Captainanswered the question Worried about my dad

Like everyone else, you have my sympathy. My suggestion is that you and other family members make a list of questions for the doc(s) who are working with your Dad and see if you can't get some answers that way. The privacy laws sometimes make it …

1 day ago

Bigk

Bigk

Feeling afraid scared tired

1 day ago

FunkatronJive

FunkatronJiveanswered the question Worried about my dad

I'm sorry I don't have an answer, but I hope things improve for your dad. Can I ask why they put in a medically induced coma? My mother was diagnosed with COPD about 6 years ago. These days there is less time between flare ups, or exacerbations.... she …

1 day ago

seattleite

seattleiteanswered the question Worried about my dad

This must be so scary for you! I am terribly sorry about your father and thinking about you and your family.

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota

Dr Oz yesterday had a live in surgery a valve replacement with catheter.  Was very interesting. 

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Bronchiectasis and pulmonary hygiene

Glady I just have bronchiectasis did bronchoscopy last Sept nothing was found I just had a lot of inflammation of which is my main prob besides bad lungs with several lung diseases. . A copd coordinator gave me this regiment to do every day. I get up do …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Puzzels - per Stephanie's request

I came up with Polish people and polish your English!! Also we have heard the name Job. Go get a job!!!

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

DanK ​ Thinking about you and wishing you the best for tomorrow.  I am so excited for you:)

1 day ago

Jimmy S

Jimmy SIt is during our darkest moments that we must focus to see the light.

Many people with COPD can better their quality of life with guidance,
especially when first diagnosed. I can’t enlighten you as to why every
patient isn’t referred to pulmonary rehabilitation classes or to a
respiratory therapist, but what I can say is if your doctor hasn’t
advised you about these options, you need to ask why.

1 day ago

Cape Codder

Cape Codderanswered the question Puzzels - per Stephanie's request

The Polish people polish their silverware

1 day ago

edpe77

edpe77answered the question Puzzels - per Stephanie's request

New challenge 19Feb19 What English word{s} Change both meaning and pronunciation when the first letter is capitolized??? ed

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Worried about my dad

I am so sorry to hear about your father. I can't imagine how hard this must be on you and the family. As Bill explained none of us can being to guess what is going on but there are people here that can answer questions and people here that understand.

1 day ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Worried about my dad

Without knowing the background and what exactly is going on, I doubt that there is much more we can offer you other than to sympathize and offer you and you family our prayers. I have a strong hunch that there is more going on here other than COPD, so …

1 day ago

Love my dad

Love my dadasked the question: Worried about my dad

hi my dad is 58 years old. Diagnosed with end stage copd in 2015. My dad always tried to make the best of things even tho his condition. Things have been fine for so many years until this month. My dad has been in medical induced coma since Feb 6th. They …

1 day ago

silent owl

silent owlanswered the question No help for me...

some days are rough for me also, but it does get better the more you learn about COPD. people can live a long life with the proper tools,.educate yourself and you will find a peace within yourself. god bless you.

1 day ago

Jimmy S

Jimmy SDon't ever let wearing oxygen slow you down. You are in control of your disease not the other way around. Love this!!

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Its been rough at CVS 2 managers down, a 16 hour day yesterday after 6 days of 10+ hours straight and I must of aggravated my hernia and it forced me now to go ahead and schedule surgery on March 21st, the surgeon gave me a partial ok to go ahead with the surgery, I'm going to get pre-tested to make sure I can handle the anesthesia, just worried about that those of us that have COPD are at a much higher percentage of aspiration pneumonia and other complications. Just needed to vent and share! Love You Guys Bill66

1 day ago

muddleaged

muddleagedanswered the question No help for me...

This is brilliant, Jean IA State Captain : "I think by this time you've figured out that this is not the end of the world as you know it. the only thing that changed between today and a couple of days ago is that you have a name for something you know …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Hi everyone! Well, been starting to feel something coming on. I called my immunologist today. I got a z-pack and I am doing a Prednisone taper. Doc says it seems like viral germs. Yuk. I am so careful about everything, but it happens. Will be seeing the doctor next Tuesday for a check-in.  If any of you start to feel that something isn't right, please give your doctor a call. 😀

2 days ago

Sharo

Sharo

Better, trying to be positive ,I am so  thankful,  still scared about what happened. Septis  is serious,  I pick up my medical records tomorrow and see a Doctor the 1st of March. My oldest son and wife are going to come and fly with me home , up North.  my COPD is doing good, I have a slight cough, very little mucus, which I get out, runny nose, very little SOB, guess the massive doses of IVVANCOMYCIN  MUST have helped it a little. Keep me in your prayers, emotionally I am having a problem . This seems to go along with this. God Bless all of you. With God's Love, Sharon

2 days ago

PamK

PamKanswered the question No help for me...

Leslierenee, you have to find a new Dr. and quit smoking too. I know it will hard but you can do it. When I was admitted to the hospital I had to quit. The nurse asked me if I wanted the nicotine patch and this has worked for me. I have been smoke free …

2 days ago

hyperphoria

hyperphoriaanswered the question Breath Training Explanation Please!

I found this site to be interesting: Natural Breathing Gently and slowly inhale a normal amount of air through your nose, filling only your lower lungs. (Your stomach will expand while your upper chest remains still.) Exhale …

2 days ago

PamK

PamK

Angie67, I too was put on the nicotine patch when I was in the hospital 3 months ago.  I agree with you this really works. I am still smoke free.  

2 days ago

Angie67

Angie67answered the question No help for me...

Just a few suggestions for when you begin your journey to being smoke-free. If your doctor says you can wear the nicotine patch do it. It really does help. I couldn't wear one only a few times because of my blood pressure. I also thought about my …

2 days ago

Prieto74

Prieto74answered the question Feel like the youngest :(

Yes, it is difficult to accept a diagnosis like this at any age, but I identify with you in the feeling that it is too soon. I like you, was diagnosed at 42 years old, I am now 44 years old, I am the father of two small children and with much to be done. …

2 days ago

Glady

Gladyanswered the question Making Doctors' Appointments Easier

Great suggestions, I was a health care provider (np) and case manager before I retired and these skills have be vital to my ongoing health care. Something else I always do before appt is to make sure any recent test results are available, and the date I …

2 days ago

Jimmy S

Jimmy SIf
you achieve all kinds of things in the material world, but you lose
your health or your peace of mind, you get little or no pleasure from
your other accomplishments. "You find when you pursue a life of
greater health and happiness, you then treat the body you have with
dignity, respect, and absolute care." "He who has health has hope; and he who has hope has everything."  I hope this finds everyone having a super start to their day.😎

2 days ago

Glady

Gladyasked the question: Bronchiectasis and pulmonary hygiene

what works for you? I frequently get pneumonia from the colonized pseudomonas in my lungs. Soon I will be getting "the vest," and I do postural drainage everyday. I have a nebulizer that I dont use, although I have the meds to use when needed. Is this …

2 days ago

Meega

Meega

I got some terrible news today.  One of my family members that was on hospice left to be with the angels last night.  36 years old mother of 2 little ones.  I remember when she was born.  Beautiful girl..

2 days ago

Marg Gordon

Marg Gordon

I am doing better then yesterday. It was a more active day.  Today is more relaxed. I am starting to feel depressed because  of the lack of things I can't do any more. I'm becoming more of a home body and withdrawing from people. Which I used to be very active and on the move all the time. I have gone through all the medical testing and I am on medication. Some days it seems to work better than others which I don't understand. I am looking for people who are in the same situation we can learn from each other to make our lives more bearable.

2 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Jean IA State Captain
    I strongly urge you to find a good cognitive behavioral therapist and get some talk therapy to help you come to grips with the anxiety and depression that often accompanies a diagnosis of a chronic condition.  It's very normal, and the talk really supports the meds and helps you figure out how to manage and control the anxiety and depression, just like you learn to manage and control your COPD.  I know, I see someone every month and have for years.  It helps me keep my head on straight.  I don't use meds; I use the techniques I've learned to help me manage without meds.  It helps a lot to know that I can control how I react to things that happen.


    Exercise helps a lot, too.  Talk with your doc about starting a daily exercise routine.  Maybe pulmonary rehab is possible.  If you do that, understand that it's pretty much a starter kit and you will need to exercise on your own on the off days.  Join a gym and exercise with the rest of the world.  Use what you learn n PR to get started.  When you join a gym you often get a day or two with a trainer who can help you figure out what you can do and get your acquainted with the machines and everything else.2 days ago
  • Cape CodderMarg, I can relate to what you’re experiencing.
    I try to remember to remind myself to take each day as it comes, to welcome it on its own terms, and try to learn the lessons it holds ... in peace and good will. 🌿1 day ago
  • Kandy State Captain of South Dakota With copd we have good days and bad days, each day seems different than the last.  Keeping a positive attitude will help. Wish you the best.1 day ago
Jean IA State Captain

Jean IA State Captainanswered the question Feel like the youngest :(

The first thing you need to do is calm down and start thinking about what logical thing you should do next. First, have you had a breathing test? If not, then the diagnosis is somewhat suspect, because a breathing test is the definitive diagnostic tool. …

2 days ago

edpe77

edpe77answered the question Stem Cell Treatments

FYI Per Dr. Roach's {Detroit News 18Feb19} comment below on Stem Cell Treatment... ed I do not recommend stem cell treatment at this time, apart from its use in combination with chemotherapy for cancer or immune system diseases. More data is …

2 days ago

TrishaP

TrishaPasked the question: Feel like the youngest :(

so last week i just found out that at 36 years old i have copd! 😭 i have 4 small boy's 2, 4, 6 and a 8 year old. I want to live to watch tbem gro and become amazing fathers that i know they can be! It kinda shocked me that i jave it but yet again were …

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good Monday morning, folks! For everyone who lives where there are slippery driving conditions:::be careful! 
At 5:00 this morning, there was a horrible, loud crash on the highway behind our house. Debris was being hit and dragged. The sound was horrible. A tractor trailer hit a car HARD and kept going. The car spun around and ended up diagonally, facing the wrong way in the center lane. Tears came to my eyes. We called 911. Even the dog was barking...it scared her. It took 30 minutes for the state police to get there. Took 1 hour for a tow truck. Be extra careful driving in wintery conditions! 😇 Have the best day that you can....and keep on smiling! Be thankful for each day, as it is a gift! 😊

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.