Stephanie Williams, RRT

Stephanie Williams, RRTWe need you! Yes, You!!!๐Ÿ˜Š

Have you been seeing our posts recently asking for participants in different COPD Foundation focus groups? Have you been scrolling past them because you aren't sure we are looking for your help? Do you have questions about what it is like to participate in these groups? Wait, what is a focus group?

If those questions sound familiar, and you would like to learn more about what participating means and how your experience can help us, then join us for an informal conversation on Tuesday, January 29th from 2:00-2:30 Eastern Time.

We would love to have COPD patients as well as family members/caregivers attend.


Feel free to reach out to me with any questions at swilliams@copdfoundation.org

Register here for this free event so we can be expecting you!https://attendee.gotowebinar.com/register/2782250798573779724




2 days ago

Wheaties

Wheatiesanswered the question Anyone use Inogen G3 Pulse Dose while Sleeping?

I used my G3 when traveling this past summer. We were on the road for 4 weeks. I used my G3 while sleeping without a problem . I just set it on the floor and used a 7 ft. When we were at the same place for a week, my O2 distributor had a concentrator …

20 minutes ago

ElizabethEve

ElizabethEve

My mother (77yrs old) has copd and recently told me she can't afford the meds her pulmonologist keeps prescribing to find a "golden combination" to be of most benefit. What resources are available for elderly on medicare to afford these breathing treatments? Help?

59 minutes ago

  • clipper (Debbie) - NJ State Captain Itโ€™s a difficult situation without a good answer. Most of the pharmaceutical companies will provide some assistance if you meet their requirements. They donโ€™t make it easy to qualify. 

    Depending upon the Medicare insurance your mom has, they might cover one brand but not another similar inhaler. For example Symbicort and Breo are not the same but they are similar inhalers. Insurance might not cover Breo but might cover Symbicort.  You have to work with the pulmonologist office to figure that out. 


    There are three main classes of medications : LABA, LAMA, and ICS. The inhalers are usually combinations of these. There are no generic inhalers, thatโ€™s part of the problem. However some of these types of medications come in liquid form that are nebulized. Stand alone meds for a nebulizer are cheaper than the expensive combo inhalers.


    Some medications can be purchased online overseas. One site that I and others have used is AllDayChemist.com. Symbicort retail in the states is about $300 per inhaler. Overseas you can buy the equivalent for about $16 per inhaler. 
    Not easy but there are ways.20 minutes ago
DIck/NE

DIck/NEanswered the question Anyone use Inogen G3 Pulse Dose while Sleeping?

I use O2 when sleeping and when active. I have always been told to use constant flow when sleeping, When I travel my O2 provider arranges to have a regular concentrator waiting in the motel room at my destination. I do want to try a portable for driving …

1 hour ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Does anyone else get leg cramps from their meds?

Yes, Bill. You are so right. That is very important. โญ

1 hour ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Does anyone else get leg cramps from their meds?

Just want to make sure everyone gets needed bloodwork before starting supplements especially calcium, potassium, magnesium or vitamin D or iron let your doctor know to make sure it is safe for you to take! Some supplements can cause irregular heart …

2 hours ago

BabyB54

BabyB54answered the question One good thing?

I embraced a newcomer (verbally and hopefully emitionally) at the pulmonary rehab group I attend. I know how lost and alone I had felt at my first few sessions. I actually broke a small sweat for the first time since?????Ha!ha!

2 hours ago

BabyB54

BabyB54answered the question 46 and just diagnosed with Centrilobular Emphysema

Tonya, Hi...it is super hard not to be scared of a diagnosis. I too have centrilobular emphysema. I have asthma, as well. Please stay strong and don't be scared. There are numerous medications and therapies to help you. The Copd Foundation is a very …

2 hours ago

Sheryl

Sheryl

I am okay today, lonely

3 hours ago

Cat G

Cat G

 Does anyone have a recommendation for a Pulse Oximeter they like? I bought one, brand Drive Medical, at the Mayo Clinic store. For me it registered 85,  but then tried it on a healthy person who said they always run about 100. It registered 67. Took it back to the store and had the sales associate try it on her and it said 65. Both of them had cold hands. Are there any that work even if your hands are cold? Do I just need to run my hands under warm water before trying to get a read?

3 hours ago

Tonya1

Tonya1asked the question: 46 and just diagnosed with Centrilobular Emphysema

46 and just diagnosed with Centrilobular Emphysema. The doctor was surprised that my Ct scan showed this I have no symptoms of this only the shortness of breath that came out of nowhere. On Wednesday. Scared and freaking out. Could this be a miss dia

4 hours ago

clkuenzi@gmail.com

clkuenzi@gmail.comanswered the question Stem cell therapy, did anyone get improvement, energy, better breathing?

After 21 years dealing with this terrible disease, I find it disheartening to see no real breakthrough in a cure. Then I had several friends, two of them healthcare professionals who bummed me out even more. They said big Pharma isn't interested in …

4 hours ago

clkuenzi@gmail.com

clkuenzi@gmail.comanswered the question One good thing?

I'm doing what I've done for 21 years since my diagnosis. Exercise religiously every other day. With fail! Upper body exercises - chest, abdomen, back, arms. This really helps breathing. Leg lifts. I walk as much as I can. As I mentioned before when I …

5 hours ago

DanK

DanK answered the question What to expect

Glen.Blair , your father is blessed to have such caring children and your wife to care for him. Hang in there and try to make the best of your remaining time with him.

5 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Does anyone else get leg cramps from their meds?

Bill66..... me thinks you are right!!

7 hours ago

PompeyButch

PompeyButch

Hi Folks, New member, just got chest xray results. ...Marked hyperepansion consistent with advanced COPD with probable postoperative and postirradiation in the right chest. Ill-defined focal patchy density right lower chest suggests an infiltrative process of indeterminate chronicity. CT correlation recommend. 
Wow!!!
What does all that mean?
Doesn't sound to positive though, so I thought I'd seek out some support.
I dont see my NP for a follow up until Thursday 1/24....long time to just sit and be...
Thanks for your community and all you folks, i believe we can all unite and lift wachother up using a group power that has no limits
:)

8 hours ago

Ken Benson

Ken BensonWorth the read.   https://perf2ndwind.org/these-5-habits-could-add-10-years-to-your-life/

9 hours ago

GhostCard

GhostCardanswered the question Does anyone know where to find the optimum inhalation volume per age.

https://www.clockmedical.com/customer/docs/skudocs...

10 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Does anyone else get leg cramps from their meds?

Debbie, I have had the same thing happen to me. The one where the leg turns is downright creepy. Foot cramps were horrendously painful. I moved around and stretched until it stopped. Hardly ever happens now, but it could start again. Yeeeesh. Me- Bevespi …

11 hours ago

NuNu

NuNu

Hello everybody! I just joined and I feel better already reading your posts. I was diagnosed 3 years ago but have been in a state of denial, I think. Recently I've been having panic attacks so have decided I need to change some things. Great to know you all are here. 

11 hours ago

Jamie Sullivan

Jamie Sullivancommented onImportant Alert for Medicare Patients Who Use Supplemental Oxygen

 Hi Tom,Thank you for sharing and I am sorry you are having to deal with this difficult situation. Your situation is exactly what we are fearful of during this gap period and it is critical to report this so that the Centers for Medicare and Medicaid...

11 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Does anyone else get leg cramps from their meds?

I was for the longest time getting them most nights. Not in my calves or thighs but in my feet, lower legs/ankle and a weird one in my knee that made my lower leg turn. It was awful and nothing worked for me. I hardly ever have them now. My medications …

12 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good morning! Yes, it's another Fluffy Friday!! Today we have a picture of my sister's husband's aunt's dogs. They are both rescue dogs. โค

18 hours ago

revnb

revnb

The air quality here in Ogden, UT. is very bad. I cannot go outside, Dr. orders,  Even indoors with oxygen I'm having a hard time.

18 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

I'm excited--my UCSF pulmo just get me pre-authorized for a year of Yupelri (the nebulized LAMA).  I hope that it has fewer side effects for me than Spiriva.  I got such dry eyes (and high resting heart rate) from Spiriva that we had to cut me back to MWF instead of daily.  We are hoping that this new medicine that FDA approved Nov 2018 which was developed by Theravance and is being marketed by Mylan will help me have better lung function with few to no side effects.  



I was informed that they would be going to have a discount coupon so that I will have no copay sometime tonight.  If not tonight, then "soon."  They are also trying to get it to have no copay on Medicare B for folks who qualify for Medicare (I'm too young and healthy currently).  The full price with no discount is about $1200 (just like Lonhala, which is Sunovion's nebulized LAMA that comes with its own nebulizer that you have to use to get the medication).  I believe Sunovion has some discounts as well.  So far, my dad's pulmo isn't aware of anyone who has gotten our BCBS insurer to pre-authorize taking Lonhala.  I'm pleasantly surprised we were able to get them to authorize Yupelri.


The Yupelri allows you to use any jet nebulizer.  They did their clinical trials using the Pari Trek, IIRC.  I will report back on how I do with this.

21 hours ago

Tony

Tonyanswered the question Does anyone else get leg cramps from their meds?

I had to quit Advair and Symbicort because of cramps. I tried to counteract each with calcium, potassium, magnesium, tonic water, and increased water intake, but could not find any combination that worked.

21 hours ago

Sharo

Sharo

Not a real good day , SOB, took last predisone yesterday, taking 2nd round of antibotics, last one tonight, had stitches taken out today, I picked my friend up at airport, its very cool and windy for florida, spent 4 hours shopping yesterday, this evening when I took my 02 it was 88, then 89, then 90, all over the Board, The weather here has been 64 daytime , 69, 72, windy 49 at night, could this be causing this ? I have coughed a little, got some mucus up. I even used my rescue inhaler three times  today.  I am never 88. Pamboo, forgive me for being rude and selfish, welcome to a great place with so many wonderful people.  

23 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • CarolineI hope that you start to feel better once the stitches come out.6 hours ago
  • Sharo Debbie and Caroline, God Bless you both, I called my Doctor, I couldn't breathe, this was  12:30 today. He had me inhale the Aonoro while talking to him, After about 15  minutes I I can breathe and for the rest of the day , and now I can breathe, I hate the side effects it has on it, for now I am only to use it once a day,  No nebulizer,  just it. I have started doing watercolors , and after the SOB thing, I broke down. Ken wrote a nice thing about how long we could live. Made me feel better,  Debbie What can I do for you and others, I love to paint people, I'm not the greatest at it but it helps keep me sane. I will have my son post some on here that I did last year when I was here. With God's Love. Sharon Botkins Wilder.2 hours ago
  • DebbieB.-Connecticut State CaptainWhat I would like you to do is : do things that make you happy. Painting is a good thing! Whatever else you enjoy! I am glad that you are working on your anxiety. Let's work hard to say goodbye to anxiety forever! รทรทI would like to see you smile. One of those will last a while. Each day is such a gift. Your inner beauty gives your spirit a lift. Feel free to enjoy your life. Only happiness, no more strife. รทรท1 hour ago
Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Does anyone else get leg cramps from their meds?

Caroline is right, I always drink lots of water, I've craved it since I was a kid, anyhow my Doctor gave me a script for physical therapy for my cramps as well as increasing my water intake. Im thinking its a combination of Meds and a side effect of COPD!

1 day ago

Caroline

Caroline

This evening I feel like me again.  I am not totally out of the woods, but can see the light filtering through the trees.  My doctor's office called to day and he gave me a prescription for amoxicillin.  He said he was afraid that even though the congestion seemed much better that if I stopped with antibiotics now that it would just come back.


Thank you for all of the wonderful people here who make me feel wanted.

1 day ago

Tom G

Tom Gcommented onImportant Alert for Medicare Patients Who Use Supplemental Oxygen

 I have used liquid oxygen foe 13 years. On Jan. 14 2019, I was notified by the driver that I would no longer be getting liquid O2. The manager of the Lincare office in San Antonio TX. that services my account couldn't be bothered to notify me of this...

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

Recently, a neighbor and I donโ€™t know who has been putting my garbage and recycling bins out and bringing them back in for me. I think I know who it is maybe but I know I am lucky. It was nice tonight coming home from work and not having to wheel those things up my driveway. 

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainEnough said...

1 day ago

Carriekd

Carriekd

Hi, I havenโ€™t been diagnosed yet , I had an x Ray and expect results tomorrow, I am very afraid so I want to thank people on here for your positivity, itโ€™s just what I needed x

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Does anyone else get leg cramps from their meds?

LOL!!! I'll just tell my mother not to drive. Ohhhhh....she'd love that concoction!!! 🍸

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Does anyone else get leg cramps from their meds?

My mother suffers from leg cramps. Her primary care doctor has her drinking tonic water as well.

1 day ago

Ben A

Ben Aanswered the question Does anyone else get leg cramps from their meds?

Symbicort causes me to get muscle cramps as well. My pulmo suggested drinking tonic water (for the minute amounts of quinine) and it seems to help prevent them.

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question One good thing?

As far as the cookies and sweets go...I love to bake. If it is a special occasion such as Christmas, or someone's birthday, then it is okay for me to bake for someone. It is not an every day thing. Either I package the goodies up as soon as they are …

1 day ago

edpe77

edpe77answered the question Medications from All Day Chemist in India

Thanx I just need to order them. I was getting Symbicort directly from AstraZ... but they have discontinued that program for Part-D patients. ed

1 day ago

ScottyRoss

ScottyRossanswered the question What to expect

Glen, I love your courage please keep up th

1 day ago

Jamie1261

Jamie1261answered the question Medications from All Day Chemist in India

I order my COPD meds from Canada. I use Spiriva and Symbicort. Both meds are very reasonable. You can get brand name Symbicort or their generic which is called Foracort. It is identical to Symbicort and comes in the same strengths just a bit cheaper than …

1 day ago

Jamie1261

Jamie1261answered the question Does anyone else get leg cramps from their meds?

Yes I too get the night time cramps in my legs and feet. I found if I drink a lot of water throughout the day it helps.

1 day ago

Prest0n

Prest0nanswered the question Severe cough in the morning with shortness of breath

das23 -Thankfully, smoking is no longer an issue. I've tried to quit many times over the years, but with all the medical issues I've had recently and the seriousness of loosing your breath; the desire to smoke is no more (I've used nicotine …

1 day ago

Glen.Blair

Glen.Blairasked the question: What to expect

A little late to this forum. My Dad's COPD leads me here. My younger sister, myself and my wife are caring for him. We think he is in the final stage of this horrible disease. He is 85 years old. My younger sister lives there at home with him, she has …

1 day ago

Kristen Willard

Kristen Willardanswered the question One good thing?

I am eating a lot less sugar. Around the holidays I found myself craving it -- eating too many cookies and candies only made me crave it more! And it left me feeling tired. For me, the easiest way to address things like this is to cut them out completely …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good morning all. I know that where I live in Connecticut, the low temperature on Sunday is supposed to be 6 degrees. If you live in a place where there will be extreme cold, take precautions. Do your errands when the temperature is not extremely low. Steer clear of car exhaust and fumes while your car is warming up! Refill those prescriptions while you can get out to do it. Cover your face when you are exposed to the cold. Use your maintenance medications as prescribed. Carry your rescue inhaler with you at all times. Keep hydrated!!!! And....remain positive!!! ๐Ÿ˜˜

1 day ago

Tony

Tonyanswered the question Which brand portable oxygen concentrator do you use?

A couple of facts that might bear on the discussion. 1. The maximum output of the Simply Go Mini is 1 LPM. 2. The maximum output of the Inogen One G2 is 1.26 LPM. The setting choices on each machine produce puffs of 88-95% oxygen in volumes determined …

1 day ago

judg69

judg69answered the question Which brand portable oxygen concentrator do you use?

I have a Simply Go Mini , and it works fine for me for regular, non -strenuous activities. I consider it very portable. As earlier mentioned, the really portable pocโ€™s are pulse flow and usually only sufficient for those of us on 2.0 lpm or less …

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.