HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Well, good news so far.  On 7/20, received a letter from my O2 supplier that they were discontinuing my liquid O2 “in my region” and wanted me to switch to other options. 


My MDs and I objected and to I notified our US Congressional Delegation for my state, sending them the letter and my MD’s certificate of medical necessity. 


I received a call that day from one of our state US Reps’ staff person.  He also spoke with Jamie Sullivan of COPD Foundation and others. 


In less than a week, both my state’s US Reps signed letter asking my O2 supplier for a moratorium until we can convene a meeting with all stakeholders to get this resolved. 


Just got my regular automated phone call from O2 supplier confirming regular delivery, so it SEEMS like I should be getting my O2 as usual on Wednesday, thanks to help from many people/orgs:  my MDs, Jamie Sullivan, Sam Giordano, my US Reps Tulsi Gabbard & Ed Case & their staffers, Bill Clark, & Karen Deitemeyer.  Also others have provided additional support, including many members of the American Thoracic Society. 


Today, I was contacted by another staff member of Gabbard’s office. He said Medicare beneficiaries have the right to refuse to switch O2 systems unless patient and/or prescribed agree once the 5 year contract has begun. More about this will be posted on the US COPD Coalition website. (I’m not on Medicare, so that doesn’t apply to me.  Not sure what the contract for me says but may track Medicare.)

1 year ago

  • NewestOldest
  • Jamie SullivanKeep us posted Val.  If any others have received notices that your liquid oxygen service was ending PLEASE let us know asap.  You can email me at jsullivan@copdfoundation.org if you are willing to share your situation to help generate more support for the policy changes that are needed to stop this from happening!  It is also helpful to know if your doctor has prescribed liquid oxygen but you have not been able to get it.  Thanks all and thank you Val for being so proactive with outreach to Congress and others.1 year ago
  • HIcopd - Hawaii State Captain
    Yes, I've only been prescribed liquid oxygen so far by all my providers, but they did write me a prescription so I could purchase a portable oxygen concentrator so I can fly with it.  The DMEs have different ways of trying to "work with" (trick) patients and providers.


    My DME did say that they have other systems that I could consider (never naming brands nor models)  and I thanked them but turned them down.  They also called my HI pulmo and told him he can't FORCE them to deliver to me and that he HAD to change my Rx that day.  I was able to convince my pulmo not to make any changes.


    I sent them a letter asking them to specify precisely the brand, models, away time, weight, and other details about all the systems they propose to substitute for my current system.  They have NOT made any reply to the letter.1 year ago
das23

das23answered the question New too emphysema

Hi Phenomenal Woman...I am a not so phenomenal man . lol.......Welcome to the site. I would suggest that you absolutely see a Pulmonologist. They will give you complete range of tests to determine exactly where you stand. Click on the LEARN MORE tab at …

1 year ago

 Phenomenal Woman

Phenomenal Womanasked the question: New too emphysema

Hello everyone. I hope all is well! I'm a 43 old female that was diagnosed with emphysema a week ago. I was given a X-ray following CT scan. my primary physician Place me on an inhaler and that's it should I get a second opinion of the findings with a …

1 year ago

Caroline

CarolineSharing some of the peace and serenity of my evening walks.

1 year ago

barba

barba

Please let me know if you get this... first time trying to figure where to goin the group.

1 year ago

Jimmy S

Jimmy SIn times of emotional or physical hardship, it's easy to feel hopeless — but as the bible says, "with God all things are possible."
Loving God, I pray that you will comfort us in our suffering, lend skill to the hands of our healers, and bless the means used for our cure. Give us such confidence in the power of your grace, that even when we are afraid, we may put our whole trust in you.Lord Jesus Christ, by your patience in suffering you hallowed earthly pain and gave us the example of obedience to your Father's will. Be near us in our time of weakness and pain; sustain us by your grace, that our strength and courage may not fail; heal us according to your will; and help us always to believe that what happens to us here is of little account if you hold us in eternal life, my Lord and my God. Amen.🙏🙏

1 year ago

Mrs, Terry

Mrs, TerryWell I think I`m gonna be sore tomorrow..... I exercised, walked 15 minutes, sang and I`m pooped. Hoping all had a productive day..... If it didn`t go well tomorrow will be better.INto the bathtub and off to bed For me.

1 year ago

MM4

MM4

I guess this is my 1st post other than comments. I'm wondering if there's any other moms here still raising kids, maintaining a household, and all that fun stuff while managing copd? It's days like today that are going to do me in I think. Lol On the plus side, it keeps me plenty active. 😛My teen is starting his cross country season and I'm not sure how *I'm* going to do and I'm not running. Lol There's alot of walking, etc as a parent spectator. 😉This hot, humid TX summer has done me in and resulted in a new nebulizer at the end of June because my combivent inhaler was no longer doing the job. I'm also learning far fewer people really know what copd is, which has surprised me. 

1 year ago

joney

joney

Its been a great day nice weather here I watered a little outside enjoyed being outside😍

1 year ago

James Lippi RRT LPSGT

James Lippi RRT LPSGTcommented onE-cigs: How Did We Get Here AGAIN?

 The Lungs were never designed to inhale anything but the cleanest air possible and that has been proven on many levels for decades. We know that inhaling cigarette smoke causes Significant lung problems and cancers. We know that over exposure to...

1 year ago

Jimmy S

Jimmy SHope is being able to see that there is light despite all of the darkness.
While there’s life, there’s hope.

1 year ago

Jimmy S

Jimmy SGood Afternoon everyone. I am sorry i missed the morning but on Thursdays it my chance to scooter to Bible study, so i take advantage when the opportunity knocks. Once you choose hope, anything’s possible. So today: May your choices reflect your hopes, not your fears. Hope is being able to see that there is light despite all of the darkness. Try to remember this if nothing else. God has put some of the brightest, skilled doctor's and minds on this earth for a reason. Therefore how can we NOT have HOPE for a CURE one day. Patience is bitter, but its fruit is sweet. There is some good in this world, and it’s worth fighting for, one breath at a time.  Hope everyone is having a good day so far and is staying cool.  We are back into the low to upper 90's.😕

1 year ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

I have a visit with a Pulmonologist on September 3rd first time since being diagnosed. 

1 year ago

nana1975

nana1975

Has anyone out there had a "Sniff" test. 

1 year ago

puff the magic dragon

puff the magic dragon

1 year ago

Anonymous

Anonymous

Today has been very good regarding breathing thank you god for a good day. Manage house work with minimal fuss..also took dog for a 20 min walk.   Was feeling anxious so tried calling COPD nurse could not get them so ended up speaking to asthma nurse.
She was of the option not everyone progresses..which i challenged she said i could stay at this stage, again i challenged that.
Anyway has anyone tried slippery elm for acid reflux as i am worried about side effects of my omeprozole....antidepressant have made me so fluffy headed 

1 year ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question has anyone talked to their doctor re using Incruse and the fact that it is an anticholinergic med?

LFAOMGA both Anoro and Spiriva contain an anticholinergic. FYI LAMA means anticholinergic (sort of), where you see an inhaler described as a LAMA, it falls into that category of an anticholinergic .

1 year ago

puff the magic dragon

puff the magic dragon

land responded to your post ,was way done the thread so reposting here.It was regarding cutting patches i  half.Did a search and it turns out you cant cut them.Apparantley the dose comes out way to fast.Hope you see this before you do as you dont need trouble first day.

1 year ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question has anyone talked to their doctor re using Incruse and the fact that it is an anticholinergic med?

One thing I will do is avoid other anticholinergics like the various antihistamines, especially Benadryl.

1 year ago

muddleaged

muddleagedanswered the question has anyone talked to their doctor re using Incruse and the fact that it is an anticholinergic med?

I asked my Doctor about Spiriva, which is also an anticholinergic. I am concerned about the effects related to developing dementia. His thinking is that correlation does not guarantee causation. Also, if the med is working, do we want to mess with it? …

1 year ago

Mrs, Terry

Mrs, TerryYou, were in my thoughts and prayers last night. 

1 year ago

Mrs, Terry

Mrs, TerryA SHOUT OUT to all and especially the ex-smokers who decided to throw the poison cigs away!!! That was JULY. This is August. Imagine how much better September will be..... Hang in there, have faith in yourself and trust you can do this.
Today I start believing I can better my lot by getting off my butt. Moving,stretching, walking and overall putting more time strutting my shuffle than resting on my duffle. Lets all start the month doing at least 1 thing to improve our situation. We can, we will, we must!!!

1 year ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Big giant shout out for SCOTTY ROSS!!! Scotty- We miss you! If you are reading this, we hope that you are doing well! 💞

1 year ago

Jean IA State Captain

Jean IA State Captainanswered the question This is to give hope, at least to the ones who are in the age group of 30 to 40

Sorry you didn't find any answers when you first went looking, and you probably didn't from people who were as young as you are. However, there are lots of stories of us oldsters who have achieved some monumental results by quitting smoking, exercising, …

1 year ago

das23

das23answered the question has anyone talked to their doctor re using Incruse and the fact that it is an anticholinergic med?

When I get a period of time feeling pretty good I start thinking - maybe i don't need these meds anymore-maybe I'm not soooooo bad. In reality maybe it's the meds helping me feel good--ya think!!!!!! puff and Bill-thanks for posting--good reminder

1 year ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi

Good Mornin ya'll 
Well its August 1st
Woke up at 5:45 this mornin , why that early , only thing I can figure is anxious about not smoking.  So it's now 9:20 and haven't had a Smoke yet , also woke with a little bit of swelling in the ole ankles so popped the water pill , i must say with the little bit of swelling,  my ankles look good with that little extra weight on them.  So off to get me a bite to eat,  what IDK but im hungry. Maybe if i stop smoking , I will eat more and gain a bit if weigh ,  I do need it 104 to 106 doesn't look very good on me beings im 5 ft 71/2 inches and have lost all my muscle mass.  Have a Great day y'all. 

1 year ago

LFAOMGA

LFAOMGAanswered the question This is to give hope, at least to the ones who are in the age group of 30 to 40

Hi Grurav, congratulations, you took action to help yourself ! Some people get so scared about their situation that they forget they can actually help themselves. I’m glad you were proactive, now go out there and have a great life

1 year ago

Lovesacowboy

Lovesacowboy

I haven't been on in a while. My husband had his cancer surgery Friday at University of Michigan Ann Arbor, and we got home Tues night.  He is sore and fatigued but doing well. Now we have to wait on the pathology report.   That is one huge hospital with l-o-n-g hallways.  I had to do my breathing treatments first then get my oxygen on to go see him and back, then down to the cafeteria and back to the hospital hotel. Slow and steady. I think I should now try the mall after all that. Keep it going.  Still very winded (stage 3)  Tire easily and taking care of him.  So happy to have this group.  

1 year ago


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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.