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.)

4 months 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.4 months 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.4 months 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 …

4 months 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 …

4 months ago

Caroline

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

4 months ago

barba

barba

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

4 months 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.🙏🙏

4 months 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.

4 months 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. 

4 months ago

joney

joney

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

4 months 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...

4 months 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.

4 months 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.😕

4 months 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. 

4 months ago

nana1975

nana1975

Has anyone out there had a "Sniff" test. 

4 months ago

puff the magic dragon

puff the magic dragon

4 months 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 

4 months 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 .

4 months 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.

4 months 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.

4 months 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? …

4 months ago

Mrs, Terry

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

4 months 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!!!

4 months 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! 💞

4 months 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, …

4 months 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

4 months 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. 

4 months 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

4 months 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.  

4 months ago

Cynthiaziade8

Cynthiaziade8

Hello I'm new here and happy because I found this site. Last week my mother was diagnosed with  emphysematous lesion at the top of the right lung via a CT scan. But the doctor told her to stop smoking and everything will be okay and will not increase and did not ask for any other tests Does the ct scan determine the stage of the lesion? She has a shortness of breath and is very scared

4 months ago

puff the magic dragon

puff the magic dragon

Have a fantastic day everyone,little late but just got back from walk 1 skunk family of raccoons no turtles bill.
Had my eye appointment yesterday and pressure at 34 now so using brimonidine drops omg afraid to go to any more appointments and not buying a lotto ticket this week either😕👁

4 months ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good morning. Hope you are up and at it on this first day of August! For those of you who know who Punkie is...he was neutered on Tuesday. He is doing fine! When I went to pick him up, they called out Pumpkin Pie! Then they told me that Punkie was the vet's favorite. He was walking around holding my kitten! They put a heart next to his name on his certificate. ❤ That made me very happy and proud of my lil boy! Mommy bought him a soft green mouse toy with a feather tail to snuggle with when he got back home. Shelby was missing him all day. Animals sure do add alot of love into our lives! The happier we are, the healthier we are! Have a terrific day, friends! 😻

4 months ago

puff the magic dragon

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

That is great news,proof again that a lifestyle change can effect change fantastic grurav!!!

4 months ago

Grurav

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

I had a spirometer 4 months back and these were my stats: FVC: 105% FEV: 89% FEV/FVC: 69% Lung age: 33 (I’m 30) Did x rays and MRI and the gene test but none were conclusive. In fact they seemed to show no issues. Doctor asked me to just quit …

4 months ago

puff the magic dragon

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

yes bill l did exactly the same thing told my primary my reasoning and had the same results as you,seems all that stuff we injest on a daily basis adoes some good afterall.My biggest wish is that they will find a replacement for prednisone and all of its …

4 months ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question has anyone talked to their doctor re using Incruse and the fact that it is an anticholinergic med?

I stopped all medications in February, Statins, Maintenance Inhalers Including my Incruse and also anxiety meds, I was doing somewhat of a test trial to see what different outcomes if any? so the first 2 weeks I felt pretty good and maybe Great would be …

4 months ago

Jean IA State Captain

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

Choosing to take or not to take a medication is always a balancing act. Everything, whether over the counter or prescription, has side effects. Some we've been told for so long are good for us, we generally don't even think about it, and those of us who …

4 months 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?

I am guessing you are referring to the study that made the anticholinergic dementia connection. I still Incruse and Singular. No I haven’t discussed this with my doctor yet. I am not sure what to think. I like to breathe. I did some reading and neither …

4 months ago

K STEELE

K STEELEanswered the question When to Use Rescue Inhaler

Thanks for the info on harmonicas. I love to sing and will probably ask family for an harmonica for Christmas. Have a recorder I can practice on till then. Kaya

4 months ago

Ben A

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

I was on Incruse and Breo for a while before we recognized that my "prostate problems" were actually a side effect of Incruse (which was why none of the prostate meds helped the problem). The issue disappeared as soon as I quit using Incruse. Everyone …

4 months ago

hen

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

question regarding medication and possible side effects

4 months ago

Jimmy S

Jimmy S😎"Sometimes the most scenic roads in life are the detours you didn’t mean to take.” Success is what happens after you have survived all of your disappointments. Don’t try to be perfect. Just try to be better than you were yesterday. It is real easy for us to forget that we have a real illness that requires our attention 24/7. So if we slow down and focus on the things at hand and take one item at a time with one breath at a time we'll be amazed at the results. Start where you are. Use what you have. Do what you can.😎 I hope this finds everyone having a great Wednesday so

far.Strength does not come from physical capacity. It comes from an indomitable will.

4 months ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi answered the question When to Use Rescue Inhaler

Kristen Willard I would start out with less set of Ballon Blowing if your a Newbie to it and make sure the Balloons being used it 12in and Stretch them out first. I no longer have to Stretch them out.

4 months ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi answered the question When to Use Rescue Inhaler

Kristen Willard Tremendously I do 4 sets of 4 4 times aday and my breathing has improved dramatically. I have noticed in the time my inhaling and exhaling has increased in the amount seconds of air coming in and going out . My 02 stats are now at 98 to …

4 months ago

Kristen Willard

Kristen Willardanswered the question When to Use Rescue Inhaler

Here is the harmonica program you are talking about: https://www.copdfoundation.org/Learn-More/I-am-a-Person-with-COPD/Harmonicas-for-Health.aspx LandB55, do you notice that blowing up the balloons helps you?

4 months ago

Glenn T. Alexander

Glenn T. Alexander

Feeling much better Breathing good with energy return. I have an inhaler. I am sorry Folks for these panicky feeds. They come and go as you all know get to know me better.

4 months ago

nana1975

nana1975

I woke up very puffy this morning and have to go and get BP checked this morning, I look like a monster 😢 Does anyone have any quick fixes on how to make puffiness go away on my face?  Actually this is first time I woke up puffy since my diagnosis and put on meds and Oxygen.  

4 months ago

  • NewestOldestClick to View All Comments6 comment(s)
  • clipper (Debbie) - NJ State Captain My feet and ankles swelled up like balloons with Spiriva, my throat also closed up a bit which I didn't realize until I tried to eat. If you don't hear back from your doctor tonight, you might want to think about skipping it until you do. If you look up side effects, under less common it does list puffiness in the face, around the eyes, and lips as side effects.  4 months ago
  • nana1975clipper (Debbie)  I lost my spiriva the day before yesterday I mean it completely disappeared, so I haven't taken any for 2 days only using my advair and I haven't had any puffiness for 2 days, I wonder if this was my problem.   I can't renew my spiriva until the 23rd, but will ask my doctor if I should stay off of it.  4 months ago
  • clipper (Debbie) - NJ State Captain nana1975​ Sure sounds like it might be the source of the problem, especially since it is a known side effect. I would definitely tell your pulmonologist about this, they might want to try something else, there are options. 4 months ago
Anonymous

Anonymous

Hi and sorry i am in such a horriabke place i csnt think of nothomg other than my disease and my friend said my anxiety will kill me. I want to be part of my fsmikies life but dont want thrm to see me deteriorate 
I am making no sense at present not on oxygen although sats drop but come back up . Puffy climbjng stairs ...and on exsursion. I am not eating not skeeping . Antidepressant just space me out..nose a little congested. 

4 months ago

Glenn T. Alexander

Glenn T. Alexander

My ENT gave me the montelukast 10mg for allergies. and breathing. My nose gets blockedup when I go outside. I do not have a car. I need to call taxi's to go anywhere.l

4 months 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.