‘‘Twas the Night Before Christmas”

Posted by thumperguy @thumperguy, Dec 24, 2020

Not a creature was stirring not even a mouse. When all of a sudden there arose such a clamor I knew in a moment it must be St. Thumper. So steady the beat I was filled with confidence I had nothing to fear.
He went straight to his work and was soon on his way, but ere he went quiet I heard him declare “May the lungs be healthy and the airways clear.

Merry Christmas 2020 from Thumperguy

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@cmi

Here is my 2cents for the group...every living human beings has symptoms...can be as mild as a twitch of the eye (neurological), mild shake of the hand (tremors/neuro), clearing of the throat (gastro/allergic/structural), chest flutters (anxiety/cardiac/respiratory)...not one of us on this planet is free from our own human conditions. It is (in my opinion) a matter of scale...to what degree do these symptoms impact or change the whole system. As we, each of us, is linked (whether we believe or not) every body part and operation is dependent or affected by another...SO...how can it NOT be that when we are faced with any true organic issue (some diagnosis) our mental focus is hyper vigilant. Now, every ache pain swelling sound wrinkle stain fluid sensation and pain...logically must be “linked” our minds tell us....or must be collateral consequence to the other. Of course, sometimes these symptoms ARE direct results of another condition...but here is the trap of despair and hopelessness that can take hold of our senses.

As my wise Mother would repeat to me...the whinnying child...”focus and put your energy into fixing one problem at a time...you may see that some of the others will fade...”

I feel that surrounding oneself with true talent (medical) loving family & friends, and working diligently hard at preserving and caring for this shell of our human exterior...and very important...live with a mind of gratitude (for whatever)...helps keep the “monkey mind” of excessive worry...more quiet.

I wish every one of you a healthy and abundant 2021.
Regina

Jump to this post

@cmi so well said, and a mum with great common sence ! Thanks for that info. Heather

REPLY
@cmi

Here is my 2cents for the group...every living human beings has symptoms...can be as mild as a twitch of the eye (neurological), mild shake of the hand (tremors/neuro), clearing of the throat (gastro/allergic/structural), chest flutters (anxiety/cardiac/respiratory)...not one of us on this planet is free from our own human conditions. It is (in my opinion) a matter of scale...to what degree do these symptoms impact or change the whole system. As we, each of us, is linked (whether we believe or not) every body part and operation is dependent or affected by another...SO...how can it NOT be that when we are faced with any true organic issue (some diagnosis) our mental focus is hyper vigilant. Now, every ache pain swelling sound wrinkle stain fluid sensation and pain...logically must be “linked” our minds tell us....or must be collateral consequence to the other. Of course, sometimes these symptoms ARE direct results of another condition...but here is the trap of despair and hopelessness that can take hold of our senses.

As my wise Mother would repeat to me...the whinnying child...”focus and put your energy into fixing one problem at a time...you may see that some of the others will fade...”

I feel that surrounding oneself with true talent (medical) loving family & friends, and working diligently hard at preserving and caring for this shell of our human exterior...and very important...live with a mind of gratitude (for whatever)...helps keep the “monkey mind” of excessive worry...more quiet.

I wish every one of you a healthy and abundant 2021.
Regina

Jump to this post

Beautifully said, Regina. Thank you for these wise words. Living these words will keep me positive in our new year.
Happy, Healthy and Safe New Year to all!

REPLY
@jr2366

Kathy if you don't mind my questions what did you mean by clearing airway experience and I only do my nebuzier with arikayce medication once a day is what dr prescribed. oh geez so this is a possibility as well the no hearing too I'm happy to be alive and there's medication however I'm still feeling the pain in my lung hopefully the medication will take care of that soon I'm hoping do ;you think so?

Jump to this post

Jennifer, In your Post you mention Arikayce. I’ve noticed it mentioned on the forum before. I’ve also read this about it: “ The annual cost of therapy when Arikayce is used daily, as directed, is $132,495."Oct 1, 2018.

This is stunning. Hard to imagine an insurer going along without lots of kickin’ and screaming’. Don

REPLY
@thumperguy

Jennifer, In your Post you mention Arikayce. I’ve noticed it mentioned on the forum before. I’ve also read this about it: “ The annual cost of therapy when Arikayce is used daily, as directed, is $132,495."Oct 1, 2018.

This is stunning. Hard to imagine an insurer going along without lots of kickin’ and screaming’. Don

Jump to this post

Hi Don - Almost all prescription costs are stunning to me. Until I remember these are "List Price" - which in the case of big pharma has nothing to do with reality. There are all kinds of non-transparent moving parts.

For example, it is cheaper for Walgreens to dispense some of my meds to an uninsured person than to me as an Blue Cross/Medicare patient. The pharmacist explained that the price is agreed to between the "Pharmacy Benefit Manager" (PMB) employed by Blue Cross, following Medicare rules, and is actually set above the usual retail price for some generics. Under Walgreens corporate agreement with the PMB, he must charge me their price, not the cheaper one, or BC may delist Walgreens as a covered pharmacy. If I look at my explanation of benefits, I see the retail drug price, a much lower "allowed amount" and my copay.

Another wrinkle - for my neb solution, Walgreens charges differently for the identical med in Minnesota than in Texas, because they have a different PMB for the same nationwide policy! It is cheaper to order the Rx mailed from Texas than to drive 2 miles to get it. And our mail order pharmacy is under yet a different PMB, so each year I have to compare all the prices of our meds and decide where to fill each prescription.

To make new, high-cost meds affordable, the pharmas offer their own discount programs, often charging only a few dollars for new drugs, to get docs to prescribe them. Or if the artificially raise a price (Epi-Pens, insulin) they will offer "price supports" when the public screams loudly enough and legislatures start asking questions.

Finally, some docs are in the mix too, as "testers" or "sponsors" to get the drugs prescribed - and they get a stipend for it. In my clinic, docs have no fiscal incentive to prescribe the higher priced new drugs because their contract doesn't allow them to participate financially.

It's enough to make me run away screaming! And to think this is just one small piece of our medical system...
Sue

REPLY
@thumperguy

Jennifer, In your Post you mention Arikayce. I’ve noticed it mentioned on the forum before. I’ve also read this about it: “ The annual cost of therapy when Arikayce is used daily, as directed, is $132,495."Oct 1, 2018.

This is stunning. Hard to imagine an insurer going along without lots of kickin’ and screaming’. Don

Jump to this post

I know its so dam expensive imagine thankfully I have good coverage

REPLY
@jr2366

sue how are you how long have you been using the nebulizer? I have been on for 9 days I'm having a hard time with all of this but I know I have no choice just need some positive feed back from this all. your post did make me smile about your husband, and the bills hahah

Jump to this post

Jennifer, tell us if you can, more about the “hard time” you’re having. And trash the notion that you have no choice. Your choosing to battle the enemy that’s compromising your lung health. You’re behaving like a mature adult. None of us like to have things arise that interfere with our comfortable routine.

Stay active on this forum and you may be surprised by finding a diamond-in-the-rough. End of lecture. Don😉

REPLY
@sueinmn

Hi Don - Almost all prescription costs are stunning to me. Until I remember these are "List Price" - which in the case of big pharma has nothing to do with reality. There are all kinds of non-transparent moving parts.

For example, it is cheaper for Walgreens to dispense some of my meds to an uninsured person than to me as an Blue Cross/Medicare patient. The pharmacist explained that the price is agreed to between the "Pharmacy Benefit Manager" (PMB) employed by Blue Cross, following Medicare rules, and is actually set above the usual retail price for some generics. Under Walgreens corporate agreement with the PMB, he must charge me their price, not the cheaper one, or BC may delist Walgreens as a covered pharmacy. If I look at my explanation of benefits, I see the retail drug price, a much lower "allowed amount" and my copay.

Another wrinkle - for my neb solution, Walgreens charges differently for the identical med in Minnesota than in Texas, because they have a different PMB for the same nationwide policy! It is cheaper to order the Rx mailed from Texas than to drive 2 miles to get it. And our mail order pharmacy is under yet a different PMB, so each year I have to compare all the prices of our meds and decide where to fill each prescription.

To make new, high-cost meds affordable, the pharmas offer their own discount programs, often charging only a few dollars for new drugs, to get docs to prescribe them. Or if the artificially raise a price (Epi-Pens, insulin) they will offer "price supports" when the public screams loudly enough and legislatures start asking questions.

Finally, some docs are in the mix too, as "testers" or "sponsors" to get the drugs prescribed - and they get a stipend for it. In my clinic, docs have no fiscal incentive to prescribe the higher priced new drugs because their contract doesn't allow them to participate financially.

It's enough to make me run away screaming! And to think this is just one small piece of our medical system...
Sue

Jump to this post

I have really good prescription drug coverage through a pension plan. I have a copay rather than coinsurance so my part of the cost is always the same no matter where I get the drug. I am now in the catastrophic category under Medicare which means that my cost is even lower. This week, I picked up a prescription at Walgreens. The drug is inexpensive and I only needed 10. My copay was 60 CENTS! The pharmacy assistant at the drive thru window asked if she should put the charge on the credit card I have registered with them. I haven't paid with cash in so long that it took me a minute to remember that I have a small coin holder somewhere in my purse. 60 CENTS!

REPLY
@thumperguy

Jennifer, In your Post you mention Arikayce. I’ve noticed it mentioned on the forum before. I’ve also read this about it: “ The annual cost of therapy when Arikayce is used daily, as directed, is $132,495."Oct 1, 2018.

This is stunning. Hard to imagine an insurer going along without lots of kickin’ and screaming’. Don

Jump to this post

My insurance paid megabucks but my copay was only $50 per monthly shipment. Even with that low copay, the Arikayce people encouraged me to apply for their financial assistance program. I didn't apply but It must be generous.

REPLY
@rits

I have really good prescription drug coverage through a pension plan. I have a copay rather than coinsurance so my part of the cost is always the same no matter where I get the drug. I am now in the catastrophic category under Medicare which means that my cost is even lower. This week, I picked up a prescription at Walgreens. The drug is inexpensive and I only needed 10. My copay was 60 CENTS! The pharmacy assistant at the drive thru window asked if she should put the charge on the credit card I have registered with them. I haven't paid with cash in so long that it took me a minute to remember that I have a small coin holder somewhere in my purse. 60 CENTS!

Jump to this post

Yes, we are among the fortunate few to have insurance that continued into retirement as well - it has served us really well. A few years ago I switched to a plan with even better Rx coverage, and one of my husband's meds, which had a $135/mo copay is now $50 for 3 months. What a blessing not to be like many who have to choose between their meds and food or utilities - we are very grateful.
Sue

REPLY
@rits

My insurance paid megabucks but my copay was only $50 per monthly shipment. Even with that low copay, the Arikayce people encouraged me to apply for their financial assistance program. I didn't apply but It must be generous.

Jump to this post

@rits My copay for Arikayce was going to be close to 500$ per month. I did apply for their assistance program. I pay 0$ for the Arikayce. My monthly statement from Medicare has it listed as over 11,000$ per month which is covered by them and the assistance program. Otherwise, I could not do the Arikayce . Arikayce plus the Big 3 is making a difference little by little in treating my MAC one day at a time. irene5

REPLY
Please sign in or register to post a reply.