Another Challenge.

[overlander63]

Good morning.
The move to a regular room did not happen last night. They're going to try again this morning. The reason given was there were no available rooms. I know they must be at a premium, because when Marie was moved to ICU, there was a person not-so-patiently waiting to clean the room for the next patient to occupy it.
No word on whether the delay in moving to a real room will also delay her discharge.

[Lily&Me]

Good to hear she’s improving, Terry.

Hugs to you both.

Maggie

[overlander63]

I thought I should post an update on Marie.
She was moved to a regular room, after four days in ICU, and was discharged two days after that. We got a surprise when they were having her walk down the hall before discharge, her o-2 levels dropped to less than 80. 95+ is considered "normal".

So, now in addition to being hooked up to a home dialysis machine every night, she is connected to an oxygen generator 24/7 That will make it a further challenge to do any travel, now that she has a large 120 volt machine she needs to be connected to all the time. She does have a couple of small tanks she can take with her, but total use time is around 6-7 hours. After that, she would need to be connected to the machine, which would also refill the tanks, one at a time.We're still working on that.
It was more than a few tense hours over the weekend, when hurricane Florence rolled through, and the power kept flickering on and off. I grabbed one of the generator in case the power stayed off for more than a couple of minutes, but it was not needed, after all. Chance does favor the prepared mind...
On a bright note, Marie now has a high-performance walker, with 4 wheels, independent brakes, seat, glove compartment, and handlebars. Almost like an off-road vehicle.
While things could obviously be better, they could also be worse.

[Lily&Me]

Thanks for the update, Terry.

Yes, things could be worse.

Glad she is home, and how fortunate she is to have your loving care.

Hugs to you both.

Maggie

[GCinSC2]

Terry

Wishing you guys the best.

Just keep those brakes adjusted for Marie.

Gary

[streaminwild]

Terry, Look into portable oxygen concentrators. The Lifechoice ActivOx Pro 4L weighs 4.8 lbs and has a 10 hr battery life. If you ever been smacked by a purse...you know they weigh more than 5lbs. I will always say the outdoors is the best mental- physical therapy around. Maybe we should name your trailer the ''silver suppository'' Just what the doctor ordered...camping! If you never been to Yosemite, plan a visit in the spring, that place will cure all ailments. OK, the ''silver pill'' does sound better.

[overlander63]

Originally Posted by streaminwild

Terry, Look into portable oxygen concentrators. The Lifechoice ActivOx Pro 4L weighs 4.8 lbs and has a 10 hr battery life. If you ever been smacked by a purse...you know they weigh more than 5lbs. I will always say the outdoors is the best mental- physical therapy around. Maybe we should name your trailer the ''silver suppository'' Just what the doctor ordered...camping! If you never been to Yosemite, plan a visit in the spring, that place will cure all ailments. OK, the ''silver pill'' does sound better.

Cost of the portable battery -powered unit is $2400. Insurance will cover about 80%.

[overlander63]

Originally Posted by streaminwild

Terry, Look into portable oxygen concentrators. The Lifechoice ActivOx Pro 4L weighs 4.8 lbs and has a 10 hr battery life. If you ever been smacked by a purse...you know they weigh more than 5lbs. I will always say the outdoors is the best mental- physical therapy around. Maybe we should name your trailer the ''silver suppository'' Just what the doctor ordered...camping! If you never been to Yosemite, plan a visit in the spring, that place will cure all ailments. OK, the ''silver pill'' does sound better.

Originally Posted by overlander63

Cost of the portable battery -powered unit is $2400. Insurance will cover about 80%.

So, after deciding to get one of these portable units, Marie called to set up purchase and delivery of one.

Imagine our surprise when the story did a 180, and now that we want one, Medicare won't pay for any of it. "It's $2499 plus taxes, will that be credit card, money order, or check?" What about the several places on your website where it plainly states it is covered by Medicare? "Oh, that is for other items on our website. Sorry for the inconvenience. How would you like to pay?"
Now, I've seen people that, though I hesitate to qualify them based on appearance, would probably have trouble paying that much for anything, sporting around with them. I wonder how those people were able to acquire them?
We're still researching, but it seems Medicare considers these things a luxury, not a necessity, so they won't cover any of the cost.
Okay, how about a spare portable oxygen tank, so we can take enough with us that Marie doesn't run out while we are going somewhere? "No, you only are allowed what you have. Thank you for calling".
Sigh...

[Lily&Me]

You might ask for those denials in writing, Terry, and about their appeal process.

If you haven’t made the request in writing, that should happen, and the same for all further communications.

I would also ask for policy citations, so that you can see exactly what the rules are, and talk with Marie’s doctor about any help they can give. Usually, policy citations are a part of written denials.

The doctor may be able to write a prescription or otherwise advocate.

Refusal of a second portable oxygen tank seems particularly questionable, given this relegates her to only brief respites from homebound care.

Sometimes those answering the phones consider themselves the financial gatekeepers, whose job is to first deny expenditures otherwise covered.

There may also be a medical social worker, or other liaison, at the hospital or clinic who can help.

Ask questions, starting with a written request and a denial as to reasons in writing, and file an appeal.

Good luck,

Maggie

[overlander63]

What we found:
Medicare will not pay for this device.
Medicare will not pay for additional tanks.
We were referred to the relevant portions of medicare's explanation of benefits page for confirmation.

It is illegal to sell medical equipment such as oxygen concentrators without a license, including your own used one--which is why I can't find used ones on Craigslist or Ebay. They are removed as soon as they are listed.

[garry]

As others have said get with the social worker at the hospital they work with the manufacture not the distributor.


You might post on Craigslist if anyone would like to donate one they no longer have a use for.

[overlander63]

Originally Posted by garry

As others have said get with the social worker at the hospital they work with the manufacture not the distributor.

Getting the hospital involved is a good idea. Of course, the office that handles that seems to be open mon-fri, so we'll have to wait until Monday to try that.

[Lily&Me]

I have a good friend with multiple medical issues and she has, with great perseverance, been able to get funding from various sources to help with needed medication and equipment that would have been a terrible financial burden for them.

The hospital social worker should be able to help link you, and we’re all rooting for Marie’s expanded life thru increased mobility.

Maggie

[Lily&Me]

My daughter is a medical social worker, and she has these suggestions...

If there is secondary insurance, they may pay for a second portable tank if Medicare has denied it

Medicaire would see the portable concentrator as frivolous and would not pay for it

Consider taking the home concentrator wherever you will have electricity

You can usually rent the portable, bag concentrator from a supply place, which might allow for weekends away without shouldering the full purchase expense.

Maggie

[overlander63]

Originally Posted by Lily&Me

My daughter is a medical social worker, and she has these suggestions...

If there is secondary insurance, they may pay for a second portable tank if Medicare has denied it

Medicaire would see the portable concentrator as frivolous and would not pay for it

Consider taking the home concentrator wherever you will have electricity

You can usually rent the portable, bag concentrator from a supply place, which might allow for weekends away without shouldering the full purchase expense.

Maggie

Thanks for the suggestions.
Marie talked to the social worker at the hospital, with the same result as everywhere else.

Secondary insurance will not cover the portable unit or additional tanks.

The "home" concentrator is 40x22x14, and weighs in at nearly 60 pounds. It will be "fun" to get into the trailer for transport, but doable, as long as I can make sure it is secured for transport. It has to remain vertical.
We now have a second portable, 3 hour tank. Don't ask me how this was accomplished... So, wherever we go, we need to be less than 6 hours' drive time away, including setup and hookup time.

I'm currently exploring alternatives to the $$$ one. One thing I have been doing is haunting Craigslist and the Marketplace area of Facebook. So far, I've found 3 portable units on Facebook for around $500, but in each case, they've been gone before I could do anything.
We'll keep on exploring alternatives.

[bweybright]

Can any of our friends to the north maybe help procure one there (not knowing if they are cheaper..but making a suggestion to consider) and drop it off on their way south snowbirding?

[streaminwild]

Originally Posted by bweybright

Can any of our friends to the north maybe help procure one there (not knowing if they are cheaper..but making a suggestion to consider) and drop it off on their way south snowbirding?

I love the way this community pulls together and finds a way around roadblocks. Try ''Onecraigs'' after exhausting all insurance options. We might have to go underground for this. Don't give up, We will find a way. Insurance companies have underestimated us determined Americans.

[ROBERTSUNRUS]

Originally Posted by overlander63

So, after deciding to get one of these portable units, Marie called to set up purchase and delivery of one.

Imagine our surprise when the story did a 180, and now that we want one, Medicare won't pay for any of it. "It's $2499 plus taxes, will that be credit card, money order, or check?" What about the several places on your website where it plainly states it is covered by Medicare? "Oh, that is for other items on our website. Sorry for the inconvenience. How would you like to pay?"
Now, I've seen people that, though I hesitate to qualify them based on appearance, would probably have trouble paying that much for anything, sporting around with them. I wonder how those people were able to acquire them?
We're still researching, but it seems Medicare considers these things a luxury, not a necessity, so they won't cover any of the cost.
Okay, how about a spare portable oxygen tank, so we can take enough with us that Marie doesn't run out while we are going somewhere? "No, you only are allowed what you have. Thank you for calling".
Sigh...

Hi, I sure hope that you are able to get whatever you need for Marie.

[Foiled Again]

Terry, years ago I had a friend with stage 5 metatastic breast cancer who had 10 children, four still at home, who wanted to take them on a tour of Virginia and Washington DC so they would have one last good memory. Her goal of surviving long enough to see the youngest graduate high school was slipping away. My sister and I managed to get her to Colonial Williamsburg for a week... and I posted Brenda's story here asking for anyone who lived near DC with some spare rooms or who would be able to driveway camp in their Airstream and make room... to help.

Happy endings abound.... I think the whole WDCU might have chipped in. Brenda's family ended up in a downtown luxury hotel suite for an incredible week. And Brenda's cancer slowed to a crawl. She watched her youngest graduate college lately. She still has cancer, and leftover effects from surgery, chemo and radiation, but it is now chronic rather than lethal. And newly diagnosed patients have a much brighter future as biologic drugs come on board.

I wish (and even hope) that Marie may make a big improvement and have a really good quality of life, even if it isn't 100%, but I am really aghast that Medicare won't even partly cover the portable oxygen generator, and that the co-pay for her dialysis is so high.

I KNOW YOUR MAILING LIST AND AM NOT AFRAID TO USE IT.

☻

[Foiled Again]

Correction: I know your SNAIL MAIL address and am not afraid to use it.

When auto correct doesn't screw me, failure to carefully proof read does.

Fat thumbs and a small keypad are un-indicted co-conspirators too....

Paula, just spreading the blame around [emoji35]