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panguinjen

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Lost a loved one
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CA
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Stockton
Got a letter in the mail yesterday from the company that delivered Rog's BiPap machine in Jan. with some ultimatums that are frying my gizzards.

Rog has had problems with the mask they gave him as he feels he is drowning in his saliva at night. I told thr RT from this company about the issue and asked for a different mask. I was told that insurance will not allow him to try masks and to " do the best he could with the current mask". This occurred while Rog was getting his tube placed, then there was the trouble he had with the tube and ooze....Rog stopped using the machine because he was having panic attacks about drowning, school was insane for me, we've had two weddings and have been gone a lot. I let dealing with the BiPap slide except for encouraging Rog to use it sitting up while he eats. We leave for Europe on Tues. and Rog needs the machine on the plane.... Doctors notes have been written, airlines notified, cruise line notified, 15 million conversations have been had about coping with his ALS.
Then we get this letter (not dated) from the local office saying that we have to send the usage disc in to them within 5 business days and the usage had to show 4+ hours per 24 hr period 70% of the time. If it doesn't, we'll have to pay for the machine or give it back to them. Well, I checked our documentation they gave me, checked the documentation from the insurance company and nowhere did I find usage requirements; and needless to say we're not going to meet those requirements. Rog is worrying because he's afraid we're going to be on a plane and he won't be able to breathe.....(this is the rant)

Our case manager from the insurance company called today (this is the rave) to check in as she does every couple of weeks.... I explain the letter to her, explain we're not going to meet the requirements and why (she remembers a conversation we had about the mask and she suggested asking for another mask). She said don't send the disc as the letter isn't dated or signed (just stuck in an envelope with a bunch of "gotta do's" highlighted in yellow). She is going to deal with the local office and their illegal letter, get some masks to try when we get back, and raise some h311 with the higher ups of this national company. Woohoo, this woman is amazing!

This national company has been amazing except for our local office... The office has hung up on me, lost prescriptions, sent the wrong equipment out more than once and their RT is not a teacher... (here's your machine, plug it in and you're good to go....). Aaaarrrggghhh

Jen
 
So sorry, Jen. I know a little bit about insur ance com pan ies. I wish I could gnaw at their ankles. I'm glad your Al eer Nur se is a good one. We got stuck with one who called twice. I called the woman every Friday for 6 weeks, leaving messages. I finally speak to her and she closed my file. Because I never called her back?!?!
Have you started the pwc process yet?
 
Yes I have, the VA finally returned my call today and we're supposed to go see the q u a c k ( hes only interested in Rog's plumbing... Done a rec exam, ordered laxatives) when we get back. We got a delivery today (after I had the VA on the phone) of 7 handrails and a grab bar to put on the tub, still waiting for a toilet (the V A doesn't do bidets) and more handrails.... Gotten two different stories; one is to install them ourselves, the other was that the VA would do it....called to find out about the rest of the equipment and had to leave a message at the V A again...all this probably means the pwc will take a year....took 8+ months to get rated.
 
Well, you know mine has been over 7 months. I called B C / B S and the young guy said, hmmm I haven't a clue. And a 7 day wait. (I pray it doesn't have to go back for another 30 day review.) So now that makes 3 clueless people, me the B C guy and the young gal from D M E. My cla ims paper came with about 10 spe cial ty item pri ces and approval of one for 30 dollars or so. It has about 7,000 dollars of spe cial ty items. So, how much money do you think Dorothy can get with her new night gig dancing with a LITTLE bit of blue gingham fabric stra teg ic ally placed?

You need to check with other VA'ers to see how quickly they were able to get it and what hoops they had to go through to see it happen k Well, you know mine has been over 7 months. I called B C / B S and the young guy said, hmmm I haven't a clue. And a 7 day wait. (I pray it doesn't have to go back for another 30 day review.) So now that makes 3 clueless people: me, the B C guy and the young gal from D M E. My cla ims paper came with about 10 spe cial ty item pri ces and approval of one for 30 dollars or so. It has about 7,000 dollars of spe cial ty items and no numbers beside them to see why they weren't paying. So, how much money do you think Dorothy can get with her new night gig dancing with a LITTLE bit of blue gingham fabric stra teg ic ally placed?

Again, check with other VA'ers to see how quickly they were able to get it and what hoops they had to go through. In my past readings, the VA always seemed to be on the ball. I know Atsugi's wife was military and he may have been also. Check around, I hate when we peons get lost in the shuffle.

Good luck,

Toto
 
Jen, so sorry about the Bipap troubles. Sounds like that company needs to replace their RT.
 
Got a letter in the mail yesterday from the company that delivered Rog's BiPap machine in Jan. with some ultimatums that are frying my gizzards.

Rog has had problems with the mask they gave him as he feels he is drowning in his saliva at night. I told thr RT from this company about the issue and asked for a different mask. I was told that insurance will not allow him to try masks and to " do the best he could with the current mask". This occurred while Rog was getting his tube placed, then there was the trouble he had with the tube and ooze....Rog stopped using the machine because he was having panic attacks about drowning, school was insane for me, we've had two weddings and have been gone a lot. I let dealing with the BiPap slide except for encouraging Rog to use it sitting up while he eats. We leave for Europe on Tues. and Rog needs the machine on the plane.... Doctors notes have been written, airlines notified, cruise line notified, 15 million conversations have been had about coping with his ALS.
Then we get this letter (not dated) from the local office saying that we have to send the usage disc in to them within 5 business days and the usage had to show 4+ hours per 24 hr period 70% of the time. If it doesn't, we'll have to pay for the machine or give it back to them. Well, I checked our documentation they gave me, checked the documentation from the insurance company and nowhere did I find usage requirements; and needless to say we're not going to meet those requirements. Rog is worrying because he's afraid we're going to be on a plane and he won't be able to breathe.....(this is the rant)

Our case manager from the insurance company called today (this is the rave) to check in as she does every couple of weeks.... I explain the letter to her, explain we're not going to meet the requirements and why (she remembers a conversation we had about the mask and she suggested asking for another mask). She said don't send the disc as the letter isn't dated or signed (just stuck in an envelope with a bunch of "gotta do's" highlighted in yellow). She is going to deal with the local office and their illegal letter, get some masks to try when we get back, and raise some h311 with the higher ups of this national company. Woohoo, this woman is amazing!

This national company has been amazing except for our local office... The office has hung up on me, lost prescriptions, sent the wrong equipment out more than once and their RT is not a teacher... (here's your machine, plug it in and you're good to go....). Aaaarrrggghhh

Jen

If you are not satisfied with the service you are receiving you can change Medical Supplier and when I got my mask they brought more than one for me to try and of course they left them. Then I decided I wanted a nasal mask I now have three of them. The one I wear I like it I can talk on the phone, drink with it on. It has adjustable strap around my head and a band on top of my head. Very easy to wear
 
Wow this is bullcrap! They call every once in awhile just to check and see if it s ok, and one time we had to get the dr to write a letter stating, Bruce was using the Bipap, but that's all. Good luck...Stupid ins!
 
Thanks you for your ideas and support! Joni, the insurance company thinks the letter is illegal.... We think it's just the local office being incompetent... The VA out here has a backlog of cases because of the 100% rating and they are reorganizing ( or do I heard). I'll check past threads for tips to speed them along if they'll ever call me back.

Jen
 
Jen, I went to an MDA meeting the other night, and the guy on the breathing machine in the wheelchair said... "I NEVER take NO for an answer... if you think I'm going away and die, think again." BTW, this guy used to be an OT, and told our pulmonary doc the type of breathing machine he wanted, as he didn't want a trache yet, and he ended up getting it!

He gets the name of the person he's dealing with up front, and then if he doesn't get the right answer/info, he talks to their supervisor. He is not VA, but he even got his insurance company to put in the ceiling track for the lifts to the bathroom, etc. Took him for rejections and 6 months, but it was done.

I would change medical supply companies, AND write a letter of complaint to the main office. They're stupid, and incompetent. They're getting paid by the insurance, but YOU'RE the customer! whatever happened to customer service?

Of course you need to go on your wonderful trip first! Deal with these imbeciles when you get back. Oh, another thought is to call your state rep, it's amazing what can get done when someone from their office gets involved.
 
Helen, great ideas! I don't take no for an answer very often and only after exhausting all resources...I let the BiPap issue slide because I was up to my arse in alligators and something had to give... I am letting it alll rest until we get back, then I will tackle Ap ria and the local office; and the V A ... I need to have a bunch of things in place before school starts in August. I was just stunned by the callousness of their letter....

Jen
 
You need to go see the patient advocate at the VA. Just even mentioning that to the folks at prosthetics will get them moving at warp speed. You should be getting ALL equip from the VA, BiPap, cough assist and the Vest.
 
Lori is right. You should be working with the Paralyzed Veterans, or some other patient advocate. They should be fighting your VA battles for you. If they don't, go over their heads to the regional office of your service organization. My husband's progression was very, very fast. I didn't have time to wait, and we didn't. All of our equipment came from the VA in a very timely manner - most before he needed it.
 
Just ask the prosthetics people for the name and location if the hospitals patient advocate. We had been waiting 6 weeks for something to be approved, and before we even got to the office it was approved
 
Patient advocate is the key to what we need... Perfect! This is going to be awesome....

Jen
 
And, take some cookies to the prosthetics folks.
 
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