Medicare denials of extra supplies (Rosemary et al)

I was just reading in the Phoenix (United Ostomy Assoc of America) magazine that Medicare is routinely denying additional supplies for people, no matter the reason they need them. Rosemary mentioned this issue.

The UOAA is collecting examples of the hardship these denials have caused and then plans to take action negotiating w/Medicare. You can write them at [email protected].

Just wanted to pass on.....

Blue, I went to the site you mentioned and found the Advocacy strand. I clicked on it and it wanted all our personal contact info. Prior to this it gives a pfishing warning. Where does it have you mention the medicare restriction issue for supplies that we can respond to? Rosemary

OK Blue, I will look it up in my magazine too. I think I have a copy around here somewhere. Rosemary

I am a colostomy patient and needed more supplies a month. I went to my surgeon who wrote a script for what i needed. I then took his script to the medical company where my supplies are at. The company summited the script to Medicare and it was approved.... Dr's can move mountains for a patient.. And think twice about the elections in Nov people... I hope my post will help those that need supplies...

Also call the company who make your supplies they often times will help you in sending extra supplies. I irrigate so i use what is called a irrigation sleeve. The sleeve often times tear around the flange. To often... I call Hollister and report each tear and Hollister is more than willing to send out replacements. Please don't hesitate to call the manufactor for help... If you do not let them know of a defective product they cannot fix the problem...

meme1234

blue, i have also found it depends on who you talk to on what the outcome will be. If and i hate to but if i call Blue Cross Blue Shield the first person i speak to will tell me one thing and i hang up and call again speaking to another getting a different answer. I find the same with Medicare and Social Security Offices... I am really frightened what Congress, Senate and the President will do in 2012 to those of us that use medical supplies.. They don't have a clue....

Blondie,

So if the doc writes an actual RX script medicare will accept it v.s. a note of medical necessity?

Rosemary

Extra bags are a medical necessity.. i have learned over the last 5 years you have to speak up regardless who your speaking to if you think you are right. How many bags are you getting now a month?

Have been going through Byrams for 4+ years now and the lady with the answering machine sounds less than enthused with her job. I called Edge Park, explained the issue, and a real live person said as long as I had a doc's note they'd do what they could for me. So it's not like my doc didn't try. I don't know if the lady at Byrams is burned out or didn't get it or doesn't know what a peristomal burn is.....? But sure wasn't their usual good quality of service. Rosemary

I told my surgeon "why do i have to go through you to order anything? He agreed.. And if you think about it why should we have to ask anyone? I pay a lot of money for BCBS and 100 a month for Medicare and i have to get permission for supplies? I don't get a darn thing free however if i was a diabetic i would get a free pair of shoes every year... Not fair....

I am a gardner in the summer so the heat really effects my skin under the flange. Last summer my skin bled and i was unable to use a flange so i did what i never thought i would have to do..... i took a baggy and opened it up around my stoma then tapped the top of the baggy to my skin until my belly healed.... it worked.....

Blondie,

WOW! that was a good way to get the skin to heal that is under the flange. I totally get your strategy. With an ileostomy I don't think it would work as the output is so runny. Glad you could do that bit with the zip lock and the tape with your colostomy. Clever. Rosemary

Hi Blue,

Yes, I checked with my stoma nurse. She had me try convex and it did not work. Then she had me wear this tiny thin belt to hold the bag tighter to me. This kept slipping. I even tried a hernia belt though no hernia. I could not stand it. SOOOOOO I decided to lose weight. 10 lbs off and only 5 more to go. It is slow though because I cannot eat the veggies and all I used to. So stepped up activity and cut out sugar and junk. Thank God I still have a good metabolism.

I also found a good post from Dan I think who said don't touch the eakin seal a ton of times before putting it on. Just land it. He was right.

Also I have had improvement in NOT using the Stomahesive burn powder. That keeps the eakin from sitting directly on the burn which is what we want. I am already noticing a difference. THis is such a challenge. but I can notice a change with less of me in the way. I don't think I'll ever be as thin as I was but at 125 I was not getting the burns so that is my goal weight. I had been up to 140. Stoma was made with me at 99.

Thanks for suggestion. Rosemary

Blondie,

We all do find our way. A friend of mine tonight said he would go absolutely mad if he had to deal with all of this and could not just eat and drink and poop normally. He said I don't know how you do it. I said you do what you have to do.

I am in a REAL Catch 22. I think I told of the mashed potato blockage I had in 2009 and had to walk miles and drink a TON of hot tea for it to pass. I was on a ship in the middle of the Indian ocean when this happened. I remember an astonomer was helping people star gaze up on deck. I just kept walking past and past and past them. He finally invited me to join and I thanked him and said I had to do 30 laps around the ship before I could go to sleep. Thankfully the potato all shot out all at once and I could go to sleep.

So I have been mainly eating scrambled eggs, baby food meat, and bready crackery type stuff and lots of sugary soft stuff. So now I have a yeast infection (vaginal thank god not under the wafer not want it there). So I cleared this with diflucan and it came right back. So today I thought I will get on an anti yeast diet which is basically all protein and veggies. Like I really can't do a lot of veggies. So I bought a bunch of baby food carrot and green beans. AND I bought a NICE piece of salmon and poached it. It was soooooo tender. I cut it up fine and chewed, and chewed, and chewed. So far so good. Then I took my anti yeast pill for round #2.

No sooner did I finish all that chewing but i got a nerve pain from my beginning trigeminal neuralgia i was dx'd with this summer. it is a rare disorder where a blood vessel is right up against a branch of the trigeminal nerve and after many years the blood vessel rubs the coating off the nerve and you get an electric pain. so far my attacks have not been too often or too frequent but some people get severe pain as time goes on. The only real effective treatment is insertion of a surgical felt between the nerve and the blood vessel. Most people's blood vessel is not near the trigeminal nerve branch but some of us were just born that way and at a certain age it becomes problematic.

So that is not only a catch 22 but a catch 24! Rosemary

PS I am getting together with a chef to see how to make some sort of salmon paste like substance. But it sure did feel good to eat real food tonight. I usually just have breakfast of yogurt and rice cereal then an egg sandwich late in the after noon and then more rice cereal at night. That's why not so much energy. Most of my protein I get from milk sources which you are supposed to ease back on during a yeast diet. I got some of that Keifer liquid yogurt and the plain has very little sugar.

Post Edited (esoR) : 1/26/2012 7:34:01 PM (GMT-7)