laurenac81
Member
- Joined
- Nov 8, 2010
- Messages
- 24
- Reason
- Friend was DX
- Country
- US
- State
- OK
- City
- Oklahoma City
The last time I posted here was in February. I am the one whose boyfriend's (John) mother (Janet) was diagnosed with ALS in August last year and moved in with us in October. Unfortunately things aren't going well for Janet. She still doesn't have Medicare coverage. Everytime would John call the social security office and they kept telling him that they show she has coverage, but they will have to wait for her Medicare card. John would call Medicare and would be given a claim# to give to those who are billing to Medicare. This number never worked.
After Janet's appointment in February she was brought a breathing machine to use when sleeping, however a few weeks ago John was told that they were still unable to bill Medicare for the machine and they may have to come take it back. John kicked it into high gear and called Social Security and was told that his mother basically doesn't have Medicare coverage and never has due to an error with some code and that she "fell through the cracks" and they would submit an urgent request to get this taken care of.
This past Thursday John went into the Social Security office and spoke with the Manager and was told that there was "Manager to Manager correspondence" going on and it could take another 30 days to resolve the issue. The same day Janet had another appointment with the ALS specialist and she has lost 25lbs since her last appointment, she is now 100lbs, and she needs a feeding tube as soon as possible as she could starve to death. I should also mention that Janet cannot eat soup anymore; so she is only eatingdrinking jello, applesauce, and ensure. Janet also had a respiratory test and John said that her FVC was -31. I don't know if this is possible. Perhaps those who are more familiar with this can shed some light on this for me. John said it was the same test she had back in October, which was exhaling into a machine for as long as she could, and the results then were an FVC of 25. I will never forget that at that time she wasn't even able to blow out birthday candles and to think that she is down to -31 is scary!
I just can't believe this is happening to her and I am disgusted by the system that allows her to "fall through the cracks." If she doesn't get coverage soon I am concerned that her breathing equipment will be taken from her and with no feeding tube she will pass too soon. This is not neccessary and I blame the Social Security/Medicare system.
I am sorry this is so long, but I have gotten a lot of good feedback from the people on this forum in the past and I am really interested in what you have to say about this situation.
Thank you,
Laurena
After Janet's appointment in February she was brought a breathing machine to use when sleeping, however a few weeks ago John was told that they were still unable to bill Medicare for the machine and they may have to come take it back. John kicked it into high gear and called Social Security and was told that his mother basically doesn't have Medicare coverage and never has due to an error with some code and that she "fell through the cracks" and they would submit an urgent request to get this taken care of.
This past Thursday John went into the Social Security office and spoke with the Manager and was told that there was "Manager to Manager correspondence" going on and it could take another 30 days to resolve the issue. The same day Janet had another appointment with the ALS specialist and she has lost 25lbs since her last appointment, she is now 100lbs, and she needs a feeding tube as soon as possible as she could starve to death. I should also mention that Janet cannot eat soup anymore; so she is only eatingdrinking jello, applesauce, and ensure. Janet also had a respiratory test and John said that her FVC was -31. I don't know if this is possible. Perhaps those who are more familiar with this can shed some light on this for me. John said it was the same test she had back in October, which was exhaling into a machine for as long as she could, and the results then were an FVC of 25. I will never forget that at that time she wasn't even able to blow out birthday candles and to think that she is down to -31 is scary!
I just can't believe this is happening to her and I am disgusted by the system that allows her to "fall through the cracks." If she doesn't get coverage soon I am concerned that her breathing equipment will be taken from her and with no feeding tube she will pass too soon. This is not neccessary and I blame the Social Security/Medicare system.
I am sorry this is so long, but I have gotten a lot of good feedback from the people on this forum in the past and I am really interested in what you have to say about this situation.
Thank you,
Laurena
