Wanda Squires
New member
- Joined
- Apr 29, 2008
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- New York
- City
- Bronx
Good Afternoon Everyone,
My Mother was diagnosed with CIDP in August 07 after months of doctor visits and hospitalizations.
She was suppose to have IVG Treatments once a month to start but because she did not have health insurance, and was turned down for medicade, she started receiving the treatment every 6-8 weeks. The treatments were working, so we thought because she was feeling stronger, her hands which started to curl was now straightening out.
Because of the situation with her and no health insurance her Doctor was afraid that the hospital would not admit her after her 3rd treatment because of the cost, and recommended that we find a trial study and get her in the study so that her treatment would be covered.
We called around to various clinical trials and John Hopkins told us that they were having a study soon and we should bring her for testing to be admited to the study.
Well they did the testing and diagnosed my Mother with ALS instead this March.
John Hospkins told us to take her home (she lives in South Carolina and we live in the New York/Connecticut area) and make her as comfortable as possible because she has only 3-6 months to live. I could not understand this especially since she was still walking and using her arms (though weak and needed help sometimes). But they told us that she will develope pneumonia due to swallowing problems, and it will go down hill from there. As predicted she developed pneumonia, had a feeding tube inserted all within a three week period.
Last week my Mother was placed on life support because she had difficulty breathing. She got a little stronger and was able to come off of life suppport but they gave her a trach, which she started using it 24 hours a day, now she is down to about 4 hours a day.
We also found out that during the time in which she was on support her Doctor gave her the IVG treatment, which usually kicks in after the 7th day. Is this normal treatment for ALS?
My sisters and I have only days to catch up on ways in which we can help her. The hospital wants to send her to a nursing home so that she can have rehab for the trach. The problem is that the nursing home is in Ohio, because they are telling me that South Carolina does not have any trach facilities and that they send all patients to Ohio. We are trying to get her up to New York so that she can be closer to us.
Is this normal for someone who is not expected to survive to be sent to a nursing home to learn how to eat and swallow again?
With that being said I am going down to South Carolina this week and I would like to know what questions I should ask.
Sorry to make this so long but I did not know how to shorten what we have been thru in the last 7 weeks.
Thank you for listening
Wanda
My Mother was diagnosed with CIDP in August 07 after months of doctor visits and hospitalizations.
She was suppose to have IVG Treatments once a month to start but because she did not have health insurance, and was turned down for medicade, she started receiving the treatment every 6-8 weeks. The treatments were working, so we thought because she was feeling stronger, her hands which started to curl was now straightening out.
Because of the situation with her and no health insurance her Doctor was afraid that the hospital would not admit her after her 3rd treatment because of the cost, and recommended that we find a trial study and get her in the study so that her treatment would be covered.
We called around to various clinical trials and John Hopkins told us that they were having a study soon and we should bring her for testing to be admited to the study.
Well they did the testing and diagnosed my Mother with ALS instead this March.
John Hospkins told us to take her home (she lives in South Carolina and we live in the New York/Connecticut area) and make her as comfortable as possible because she has only 3-6 months to live. I could not understand this especially since she was still walking and using her arms (though weak and needed help sometimes). But they told us that she will develope pneumonia due to swallowing problems, and it will go down hill from there. As predicted she developed pneumonia, had a feeding tube inserted all within a three week period.
Last week my Mother was placed on life support because she had difficulty breathing. She got a little stronger and was able to come off of life suppport but they gave her a trach, which she started using it 24 hours a day, now she is down to about 4 hours a day.
We also found out that during the time in which she was on support her Doctor gave her the IVG treatment, which usually kicks in after the 7th day. Is this normal treatment for ALS?
My sisters and I have only days to catch up on ways in which we can help her. The hospital wants to send her to a nursing home so that she can have rehab for the trach. The problem is that the nursing home is in Ohio, because they are telling me that South Carolina does not have any trach facilities and that they send all patients to Ohio. We are trying to get her up to New York so that she can be closer to us.
Is this normal for someone who is not expected to survive to be sent to a nursing home to learn how to eat and swallow again?
With that being said I am going down to South Carolina this week and I would like to know what questions I should ask.
Sorry to make this so long but I did not know how to shorten what we have been thru in the last 7 weeks.
Thank you for listening
Wanda
