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Thread: Requestion info/support for a friend

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    Default Requestion info/support for a friend

    Hello to everyone ....from Las Vegas. I work with a woman named Sandra. Her daughter Nicole is 28 years old and has lupus. I do not really know Nicole too well, she has been homebound and her mother takes care of her and Nicole's children (2 under 10 and one 12). Two weeks ago, Nicole became very, very ill and was rushed to emergency. She has been in ICU ever since. She has had 4 platelet transfusions (that might not be the right term but hopefully you know what I mean - the count was 11), she is on a ventilator now, and now has kidney and some heart problems. It seems to me that the Doctors are not really sure and from what I have been reading, I can see that Lupus is very, very complex and affects everyone differently so I am trying to get some informationa and support for the mom. She was also very swollen and they did exploratory surgery. The mother is running on empty, she has taken one shower in 2 weeks and is at the hospital non-stop - the great- grandmother has taken the kids & the doctor says that even if she comes out of this, it is only 10% of the problem.

    There is not a Lupus support chapter in Las Vegas. Does anyone have any suggestions as to where I could obtain some moral support for the mom. She is not thinking clearly and the Doctors keep wanting to perform more andmore procedures. SHe tries to reason it out but as you know, many people are intimidated by Doctors and since they are so busy, you only get blocks of 5 or 10 minutes with them so she needs to be prepared, I call her constantly since I know she is all alone and I am hoping that some of you can direct me further. Also, is there any financial support available? The Mom is behind in everything and I know this is weighing heavily on her mind.

    I told Sandra that I was going to see if I could get someone to talk to her that knows about Lupus and it's complications and she said that would be so much appreciated.

    Since she is at the hospital right now, you can write to me at chelliesee@hotmail.com and I would sort of become the go between to give out and receive phone numbers.

    Thanks for any assistance/referrals

    PS- I was really amazed reading some of these posts - God Bless you all.

    Chellie

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Chellie;

    I found the following Lupus support group in Las Vegas. I do not know how active it is, but here is the information:

    Las Vegas Nevada Lupus Support Group;
    They meet monthly from 6:00 pm until 8:00 pm. The days of the week change so it is recommended that you contact them to find out when the next monthly meeting will be.
    LOCATION:
    Las Vegas Library
    833 Las Vegas Blvd., North
    Las Vegas, NV 89101

    Your Meeting Host: Michelle E. Stewart - mstewart@reviewjournal.com
    Please email Michelle if you will be attending a meeting.

    Please tell your friend's mom that she can come here at anytime to ask any question or to get information or for just some support. Also, she can e-mail me personally (Saysusie@cs.com) and I will do everything that I can to help her through this difficult time.

    Unfortunately, there is not much, in the way of financial support, available for the families of Lupus patients. I would suggest that she contact the State Department of Insurance for information on health or life insurance coverage in the Nevada to see what she (or her daughter) may be eligible for. Contact information for U.S. State Departments of Insurance is available at: http://www.naic.org/state_web_map.htm.
    Also, she might want to contact the nearest Lupus Foundation of America Chapter, they may be able to assist her in locating local resources. She can also can contact the county Department of Social Services to find out about available services in Las Vegas.

    The U.S. Federal Government has three web portals to help individuals identify federal programs for which they may be eligible.
    www.govbenefits.gov
    www.govloans.gov
    www.grants.gov
    If she is having difficulty paying for medications to treat her daughter's lupus, there may be assistance available through the Pharmaceutical Researchers and Manufacturers Association (PhRMA). PhRMA sponsors a program that provides prescription medications free to physicians whose patients might not otherwise have access to necessary medications. The Directory of Prescription Drug Patient Assistance Programs lists member companies of PhRMA that participate, medications covered, and eligibility criteria. If she meets the criteria, the pharmaceutical company will send the medication to her daughter's doctor, who will dispense it to her daughter. Further information is available at the PhRMA web page: The Directory of Prescription Drug Patient Assistance Programs. Suggest that she talk to her daughter's physician to determine if she is eligible to access any medications through this program.
    You are doing such a wonderful thing for her and her daughter. They are both lucky to have you in their lives. Please let her know that there are so many others, in this family, who will be willing to help her in any way that they can.
    Please let us know if you need anything else and let us know how she and her daughter are doing.

    Peace and Blessings
    Saysusie

    The Together Rx Access™ Card was created as a public service by a group of some of the world's largest pharmaceutical companies, in order to provide savings on prescriptions to eligible residents of the US and Puerto Rico who have no prescription drug coverage. The eligiblity requirements are as follows:
    A legal resident of the United States or Puerto Rico
    Not eligible for Medicare.
    Have no prescription drug coverage of any kind.
    Household income is equal to or less than:
    - $30,000 for a single person
    - $40,000 for a family of two
    - $50,000 for a family of three
    - $60,000 for a family of four
    - $70,000 for a family of five
    Families of six or more and residents of Alaska
    and Hawaii should contact the Together Rx Access Program at 1-800-444-4106 or click here to
    determine eligibility.

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    Susie,

    Thanks so much for the info - I printed it out to give to her and I am going to get in touch with all the valuable resources you provided.

    I am also giving her your e-mail and the addy of the group forum- I know that once they are both home, they will certainly join the forum.

    Thanks again for the info. It is so nice that you took the time to research all the info. (and I thought I was good on the internet . Your help is VERY MUCH appreciated.

    Chellie

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    Saysusie's Avatar
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    You are very welcome! That is why we are here :lol:

    Peace and Blessings
    Saysusie

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