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long term survivors

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #42

    And yes that was $30 THOUSAND per month in America. Not ok

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    #43
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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #44

    Texting is fine. It's a little hard for me as my hands are arthritic.

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #45

    Dr.Patricia Shearer, pediatrician at Shands did a study a while back. Not to treat existing victims, but to adjust treatment for current victims to limit their latent effects. I was allowed to participate, but as the study officially only went back to 1970, my data wasn't included. As far as I know I was the longest survivor she researched. It gave me a HUGE amount of information. Unfortunately I haven't been able to get a treating physician to even LOOK at the information or LISTEN to me tell it. HOWEVER, the information and participation and Dr. Shearer help IMMENSELY in gaining my SSI benefits without having to share them with an attorney. The Social Security Office is also clueless as to latent effects and I had to educate them in order to win my case

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  • rhabdodino
    rhabdodino CSN Member Posts: 6 Member
    #46

    The aftercare ARNP that I went to at Golisano Children's Hospital was great. She usually works with kids that have just completed their treatments but was amazed and interested in my long term survival. She did so much research for me and compiled a great chart of body system long term issues to monitor for with labs and scans. I gave it to my primary and she glanced at it and put it in my chart. Never heard another word about it again. I keep up with what I should be having and ask for it now. Ridiculous that she couldn't even pretend to care. Ugh.

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  • Rinkydink
    Rinkydink CSN Member Posts: 14 Member
    #47

    Sounds exactly like what I've experienced. I wish that I could give all of you that have come after me more positive and promising feedback. But I prefer honesty even if it is brutal. Before my mom died ( from pancreatic cancer)we discussed that IF the doctors had been honest in the beginning, would she have chosen differently and what would I have chosen had I had asay in the matter. My answer was that I would have rather gone on to heaven an innocent child. Her answer was that she would have chosen to give me to Jesus rather than have me suffer and misunderstood for a lifetime.

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    #48
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    #49
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