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  1. Thread: Primary Care Dr

    by Jane
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    1,585

    Primary Care Dr

    Still trying to help Josh figure out what insurance to choose.

    For the adults, is your pulmonary doctor your primary care physician? If so, who treats your non- cf medical needs?
  2. Thread: Mass Health help

    by Jane
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    1,196

    Mass Health help

    Josh will be 26 in a few weeks and will age out of my insurance. He is currently on MassHealth as a supplement, but he will have to choose a primary through MassHealth. Are there any MA residents who...
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    I agree and am grateful for the resources and...

    I agree and am grateful for the resources and support this community provides. Thank you all and to Jeanne for all your work on our behalf. You are making a difference.
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    It is such wonderful news!

    It is such wonderful news!
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    Thank you Jeanne!

    Thank you Jeanne!
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    That is so great! Was this the case Beth Sufian...

    That is so great! Was this the case Beth Sufian was working on?
  7. Your daughter's friend is so blessed to have your...

    Your daughter's friend is so blessed to have your support. End stage CF is so overwhelming for the patient and the caregivers. It sounds like he is depressed and defeated which makes sense....
  8. Thread: Seasons Blessings

    by Jane
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    Thank you Jeanne. I hope you and Peter have a...

    Thank you Jeanne. I hope you and Peter have a wonderful Christmas with your family.
    Sending love.
  9. Heather, I am so sorry for your loss. My family...

    Heather, I am so sorry for your loss.
    My family is going through a similar situation. My 19 year old son passed in May while on ECMO waiting for new lungs. My older son (23 with CF) was in great...
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    I think of dear Mel every day. By sharing...

    I think of dear Mel every day. By sharing herself, she gave us all a wonderful gift. Her 40th birthday celebration was indeed jubilant- the rose is still on my mirror to remind me.
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    Janelle, the dressing kit is Med Stream Dressing...

    Janelle, the dressing kit is Med Stream Dressing Change Tray MSDC-014702 if you want to look it up.
    We used it for both ports and PICC changes.
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    Excess IV supplies!

    We have so many extra IV supplies. If anyone could use them, we'd be happy to send them out.
    The boys haven't touched them- most of them are in the bags from the home care company. Here's a list:
    ...
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    Me too! Thank you Jeanne!

    Me too! Thank you Jeanne!
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    Thank you Jeanne, I love it too.

    Thank you Jeanne, I love it too.
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    PM me with your address and Ill send it out!

    PM me with your address and Ill send it out!
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    Health journal book

    I have a new 3-ring binder style health journal if someone can use it. It was created by a CF mom to keep her daughter's appointments and medical records sorted.
    ...
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    Wow Tonya, that is so scary. I hope by now the...

    Wow Tonya, that is so scary. I hope by now the doctor has taken him off and his behavior is improving.
    My boys never had any of these symptoms so I can't comment from experience, but I'm thinking...
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    patients are denied Kalydeco and sue

    Wall Street Journal

    http://online.wsj.com/articles/costly-drug-vertex-is-denied-and-medicaid-patients-sue-1405564205
  19. Thank you for sharing this Jeanne.

    Thank you for sharing this Jeanne.
  20. Thread: Jesse <3

    by Jane
    Replies
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    1,387

    Jesse

    For those who haven't heard our sad news, our beloved younger son Jesse passed away on May 13th. He had been in the ICU at Boston Children's Hospital since April 11th where he was waiting for a...
  21. Thread: Cleveland Clinic?

    by Jane
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    4,523

    good advice! Thanks

    good advice! Thanks
  22. Thread: Cleveland Clinic?

    by Jane
    Replies
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    4,523

    Thank you Jeanne for your kindness and support.

    Thank you Jeanne for your kindness and support.
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    Thanks Liza! Yes that is helpful. I want to look...

    Thanks Liza! Yes that is helpful. I want to look into liquid O2. Our home therapy doesn't carry it.

    Yes, he is not used to having the oxygen all the time. Both anger and frustration, as you said.
  24. Someone on another forum recommended cheated...

    Someone on another forum recommended cheated magnesium:
    http://www.cf2chat.com/e107/e107_plugins/forum/forum_viewtopic.php?41853.0

    Also in this thread is the herbal haritaki. ...
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    Home oxygen concentrator- SO LOUD!

    Wow, Jesse just got a new 10L concentrator from our home care company and it is so loud! We had to put the beast in the living room so he could sleep! It is the Invicare Platinum 10.
    Does anyone...
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