Recent content by musclemania70

  1. M

    Celebrating 10 years of new life!

    OmyGosh Amber! CONGRATULATIONS and happy transplant anniversary!!! God is so good! I feel so much of your same emotions and I am sooooo thrilled for you. You have been a source of inspiration on here for so many people! thank you for contributing all your thoughts and advice! You are a...
  2. M

    Anyone else with fev1 @ 46%

    Get evaluated My reccomendation is to get evaluated for transplant. CF patients are waiting too long and doctors hesitate to refer them for transplant. All you need is one bad cold or pneumonia and you become too sick to get listed. I was in the forties when i first got evaluated but not bec...
  3. M

    Working with CF

    Congratulations! The coughing is going to give you away and people are going to start asking about it. I would tell your boss as soon as you are one-on-one so that they know what is going on. or you can wait until you need to go in the hospital for antbx because then it might be easier to...
  4. M

    Anyone on here with lung AND then Kidney tx?

    Please share if you have any experience w this.
  5. M

    stomach aches

    have you/she tried eating daily yogurt? I was having stomachaches constantly. I tested out 7 days of daily yogurt. Plain. organic. anything flavor with the good bacteria. EVERYDAY i eat yogurt like its part of my meds regimen and no more stomach aches. Reasearch KEFIR. its delicious and...
  6. M

    Possible recurring collapsed lung?

    Could also be a pneumonia. I had extreme pain on one side of my chest, had an xray in one hospital, nothing found. Had an xray a couple days later at another hospital and the experienced doc found pneumonia. Be sure you have several xrays with you so they can COMPARE. Some docs just assume when...
  7. M

    SSDI does anyone know Julie Raysbrook? from the dafcf?

    Autumn, thank you for your persistance in helping me get ahold of Julie. I emailed again at the address you gave me so hopefully she can give me just a moment of her time.
  8. M

    Trouble with Social Security & trying to get off disability

    Part of the problem lies in the local cf care centers. Every question i ask my social worker, no matter what the issue: health insurance, work related questions, life insurance questions, patient rights; the answer is always the same "call Beth Sufian". I believe these questions are being...
  9. M

    SSDI does anyone know Julie Raysbrook? from the dafcf?

    Did you check with julie to find out why she is not responding to her webdite email contact info? I am really desperate for HELP!
  10. M

    Coughing up small, hard, brown balls

    I got these even when i didn't have a fungal infection. Its 'normal' for CF. I was told it was pockets of dried mucous being expelled.
  11. M

    SSDI does anyone know Julie Raysbrook? from the dafcf?

    Can you pm me when your box is avail.? Do you know if the email i listed is still the correct one for her ? do you know if she has another personal email? did you hire an attorney to represent you? i sent in my appeal but need advice for doing the hearing. What advice did she give you?
  12. M

    SSDI does anyone know Julie Raysbrook? from the dafcf?

    can i ask you a few questions about your ssdi decision? (your private inbox is full!) i was using the email that is on her website: services@dafcf.org is that the correct email for her?
  13. M

    Excess IV supplies!

    I donated $500 worth to my local SPCA/humane society and they sent me a letter for a tax deduction. they will gladly accept supplies/NO meds
  14. M

    SSDI does anyone know Julie Raysbrook? from the dafcf?

    I was trying to ask her a few questions about Social Security but she has not replied to my emails for help. is her foundation still running?
  15. M

    Do YOU feel guilty for being sick?

    Just wondering if any one of YOU people (me included) feel guilty for being sick all the time? Like everyone else is supposed 'automatically' be understanding and bend over backwards to accomodate YOU. How many other people's lives have to revolve around US? OUR appts? OUR hospitalizations? OUR...
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