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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...

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...

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...

Please share if you have any experience w this.

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...

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...

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.

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...

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!

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.

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?

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?

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

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?

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...

I do get a sudden stiffness in my shoulder for no reason- usually if i am sitting in a funny position. However, i think most cf patients have terrible posture from constantly hurling our bodies forward when we cough. Our backs and shoulders arch forward causing bad alignment and shoulder...

I love this site! thanks a lot people! you ROCK!

ps, people at the legal cf hotline never return phone calls - they are horrible at getting back to people so don't hold your breath, in the meantime file the extentions, ask for TIME to research your problem further.

this happened to me recently. appeal, appeal, appeal and ask for extentions. they have forms for this. i had to go back and forth with SSDI for YEARS before they finally just settled the debt for about 20% of what they originally told me i owed. and now i am paying a portion of the debt monthly...

Is it possible for a cf patient to obtain life insurance by buying it from a company (vs through an employer)?