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For everyone suffering from depression, low self-esteem, or just feeling like a burden, or, in my case, incredibly angry that a successful career has been put on hold by this ghastly illness, I highly recommend Kristin Neff's book Self-Compassion. This will stop the warring factions within and...

I asked my doctor about getting Kalydeco for my mutation - R117C and deltaF508 and she said she would look into compassionate use, they will discuss this at next appointment. Not sure what that means but I am hopeful. I really want to get better so I can get off disability and go back to work.

Are they looking at it for R117C?

If they love you, you will never be a burden, but a gift. This is where unconditional love comes in. Maybe some of the stuff you are going through is a pain in the ass, but that does not make you a burden. Life in general is a pain in the ass. You have to take the good with the bad and find...

Awesome idea! How did you research it?

I went to Stanford adult clinic in 2013. The awful Dr. Mohabir is still the director and the two dreadful nurse practitioners are both still there too, so I doubt anything has changed. I have a friend who also hated the weird and unhelpful attitude at Stanford and who also left in disgust...

Thanks ecsnut. I would like to have had a choice of vest, but in 2007 was prescribed the Hill-Rom after being diagnosed late in life at 30. Hill Rom rented my ins. co. the vest for 7 years, and only now just billed me for the balance of $9k, which Blue Shield is paying for, so I doubt I will...

R117C and FD508 Hi Gunelle and Smara I wanted to say thanks for sharing your experience with Fdelta508 and R117C. I have the same gene combo, and have no stomach or digestive issues but have severe lung disease. FEV1 is 41% of predicted, and I am 38. I just wanted to stay in touch so we...

Hi TamaraLynn Congratulations on your granddaughter! I agree with the other posters that your granddaughter needs to go somewhere close to where she lives. I used to live in Sacramento and went to UC Davis and was very happy with the care there. I have lived all over CA and have gone to UC...

Thanks, TreasureGoddess! I hope the new vest will work better for you!

Hi all Just wanted to share the benefit of the Minnesota Protocol - a stepped system of varying air pressure and frequency in a Vest device. This has been proven to improve mucus clearance. For me, the most important points are to make the air pressure as high as you can comfortably tolerate...

Hi all Just wanted to say I just got a new Hill Rom vest garment after my last one started leaking air, and what a difference! And not just in terms of the air leak being fixed. The fit is much better, even though it is the same size, as the old one had been so pulled and stretched due to 3-4...

Hi Hannah I would like to be your friend too. CF is really tough and every CFighter needs all the support they can get. I am 38 and still don't have it all figured out. It is easy to get discouraged, so surround yourself with genuinely supportive people. I no longer work full time and find...

I have had the same thing and it usually passes. It is old dried blood. If your doctor has never seen this before he or she is not very experienced, it would seem. Unlike the previous responder I do not recommend taking a break from your inhaled medications, they are essential for cleaning...

Hi everyone. I was wondering what people think about the current system of nebulizer cleaning - i.e washing the nebulizers in the dishwasher or by hand, and then sanitizing via a baby bottle steam sanitizer. Is there room for an improved product e.g. combined dishwasher and autoclave, or just a...