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Thanks JRicci and Stephen. You have both helped me so much and I am so grateful. Stephen alerted me to the possibility of getting Kalydeco and because of him I've been on it for 2 years! Just recently Kalydeco was approved for 23 different Residual function mutations, including mine...

For anyone who has heard of the sudden decline of CF patients after getting a mild cold or flu, some to the extent that they are now on ventilator, I believe it is imperative to wear a disposable mask in public places such as the grocery store, mall or hospital during flu season. Who cares if...

Are these used in bronchoscopy?

Can anyone relate recent experience with working while on SSDI? Have you been audited by SSA as a result?

I really recommend first getting a job where you have private disability insurance and qualifying for those benefits before filing for SSDI. The average SSDI check ispossible as $1000 a month and so if you are not married or don't have family to support you it will be tough. Your lung function...

Maybe we should start a moveon.org petition to include more mutations such as yours, Stephen.

Also, when you get out of the ER, unless advised otherwise, keep doing your vest treatment 4 x a day. You also need to do exercises, such as yoga or the chest-twisting exercise in Pilates. Pilates does more for me than the Vest. I have nodules too but am in good health. Even before Kalydeco...

Hi there, Sorry you are so unwell. Rosie55 and CFMom have given you good advice. If possible get an outspoken friend to go with you to your doc visit. You should go to the ER immediately. Immediately. Do not wait. As an attorney who has worked in many different law firms, I have learned...

Here are the links: http://www.ncbi.nlm.nih.gov/pubmed/24520399 http://www.ncbi.nlm.nih.gov/pubmed/24598717

The NP at my clinic asked if I could help find articles for a patient with a rare gating mutation, that would support the patient's insurance appeal for Kalydeco off-label. I found the following 2 articles and sent her the following message highlighting the most helpful parts of the articles...

I have advanced, severe lung disease aka bronchietasis. My mutations are R117C and DeltaF508. Since starting Kalydeco off-label, I have had some significant changes. I started almost 2 months ago. 1. Sweat Chloride is now normal. They tested my sweat before and after kalydeco. It went from...

Stand with Bernie Sanders! It's time to scrap the cap and expand Social Security! At a time of massive wealth inequality, when 99% of all new income generated in this country goes to the top 1%, and when over half of the American people have less than $10,000 in savings, the last thing we...

Unfortunately I don't know anything. Your doctor would be the best person to ask. Good luck!

Victory! After taking Anthem to the CA Dept of Managed Health Medical Review Board, which reversed their denial of Kalydeco off-label, I have my first box of Kalydeco in my sticky little paws. I have to wait 2 weeks to take the first dose, to let the Rifampin clear out my system. Never...

The Social Security Disability System is not unsustainable. As the wealthiest nation in the world, we have the resources to fully fund it to improve the lives of all Americans. The same is true of our patchwork medical system. We have the resources to provide excellent medical care to all...

I believe I was born depressed. As an undiagnosed CF baby I am told I screamed nonstop for my first two years of life, due to burst ear drums, whooping cough and constant infections. I am on 150 mg of sertraline a day, and I think it just makes me feel normal. I have to watch my anger levels...

If you're not familiar with it, CF Roundtable is a great resource The latest issue has invaluable info about disability reviews - apparently they are now stepping up reviews of CF patients who also work part time. See Beth Sufian's column on this. http://www.cfroundtable.com/

Hey Believingjesus Check out http://www.socialsecurityworks.org/sanders/ which is a petition to expand SS benefits to make everyone pay SS on their full income. Right now people only pay on the first $117,000. Also, regarding the petition at...

As you may know, Republicans are using their new power in Congress to attack the disabled and cut our benefits by conjuring up a false crisis. If we do not act, disability benefits may be severely cut next year. Please sign the petition at the following link to let your member of Congress know...

CF can be depressing. But after many years of suffering with this disease I am strangely grateful to it. Without it I would be a harder, uglier and less compassionate person. Death casts not one but many shadows, but between them, the light is brighter.