Search results

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...

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

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...

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/

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...

Hi all Just spoke to my nurse practitioner who informed me that this season's flu vaccine did not work out too good. I checked the CDC website and it apparently only protects against 23% of the viruses out there. I am avoiding public places and shopping online to avoid getting infected at the...

This is an excerpt from dailykos.com. I am going to try and get a petition started on move on.org to stop this. This attempted cut on already low benefits shows how important it is to vote democratic or green party and to stay informed. Let's mobilize the CF community against this...

http://www.medicalnewstoday.com/releases/285437.php Canadians with cystic fibrosis are living almost 20 years longer than they did two decades ago. The median survival age was 49.7 years in 2012, up from 31.9 years in 1990, Dr. Anne Stephenson, a respirologist and research at St. Michael's...

Just wanted to share the highlights of this article for everyone like myself who has severe lung disease. It can be really hard to get off your butt and try to jog when your lungs are wheezing and you are coughing every 5 seconds, but a scientific study has been done which shows it is safe and...

I originally posted this in the mutations forum but was advised to re-post here. See original post for info on the research I have already found: http://forum.cysticfibrosis.com/threads/112049-Help-with-Prescription-for-Kalydeco-off-label?p=1005187#post1005187 If anyone could share any tips...

Could anyone share the peer-reviewed journals articles or other medical evidence they have used to persuade insurance to approve Kalydeco off-label, for residual function or other mutations? So far the best I have found is the Journal of Cystic Fibrosis - the slide from Van Goor, F et al. J...

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...

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 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...