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Ladies, your discussion calls to mind another recent thread about how changes in the diet are affecting stools - rather than just focusing on enzyme dosages. http://forum.cysticfibrosis.com/threads/108515-Take-a-break-from-enzymes/page2?highlight=Diet+enzymes Momto2 had some interesting tips...

Hi Bookworm. I love your desk solution. I gather you store the vest attached to the hoses and connect/disconnect from the compressor as you use it, rather than connecting/disconnecting hoses from the vest? That way you don't need to figure out how to store the compressor with the hoses...

I don't think your link is working Olivia. You might want to repost.....

Wow Ethan. You have scouting and camping down to a science. That helps a lot. Really. I decided he should go camping but I really wanted an adult with him specifically who could help point out ways of doing things that would avoid particularly risky situations - like no swimming in rivers...

Good Morning Believing! I'm sure your thread has helped many overcome any reluctance to post, for whatever reason, and an appreciation of the worth to lending words of encouragement to others! We all need support, don't we! Thank you! Blessings. (P.S. Many, like me, may not see threads...

Please know, jpt, that your son is remembered. There is no consolation for the loss of a child, but time will replace some of the pain with all the wonderful memories. We mourn with you. I'm so sorry. Blessings.

The video appears here . . . https://www.youtube.com/watch?v=meam-XWx5d4 The current link is in another thread . . . .http://forum.cysticfibrosis.com/threads/124014-in-memory-of-my-son-and-in-honor-of-all

Are you finding that Zenpep is working better for you than Creon? I've often wondered about the differences which might warrant one prescription over the other.

Yes, Uncle Sam is going to take their cut. The amount of tax will depend on your total income. All income is reportable and potentially taxable - but you wont get a 1099 unless the income is $600 or more. Taxing income from clinical trials is something I believe should be eliminated. Wouldn't...

Yes AboveAll....Nice Job! Thanks for the reference.....here it is http://www.cff.org/mobile/aboutCFFoundation/NewsEvents/1-8-Clinical-Trial-Access.cfm?menu=0& I believe this still only addresses income exclusion for health care benefits and disability though - not exclusion from income.

Cam, check this closely first. I do not believe the first $2000 in income from clinical trials for orphan drugs is generally included in your income for purposes of determining your eligibility for SSI. Take a look at this link, and do check with the Social Security Administration - you can...

SaltyOne - Check your "General Settings"....there is an option to receive notices immediately, daily or weekly. I suspect that's where your settings are off. Blessings.

SaltyOne . . . To ensure you're getting any posts, be sure you're logged in, then go to the top of the thread (not the top of the page) under Thread Tools and click on it. There should be a submenu for Subscribe To This Thread. To ensure you get notifications of responses in other threads in...

MadMax - congratulations on finding your way to the Patient Assistance Center and getting to Sacramento to get your genetic testing done. We look forward to hearing the results. Hopefully that will get you some answers. I know travel is difficult for you, but if you go to a CF Center for...

Madmax, I am also having huge problems understanding why two elevated sweat tests did not result in a CF diagnosis - particularly given all your additional problems. Although the sweat test is the gold standard it's not apparently an automatic diagnosis - but close! Did the CF Center tell you...

I see your post too Suzanne! Stay with us! How interesting!

Hi CC. We've been in your position a lot. Generally the ENTs will wait to do surgery until you're tired of any discomfort or until it becomes necessary for other health reasons. Polyps do come back, sometimes within a month and sometimes not for years. It depends on the individual...

Great links AboveAll and CFMom. It's nice to see the light dawning in the CF/medical world. It seems a simple step to recognize that many carriers often have symptoms and that they are related to their CF genetics. I keep trying to convince my "non-cf" mother in laws pulmonologist to put her...

Hi Jazz. I'm lost.....is there a link or something missing from your post? What helped you that you don't recommend? And why don't you recommend it? LOL! MRSA cleaned out your sinuses?! How did you ever get rid of it?!

Jabug- the Guidelines I mentioned above with a link specifically refer to the sweat test as the "quantitative pilocarpine iontophoresis sweat chloride testing". That's the definitive test. That's the testing that was done by your CF Center and that's the testing that has to be done for a...