Saturday, March 26, 2011

New CF Resources

I am the type of person that needs to know ALL of my options before making a decision.  If I need scrapbook paper, I have to look at every single piece for sale before I pick the right piece for my project.  If I need new shoes, I have to look at every pair...sometimes in several different stores...before making a decision.  If we are trying to find a place to eat, I need to know every restaurant in the area before selecting a dining option (even when I am really hungry).  It's the same with CF.  I want to know about every treatment, medication, non-profit organization, book, fundraiser, forum, and website related to CF.  I just want all of the information available so I can:

 1. Be super educated on the disease and
 2. Know what is available to make good decisions about my health.

I just want to know all of my options.

Recently, I discovered a few new resources for people with CF.  My first reaction: how did I not know about these options before!?  Why didn't my doctors talk to me about this!? What else is out there that I don't know about!?  Just in case there is anyone else out there wanting to know all the options or to just be better educated, here are some of my discoveries.

1. First there is Quick Clean Micro-Stream Bags by Medela.  These bags are designed for cleaning breatspumps for nursing mothers.  But these also work great for disinfecting  nebulizer cups.  Pop your disassembled cup in the bag, along with 2 oz. of water and microwave for 3 minutes. Super easy and the bag can be reused up to 20 times.

2. Vitamins specifically for people with CF, by Source CF.  This is a multivitamin with high doses of A, B, D, E and K.  Now I am sure most doctors don't promote this vitamin because any regular multivitamin is beneficial.  I love these vitamins, however,  because they are soft gels and easier to swallow then the regular vitamins.  This is big for me.  I have trouble with swallowing those big pills sometimes. 


3. N-acetylcysteine (NAC).  NAC is associated with supporting a health immune system, good lung function, and has anti-inflammation properties.  These is no strong evidence to suggest that people with CF can benefit from NAC.  However, some people with CF take this medication and have shown benefit.  I found a product called PharmaNAC, an effervescent dietary supplement containing NAC.  This is available without a prescription.  I do not take NAC.  But I am going to talk to my doctor about it to see what her opinion is.  

4. I know someone that has a portable nebulizer.  Do I need to say anything else about how awesome it would be to own a portable nebulizer? 

***I am not a doctor, nor am I trained in the medical field in any way.  I am just one person with CF who wants to be educated and share information.  I am not suggesting or recommending any of these products.  Only your doctor can do that.***

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