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I love this one, and I am being quite sincere. Science Daily recently published a new treatment for gastritis and GERD using microscopic "motors" that swim around in the stomach, neutralizing excessive acid. I had a bathtub toy that could have been the genesis of the idea. I have very few early...

In my "cholesterol" days starting of course when the first statin drugs came available, my numbers were high and my triglycerides were off the charts. I was over 300 and spot checks approached 600. On Lipitor, the numbers improved and excepting triglycerides, LDL/HDL were way down. My doctor...

I'll try to answer what "works" about ivacaftor. CF is a genetic disease that compromises mucus cell's ability to balance the electrolytes, specifically chlorine or the chloride electrolyte ion in table salt. We are familiar with osmosis, the free transport of water through the cell membrane...

Last year was my first year on Medicare with supplemental insurance and prescription coverage from Anthem BCBS. My wife is a retired state employee and we buy our supplemental insurance through PERA. As usual, for us, we attended the meeting explaining the new version of insurance. It now...

A couple years back there was a lot of discussion on this CF topic, someone even coined "poopologists". I learned that any normal person can make changes that permanently ends constipation, but as soon as I feel like I have reached the perfect combination of diet, medication and lifestyle, it...

Interesting advancement in the delivery of drugs! I recently saw my CF specialist with a question about how drugs are delivered. The reason behind my question has to do with an amazing experience I had a year and a half ago. The medication I best tolerate for pain has several means of...

In 2014 most states implemented some form of Policy for Prescribing and Dispensing Opioids. (Opioids are Narcotics). The policy outline and related material was distributed at the 2013 National Governor's Conference and it has been cookie cuttered into most state's DORA or Department of...

mom2two, Thanks for giving me a new descriptive and a great big smile. "Joy and rupture" indeed. I pay as much attention to my gut as you spend time documenting and studying your lungs. My lungs are fine. I still contract pneumonia 2-4 times a year. As I understand it, CF lung infection...

JKJohnson, This topic comes up every now and then. A post a few months back was asking almost the same question. It's not been my experience to see people who are considering what to do to be judged by others. Then again I am a little bit Pollyanna-ish in thinking most people are good. This...

I'm not suffering from Wegener's disease and I have a feeling that you are unique. Wegener's occurs at the rate of ~15 people per million, CF occurs at the rate of ~1 person per 30,000, the likelihood of a person with both is like 1 in 100 million. Not to get carried away with statistics but...

WOW! Thanks for the cautionary tale. Too bad it came at such a price. I started to require occasional hospital stays in my late thirties. My wife and I made a kit of various things that I might need on the way to the hospital and the stay. I refuse to be a patient patient and the time lag...

In the pre-diagnosis years, I relied on a good PCP. I was his only CF patient for 15 years. Finally 2 additional CFer's found him. As much as anything, he was that Doctor who had no problems working with other doctors. We learned about CF together. As soon as a specialist would arrive at a...

A good clinic is relative. I've been going to a CFF accredited clinic for about 15 years and have been helped. As a late diagnosed CFer, I had a number of specialists treating my needs. As I understand it, my clinic has expanded its staff. For pulmonary dominant CF, the clinic draws adults...

Excellent choice of promising research avenues. A general rule in fast tracking drug development is to improve on an existing product. Orkambi is just such a drug, Kalydeco+a CFTR moderator. In the article, new work with inhaled gene therapy and a better animal model build on a logical...

Molly, Welcome to CF.com and thank you for the story. I too would like to hear about others like you and your struggles with pain management. It strikes me that most CFers are dealing with some level of chronic pain. It comes as no surprise that 9 out 10 visits to a PCP are about pain in the...

I have a great answer, straight from a CFTR genetics analytical scientist at Ambry Genetics. "Thanks LL for a good background and update for many. Just to clarify about the 5T polymorphism issue. Everyone carries a certain number of T's that are strung together in intron 8 of the CFTR gene...

SunnyLon, Pseudomonous what? The number of bacterial species and sub species within the Genus Pseudomonous is pretty high and just a few would be a concern for a CFer. If you are having a clipping analyzed you will be in the clear or have a problem. The highest risk is your footwear...

Thanks. This is potentially good news. The amount of PEG, MiraLax's active ingredient, I absorb is either high or my kidneys don't like it. When I have to dose daily for more than 3-4 days, it's a toss up between dying from constipation or kidney pain. Double dosing MiraLax hasn't been...

It certainly sounds like a pancreatic attack. If you look at the anatomy of the bile duct system you will see that bile is produced as a liver waste product and increasingly larger ducts finally reach a size that are typically illustrated with the gallbladder. Pain from the pancreas and pain...

SooB, I don't think I can add anything to the when and how you might tell your kids. The previous contributors have answered well. On another topic a contributor recently asked why there were so many old CFers on the site. This is a question I have pondered and at some level, researched...