Saturday, August 27, 2011

CF = Big Words

It felt amazing to sleep 'til 11 a.m. today.  We needed to catch up on sleep after a whirlwind of a month -- a tougher than usual CF appointment, tons of traveling & losing Grandma B. 

Hubby had his 3-month appointment at the Vanderbilt Cystic Fibrosis clinic.  We were very pleased with his PFTs, as his FEV1 was 80%!  But, we learned that he has developed CF-related diabetes.  We will visit an endocrinologist in mid-September to find out what the next steps will be.

Also, we found out that he had previously cultured Mycobaterium Avium Complex (MAC).  This stopped us in our tracks simply because we had not heard of it.  The Dr. did not seem too concerned and will wait to see how the August culture comes back.  We're anxious for the results, but have been informed that it could take up to 6 weeks.  If MAC is still present, they will require dual antibiotic therapy.  Azithromycin is one of the common antibiotics prescribed to treat MAC.  However, this can be challenging, especially for CF patients, like my husband, who are already taking a prophylactic dose of this drug.  So, he was advised to stop taking it until we know more about MAC, to avoid the chance of becoming resistant.

Because Hubby travels so much for his job, they have switched out one of his meds, Tobramycin (TOBI), with Cayston.  TOBI normally takes him 30-40 minutes twice a day, whereas Cayston will only take 5 minutes three times a day.    Both are inhaled medications that fight Pseudomonas aeruginosa.  TOBI has worked great, as he has not cultured Pseudo in over 2 years.  Hoping & praying that Cayston will work just as well.

In case you may be unfamiliar with CF, here is the low-down...
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas, stopping natural enzymes from helping the body break down and absorb food.


  1. Love the new blog and being able to keep up with your journey. Praying for great results!

  2. welcome to the blogging world! at the first breathe of cayston my husband felt better (or so he said at the time). hopefully it works just as well for your hubby! :0)

  3. Praying and praying...Love you both!