This & That

     This blog post is going to cover a lot of bases, but I'd like to start by sharing some very exciting CF news.  This month was the annual North American Cystic Fibrosis Conference - a national event is geared mostly for healthcare professionals and researchers to learn about the year's advances and discoveries in CF.  It takes a while for the actual press release summarizing the conference, but someone who was in attendance has shared that this year the average life expectancy for someone with CF has been raised from the mid 30's to 40-41!  This, to me, has always been just a number that I have never paid much attention to, but it is really exciting because it shows how much progress is being made.  When I was diagnosed in 1985 (at 5 years old) the life expectancy was 16-18 and in 2009 the age was the mid 30's, so new ground is being discovered.  The increase in life expectancy is greatly influenced by all of the new drugs on the market and there are even more on the horizon.  Most of the new ground-breaking medications are gene-specific, meaning that you have to have one or both of the CF genes that the drug was created for in order to be eligible.  While both Rachael and I have one very rare CF gene that hasn't gotten any attention, there are whispers in the CF community that a very large pharmaceutical company is finally looking into the gene and possibly testing a very promising drug for it.  I am forever skeptical of the pharmaceutical giants and their motives, but at the same time I feel grateful for their advances and hopeful about new developments.  Thanks to new research, medications, and treatments, being born today with CF is a completely different ballgame than being born in the 80's, which is why it is so important to spread awareness and shed light on the importance of CF research.  

     In the spirit of raising CF awareness, I would love it if anyone who chooses to participate in "Outrunning CF" on Thanksgiving would email me a picture at: mymelmoirs@gmail.com so I can share them here as well.  I registered today and it was super easy.  If you're interested, here's the link:  https://www.hugheswareregistrationservices.com/register_for_race/the-outrun-cf-gobble-wobble-virtual-run

     Wrapping up 'CF stuff' I just wanted to give a quick update that I am feeling much better and back to running 2 miles on the treadmill almost everyday.  I've had more energy this week than I have in years and am grateful for every ounce!  I am still on the antibiotics and prednisone and hoping that I can maintain this healthy feeling for a while after I finish them next week.  My CF doc made it clear that this is the last oral antibiotic course she'll give me until January, so now I just have to be careful not to catch any bad bugs/viruses.  I am also happy to report that Rachael is out of the hospital and doing IV's at home.  She is on the mend and feeling a little better each day.

     Moving on, you spoke and I listened.  I wish I had a dollar for every time someone tried to post a comment on my blog that mysteriously disappeared into cyberspace - that would buy me a lot of margaritas!  Apparently most of the problem stems from Apple devices (iPhones and iPads) but I have downloaded third-party comment application that should rectify the issue.  Hopefully now I will finally get to see all of your wonderful comments, but if not please let me know and I will try yet again.

     Last but certainly not least, Mark graduated his academy last night and I couldn't be any prouder of him!  He really put his nose to the books and studied his heart out the past 6 weeks.  He's always been a hard worker, but this was a different kind of work for him and it was nice to see him give it his all.  Meeting his Captains/training Officers, I can tell that he's already making good impressions...and I have to say that he looks damn handsome in a uniform!  It's a new chapter and together as a family we will make the most of it.  Here are I few pics from his graduation - congratulations my love!