Happy Labor Day

Traditionally, Memorial Day marks the beginning of summer & Labor Day marks the end. It’s hard to wrap my head around the fact that it was just Memorial Day when Andrew’s health began to decline. And in one season- our lives have changed forever…

Here’s an update on the Rigid Bronchs:
Andrew will be receiving them weekly until his surgical team is satisfied that the build up in his airways is under control. Once the blood begins to flow systematically, the tissue will become more healthy and the airways will stop narrowing. Until that time, he will have to head to the operating room on Fridays for them to go in and manually clean them out. Please keep sending positive vibes for a speedy blood vessel and airway recovery!

In other news- he has officially graduated from Physical Therapy! His therapists feel confident that he can now exercise and train on his own! He’ll still be getting speech therapy to work with his aphasia, but he’s a free (ish) man in the gym! Woo!!

On an unrelated note: we’d like to ask that you all keep Andrew’s co-worker, and her family, in your thoughts and prayers. She was diagnosed with Leukemia earlier this year and has recently been moved to Hospice Care. She is a beautiful person with an incredible spirit and we are sending as much positivity and light to her as she sent to Andrew just a few months ago.

Xoxo,
Amber

With Great CF Comes Great Responsibility

Hello, again!  Happy Pollen’s-Everywhere-Don’t-Wear-White/Spring to you all!

We’ve gotten a lot of feedback from other members of the CF community applauding Andrew for all of the hard work he puts into staying on top of his treatments, physical therapy, etc.  Because of that I was inspired to take a moment and talk about compliance with medicine and treatments for CF.  And I guess really any disease, but I can only preach to one at a time… Please feel free to interpret according to your own needs!

I have heard many stories about Andrew’s wayward teenage days.  We were acquaintances after high school, but I don’t remember much about him.  Except for that decrepit straw cowboy hat…  Anyway, he was not such a great patient, once upon a time.  It’s hard to maintain all of the medicines and treatments when all you want to do is go outside and play with your friends.  He has 3 rounds of treatments each day, plus 3 sessions on his Physical Therapy Vest, plus making time to go work out at the gym which is actually a really important part of his routine.  He does, most of, this on a regular basis!  But that wasn’t always the case.

Admittedly, he slacked off a lot throughout high school and early college.  No one wants to say “No, bro, I can’t go longboarding in this awesome weather because I have to do like eighty-million treatments!”  But the truth is, not adhering to Doctor’s Orders can be more damaging than taking a wicked spill because you’re too awesome to wear knee pads in front of your friends.  It has taken him quite some time to get back on track from his adolescence, and he will tell you it was NOT worth it!  As your resident Queen of Nagging and Scheduling, it’s really not hard to get into a good routine!  You can absolutely get three rounds of treatments in, all the vest action your little heart desires, and some gym time while leaving personal time to, I don’t know, clean the house before your wife gets home? Or play Xbox… whatevs!

Andrew has finally found an awesome balance between compliance and still having a life! He gets all of his treatments done, all of his vest time in, and most of his gymming done WITH spare time to go outside and play with his friends.  Yes, sitting on a patio drinking pretentious craft beers counts as going outside and playing with your friends… when you’re 27!

 

xo,

Amber

 

PS – Feel like donating to a worthy cause?  Stroll on over to our Great Strides page and make a contribution!  KICK CF’S ASS!