Friday, September 12, 2008

looking up

Things are looking up. How can they not?
Not sure if I shared this already but Shawn recently came into possession if a Vest, for non-Cf'ers, it is an inflatable vest that simulates tiny coughs that move the mucus that is deep in the small airways of the lungs up and into the larger airways where it can hopefully be coughed up and out. In short it can be very beneficial. We had no idea just how good it could be.
Shawn has been using it faithfully for the last six days, he has had incredible results. He brings up good amounts of crap. Crap that NEVER moves. He has chest PT each day and that does NOTHING for him, NOTHING. He has had CPT for the last six months and nothing.

He had used the vest a couple of times at Mass General, but it was basically dragged into the room, he donned and adjusted the vest, the tech or whoever put it on one setting, one pressure and left him for 15 minutes. It was too tight, he couldn't breathe and was ready to puke. Needless to say he was discouraged by the experience.

It was only when I read a blog "noexcuses" by a fellow CF'er did I learn that there were specific settings etc. Another CF'er gave us the vest, we followed the reccomendations on Dr.Warwick's site and waalah.. Shawn is happy as a pig in shit!
He actually sees "something" happen as a result of a treatment.

This I'm sure doesn't sound like huge news, but it is for us.

Anything that helps him is big news for us.
He is encouraged, motivated and feels like he has some control. Something that HE does is actually helping. Also the fact that this is a result of a fellow CF'er and not a doctor is also huge.
He has actually joined the CF2chat website, and started his own CF blog. It's amazing, i am so proud of him.

He is finally engaging. Finally taking initiative. Finally he has hope.
I couldn't be happier.


Actually it has been all of the people on Cf2chat that have helped him get to where he is.

They have been our greatest support, and resource.

Maybe it is strange, although probably not too strange, but these people are my friends.
They are our friends and thank God for them.

So today is a good day!!!!!!!

Something interesting, I used to belong to another CF website, they were commercial, finacialy motivated and deleted the information that I preened from the NoExcuses blog.
Informational that has helped my husband.
Shame on them.


Piper said...

Tina, this is awesome news. Couldn't be happier for you and Shawn. Obviously every case is different, but I just wanted to add that my lung function has been as low as the mid-20s before and, with really aggressive airway clearance and abx treatment, came all the way back up into the mid-40s. CF is just tricky like that, so hopefully Shawn can regain some important ground now that he has the Vest!

Kim said...


I'm so thrilled for you and Shawn!! Having control, and even more than that, seeing some positive change is huge!!! You guys are both in my thoughts. Keep up the great work Shawn, kick some ass! Talk to you soon. xo, Kim

Anonymous said...

Wow, Tina and Shawn! This is such awesome news to read. You have both come a long way it seems from just a couple of weeks ago. I'm so happy to hear how well the vest is working for him. It can definitely be a struggle keeping up with everything as you 'should', but when you can actually feel the difference and feel a little more in control b/c of it -- it's so worth it.

Congrats on the new vest!

And welcome Shawn to cf2chat. :)


Jennifer said...

I feel that NoExcuses' blog on the subject of Warwick's vesting technique really helped me too. My hospital was about the same way- brought the vest in, set the clock, and that was it. The only thing I do differently, is since I can't seem to do the Warwick cough efficiently, I instead pause my vest at the 5 minute intervals, and use a flutter or acapella valve to force the secretions up. Works great. I definitely noticed an increase in mucus clearance with this vesting technique, compared to my old one, and even more so compared to chest PT.