IntenseDebate - Lauren B.

10 years ago @ http://ihavecfsowhat.b... - The Hope Roller Coaster · 0 replies · +1 points

I hope it gets approved soon! I can see this drug being so promising for younger kids without existing lung damage like me!

10 years ago @ http://ihavecfsowhat.b... - The Hope Roller Coaster · 0 replies · +1 points

Hi Steve,

I am eligible for Orkambi and started taking it about 2 weeks ago. It's hard to tell within the first 2 weeks whether it has had much of a drastic effect without doing PFTs. But the most immediate effects I have noticed is that my sinuses have cleared up completely, and they have always been pretty bad and stuffed up. The first few days, I coughed up a ton of stuff and now my mucus is a little thinner and easy to cough up. I'm not expecting a miracle, but I am definitely looking forward to some stability!

12 years ago @ http://ihavecfsowhat.b... - http://ihavecfsowhat.b... · 0 replies · +1 points

Hi Lisa! You can find me on facebook at https://www.facebook.com/laubomba555 or email me at lbombardier5@gmail.com

12 years ago @ http://ihavecfsowhat.b... - Beyond the Medicine · 0 replies · +1 points

Hi Lauren,

I have never had a g-tube, but when I was younger I struggled to gain weight as well and that was a possibility. Instead, I drank high protein ScandiShakes every day, has your daughter tried this?

13 years ago @ http://ihavecfsowhat.b... - Behind the Numbers · 0 replies · +1 points

Also, it isn't a state run system, we just have a more extensive state-run healthplan for low income families and individuals who wish to purchase it. I still have private insurance, just as everyone will under the federal plan

13 years ago @ http://ihavecfsowhat.b... - Behind the Numbers · 0 replies · +1 points

Hey John, it's my understanding that the new federal healthcare bill is based on the massachusetts bill. Basically we have to have insurance or we pay a tax penalty. What it has meant for our state is that the majority of people have coverage now, which means better access to healthcare. We also happen to have some of the largest and best hospitals in the country, so we can handle the influx of insured people. This may arguably be a problem for the rest of the country who is unprepared for all of these new covered people.

On the CF front, I haven't noticed any problems with access to care or being denied coverage. However we do pay very high premiums due to my illness, which is bound to happen regardless of the new healthcare plan. What is most important is that CFers aren't denied coverage based on a pre-existing condition, which the new healthcare law will eventually protect gradually in the next few years (now it only protects children from being denied). The new law will also prevent insurers from placing a lifetime cap on care which can be harmful to people like us who need expensive medical treatment.

13 years ago @ Run Sickboy Run - What a difference a ye... · 1 reply · +1 points

I agree that any numbers that stay consistent are good numbers! A whole year without a decrease in your baseline is a whole year of keeping up with your compliance to me! Its TOUGH to get your numbers to increase, so I'm always happy with consistent numbers, because if ya can't go up, you might as well stay the same. and if YOU feel healthy at your baseline, that's all that really matters!

13 years ago @ Run Sickboy Run - Update from the Hole -... · 1 reply · +1 points

Glad you're nipping it in the bud before it gets too bad! That's always my philosophy too!!

13 years ago @ Run Sickboy Run - My CysticLife \"Job\" · 1 reply · +1 points

I'd say you're making you goal! Cystic life has helped to connect so many people and give so many people (especially parents) hope!! You go Fibro!

13 years ago @ Run Sickboy Run - Treatment Time Support · 1 reply · +1 points

I agree Ronnie! Up until age 7, my dad was mainly the one who did Chest PT so yes, he was spending time with me. However, after that, I had the vest and I was always content just watching TV or whatever I did during my vest. Sometimes my parents would play a card game with me if they were around. But you're right, it matters what you say and do before and after treatments most, being there for support, etc. Doing my treatments without my parents close by taught me independence (but I was also sneaky and turned the timer ahead when Mom wasn't looking) Of course, you should trust your child to not "cheat" but I'm not going to lie and say I didn't! I'm not sure the newer version of the vest really has the option to cheat as much as the older ones did though!

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