Recent content by Gentrygirl

My son has CF, not me, so I can't say I am exactly in your shoes. I do see the pity party too, though, and I can empathize with how it must feel from your shoes. That being said, I've had my own journey with some other issues that I can somewhat equate it (worrying about the pity party) to, and...

Try a lone child's policy under BCBS of TN. That works great for our son. He has an individual policy that we pay for. It's $71.50 per month, $15 Co Pay, $1000 deductible, 80/20 coinsurance, and a $5000 out of pocket maximum each year. Go to TRH.com. You join Farm Bureau to get the discount...

I'll agree...this is her "normal", even though it is brand new to you. When my son was first diagnosed, we went to visit his cousins. At first they stared at his vest like he was an alien, and then he let them try it on, told them it felt like a massage. He takes it with him to sleepovers and...

Have you tried acupuncture? I was always afraid of it myself, but in giving it a try, I think it is relieving pain that I had grown so accustomed to I didn't realize i still had it. I've read it gives a lot of people relief from so many things. I'd say worth a try!

My son wouldn't take those capsules. Even though he's fine swallowing pills, we asked for the chewable version...much easier to take. On the capsules, i've heard of people freezing them so they can't taste them before they go down. A nurse at the CF center had mentioned that, but didn't mention...

My son has been pretty lucky. He's 16, has only been to the hospital for a broken arm from snowboarding. He stays really active, plays ultimate frisbee, skateboards, swims. His weight tends to be a challenge, at this point its mostly challenging because he's a teenager and keeps growing taller...

I had read some pieces on asthma patients having trouble with Essential Oils causing more swelling and irritation. I asked our docs their thoughts on that for CF. They answered its basically up to the individual if their body is irritated by the essential oils. I'd just be aware that it can...

My husband (no CF) had an Acoustic Neuroma, lots of nerve damage in other parts of his body because it lies on the brain stem. One problem that started was very sweaty hands. He discovered this device that helps (Drionic). Its basically a low voltage current that travels through water, and he...

?? My husband was a Marine, Force Recon. I thought with my son having CF, that he wouldn't be eligible to serve. That's not the case? Thank you for your service!(L)

My son is 16, stays over 100%, last visit was 127%! The RT joked and said he almost broke the machine. I agree with Bill, what mutation you have is going to play into it, and there's really nothing you can do about that. I think even with the same mutation, because people are different, each...

I would say that now, having the specific information about transplant, is the BEST time to start calling other transplant centers. He needs your strength to advocate for him. You may not get the answers you want, but you don't want to look back and regret not having called. Best of luck to you...

I invested (chose that word because it is a little more pricey) in the Venta Airwasher. It moistens that air, and traps dust and impurities as it runs. Hands down best purifier I've ever bought. We've got one in our CFer's room as well as our own.

There was another thread on this awhile back. The OP was removed, which is a shame, because he did an experiment and had interesting pictures with it. Even without the OP, I learned a lot from some other comments...

Bill, you always crack me up. Love it! Yeah, I'll jump on board here. I think he's being a little selfish- there are other people involved that he needs to consider. I think if both siblings were diagnosed with CF, and if all 3 kids are diagnosed with CF, the likelihood is high for him...