Recent content by Blue

Johnboy, I'm not sure what reason you and your wife would need to be tested for at this point. You are both obviously carriers of a CF gene. Generally CF testing in parents is for the purpose of determining if you're carriers prior to conceiving. If you and your wife choose to conceive again...

I'm 30 and have been at the same CF clinic for the past 10 and was at another CF clinic for the previous 20. This past visit my doctors told me they needed to do my regular CT scan. Huh? Never had one of these before, but was told they have every CF patient having a CT scan every 3-5yrs...

@rmotion- Rinse the handset, put it in a baby bottle sterilizer and turn it on. This takes roughly 1 min and is the manufactures recommended way of cleaning.

My insurance covered the device at 20% after my deductible was met. And yes, you can use all meds in the eRapid. Another person asked about the eRapid base and I believe it's $860 before insurance. Google Cystic Fibrosis Pharmacy and check out their price list.

First off- If you haven't had your doctors call in a script for the eRapid to the CF Services Pharmacy, I'd recommend doing so! It's amazing ($135 per handset without insurance). It's silent, portable, battery operated and med time is cut in half!! If you're on Cayston already, then you won't...

Only twice in my life have I had issues with anxiety. This last time I went to acupuncture. During the acupuncture session, I could literally feel the tension leaving and my ability to take a deep breath return. I actually started crying, it was such a relief. I went weekly for 3 weeks and...

I've read a few posts where people say post transplant their lungs don't have CF. Even with new lungs, CF is genetic. Can someone help me understand what this means?

I had the same thing happen. I actually began developing open sores underneath the bandage that would appear to heal and then would be re-opened each week when the changed the bandaging. Near the end the pain was really extreme and I thought my actual picc line was infected. Once the...

I'm 30 and have never been given any specific warnings from my Dr's regarding the dentist or fillings.

The CF Pharmacy is the only licensed distributor of the eRapid. The actual cost is on their website. I believe it's $860 for the neubulizer and $135 for the eRapid handset, before insurance. If you use Cayston then you already have the nebulizer system! You will only need to purchase an eRapid...

So I came down with a serious cough. I decided to wait on calling my doctor because I was just sick 2 months ago and my doctors first response is ALWAYS to say they will be hospitalizing me after two weeks if I'm not back to baseline on oral antibiotics. I've only been in the hospital for CF...

I'm 30 and my FEV1 is 55% (2 kids later)

Our clinic (Boise) will be starting the third phase of DF508 trials which I hope, plan, pray to be a part of. Just wondering if anyone else has started and if they have noticed any improvements. If so, TELL TELL!!

I worked the CF Legal hotline (800-622-0385) to get disability benefits. If you qualify for disability (which they will help determine), there assistance getting disability benefits is free to you. It's great resource. Also look at cff.org for more programs and benefits and may also help with...

When I came home on IV's (with 2 little ones ages 3 and 1) I looked into a home health company that would come in and do cleaning (dishes, laundry, bathrooms, vacuum) and cooking. There is also a company called Full Circle (www.fullcircle.com) that delivers fresh veggies/fruits and even meats...