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I just watched it, had it on DVR. I thought it was really great, touching, and I never realized how much he's done or the whole story. Of course I've known of him & his foundation. It was geared towards the general public so not too much detail on the actual disease, but enough. Though still...

Side effects as I recall, a little pain in the leg and at the site of arterial entry. My lungs felt kind of cold and a little restricted the next day or so. Otherwise I don't recall any extreme complications with my 6 BAE's. Oh by the way, I messed up my conversion. About 1/8 teaspoon of cayenne...

Ok, that's a considerable amount. Especially if it's happening frequently, like a few times per week. I'd suggest first looking into all the precautionary stuff. I take aquadeks twice daily, mephyton 5mg 2x/day, probiotics twice a day. The probiotics are supposed to help with vitamin K...

How big? In terms of volume or time the bleeding lasts? I've had 6 embolizations, we're trying not to do anymore. We tend to wait till it's really bad or frequent, like cups of blood in a day. Are you doing anything preventative for the bleeding? ADEK's, vitamin K, and probiotics were the first...

Thanks witch. I did get ahold of my social worker before the visit which helped me get a little perspective on what to expect. I was a little late in requesting advice, the thought of seeking advice didn't occur to me till the morning of the interview. Thanks for the hotline info, I forgot we...

I enrolled in my companies long term disability program about a year ago. After a certain period they send someone in person to evaluate my condition and whether I can work any job full time. I'm an engineer working part time now. I'm pretty nervous about this interview as I thought I'd be...

Thanks for the replies. So I typically do all treatments (HTS, vest, pulmo, tobi) not long before bed. Also do sinus rinses at least once per day, lately at night as well. It occurred last night again, it felt like it was in my left upper lobe mostly, so I don't think it's sinus related. Who...

I've only really noticed this getting bad in the past year. I get this swelling sensation like an itch in what feels like my mid trachea & behind my throat. It's irritating and makes me need to cough, sometimes a lot, some loose mucus comes out and sometimes it feels better for a few seconds or...

I've struggled with this balance over the years. I'm an engineer and had a pretty good paying job that I liked years ago, but at times I was working 13 hour days and through the weekends. I could tell by the end of the day my cough sounded worse, I felt crappier and was having more hemoptysis...

Male Age: 36 Years Old Weight: 130 lb. Height: 5 Foot 7 Inches

Azdesertrat: I don't recall Bob being that risque at the camp. He was a mature adult and I'm pretty sure could manage not to do an S&M act in front of kids. The Stenzel twins had camp with Bob as kids and loved him, they talk about him a little in their book Power of Two. Also as a CF man, my...

I've been looking into it too, can someone point us to why fizzy pharmaNAC is so superior to capsules? I don't quite understand why sealed capsules would oxidize more than fizzy tablets that you drop in water. I've tried both, probably more effect from the PharmaNAC but it's SO expensive. Like...

I also own it. Haven't watched in a while but I enjoyed it. Some of the graphic mutilation scenes were a bit rough to watch, but I thought he was funny and insightful and his actions and humor kind of taunted the disease and what it was doing to him. I also found it interesting to watch someone...

Why is there so little information on this? Even on their website there's little detail. Has it not started any human trial studies yet?

Considering you're on the transplant list, could you afford to not work for a while? Maybe try to get on disability? After your transplant you won't be able to work for at least a few months anyway. You could always volunteer if you need the mental stimulation, or some work from home type of job.

I use it every morning. Make sure you're using the mix packets (or I make my own), otherwise straight water will burn, have it be lukewarm water too. It may not be traveling through to the other side if one nostril is stuffed/blocked. If I have a blocked nostril, where I can't breathe through...

Is there a gym at your school? I find it helps me to have a routine and scheduled times when I go. Once I"m there I Have to exercise. I've struggled with this for years, it needs to be made a habit. and find something you like, or at least don't mind doing.

OTC vitamins are not the same as CF specific ones. The whole point is that ADE & K are fat-soluble vitamins which we don't absorb as well. The CF specific vitamins formulate them in a water-soluble form so we can absorb them better. It sucks that the softgels aren't available anymore, but he...

Question about NAC. I read a lot about stability issues with NAC in various forms due to air exposure and oxidation. Wouldn't NAC in capsule form be potentially more effective since it's enclosed in a capsule and not exposed to air? Pharmanac is so pricey compared to NAC capsules, don't quite...

I'm mostly vegan, occasionally dairy and fish might make it into a meal. It's gonna be tougher to keep weight on. Asian foods seem to be the easiest go to, they're usually veg friendly w/ lots of oil. I'll cook myself and use a lot of oil, nuts, rice, etc. It helps too if you live in a major...