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I lost a few pounds recently during a round of IV's and am definitely underweight for a dude. 5'7" and 122 Lbs. I gained a few back in the last month or so. I have a tough time b/c I'm trying to eat healthy too, and I'm vegetarian. But big meals, add extra oil when cooking, think calorically for...

Agreed on keefer's points. I've had MRSA several years now and have noticed the cough is a bit different. Are you sure it's dry and isn't just super deep and hard to cough up? I wondered since you said you were pretty healthy beforehand, maybe you're not as practiced in the different ways of...

Hi Sarah, I just got off home IV's. Just culturing PA might not be enough to do home IV's, it'll probably depend on how he's feeling, his PFT's compared to his baseline, and how much he got better on Cipro and Tobi. It's up to the doctor, but if he's still culturing PA you can always push for...

I've had 6 embolizations. Don't recall the fever, but do recall a bad time following it. My lungs felt strange, a little cold and slightly pained. My back hurt, probably from not being allowed to move my leg after the procedure. No bronch beforehand. I usually don't bleed for a little while...

I've had 6 embolizations. Don't recall the fever, but do recall a bad time following it. My lungs felt strange, a little cold and slightly pained. My back hurt, probably from not being allowed to move my leg after the procedure. No bronch beforehand. I usually don't bleed for a little while...

I'm surprised you haven't had one too. I just had my PICC removed yesterday! I've been getting PICCS since the early 90's, on average 1 maybe 2x per year for usually 2-3 weeks. I don't recall ever having a surgeon consult, seems odd to me. I think one of the benefits is they'll protect your...

Sounds like there's some misunderstanding out there. Jamest is right, you should take at least a low dose. While fat is hardest for us to digest, we still need help with protein and most carbs. Each enzyme capsule should have 3 types of enzymes in them: Lipase: absorbs fat Amylase: absorbs...

I used to get nauseous badly and sometimes stabbing pains in my gut while on antibiotics (IV or oral). I think it has to do with the healthy flora (good bacteria) in your gut being destroyed, taking probiotics (like acidophilus) about 2 hours after the abx, it should help temporarily restore the...

Creon is sensitive to extreme temps, as all enzymes. Keep the lid on and out of the sun or hot car. I haven't heard of efficacy decreasing over a month. Don't go from 16/meal to 4/meal, 4 definitely won't work as well. I was taking around 14-16 Creon 20's per meal and switched to Zenpep 2 years...

Pari for the nebs are good, but for the compressor (the machine) I go with Devillbiss, I shopped around a few years ago after two Pari pronebs I had barely pushed any air through, I got the same brand of Devilbiss I had 20 years, it's a workhorse that keeps on pumping for many years. It's big...

It's simply a gamble. Having two kids with CF is just like flipping 2 coins and they both land on heads twice, except with more sex and less coins.

Yes Cayston takes about 2-3 mins with the Altera. It uses a silent ultrasonic neb that mists faster. I haven't seen any side effects. What do you mean by the ingredient "being around for a while"? I've seen the Tobi be more effective, but the effects can vary by person. Usually the dose is...

I recall the softgels have more K, so I go for that. You can get them from CF services pharmacy. I know some mail order Rx places that have it too, Amed here in SoCal.

I get the prescription strength stuff, mephyton, 5mg. I just looked at some OTC vit K supplements, typically seeing under 500mcg, which is 10% or less of the prescription strength. The ADEK's and CFsource Softgels provide ~5-800mcg it in a water soluble form, which is better digested by us. It's...

Thanks ya'll

I've heard of transplants being denied due to Burkholderia Cepacia, but that was over 10 years ago. I don't know why cultures pose an issue. I'm sorry Shelby, I wish you guys good luck.

Shelby this sounds odd to me as well. I just looked on CFF's care center list in CA and Keck is listed, so you must have a CF doc overseeing him. Honestly I think most CF centers are teaching hospitals, it's pretty common. But nothing should get done without approval from a CF doc. I've never...

Regarding my dismissal, I meant blood in sputum as opposed to straight blood without sputum. The latter is a bigger deal and can vary in severity a lot for me, I've had 6 embolizations since 2000, but those are just when it's really scary, like 2 cups of blood in 24 hours. Not that common...

I'm a chronic bleeder for the last 20 years. If it's just a bit of blood in the sputum I have a similar response, "crap" and go back to bed. Some things I've found help are CFsource softgels (w/ water soluble vitamin k, promotes clotting), probiotics (enhances vitamin k absorption), and then...

Do you mean the old one that's about 2ft tall? I'd be hesitant to ship it since it's heavy and probably has sensitive pieces in it. See if Hillrom has a roller case that will fit it. I've taken mine, which is the smaller 1ft tall version, the roller bag makes it easy. Get a Dr.'s note and you...