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I will say this. I'm 32 so I've been through a lot of hospital stays. The last thing we want to be reminded of is that we're stuck in the hospital and we're missing things. It sucks, but bringing up the things that we're missing out on or that we're sick just adds more salt to the wound. For...

To help us understand where she is in her life and battle with CF, could you please give us your ages? Acceptance and maturity have a lot to do with CF and would help us figure out where that is and what mind frame she might be in. That way we can help you respond appropriately.

You mentioned mild digestive issues. Is he suffering from acid reflux? My lung functions took a 30% drop because mine had gotten worse and the acid from my stomach was getting into my lungs. It can be controlled with medication but it might not fully fix the problem. I had to have surgery to fix...

I have honestly never heard of anything like this, nor do I know anything about cord blood. I'd say it's highly unlikely that it could be used for her benefit.

Good luck! You'll be in my prayers. I hope everything goes smoothly and quick for you.

Thank you for your concern DanfromIL. However, I'm not looking for supplements, just foods that will give you an extra boost. I do understand the risks to trying new things, which is why I research everything (medical or non medical related) before I buy things. Manuka honey has quite a number...

Thank you guys for your input. I'm really liking the honey and finally got used to the taste. I've been doing a tablespoon right before I go to bed each night. I've tried reading several articles about how much I should take and the frequency, but all of them say different things so, that's been...

This is what my doctors said as well. My liver function tests are normal now since I've been on Orkambi. They have left the option up to me if I wanted to stay on it or not. I agreed to stay on it because I'd rather be safe than sorry.

I've had this happen a couple of times and it can happen. Just make sure you're drinking a lot of water when this happens and stop airway clearance until the bleeding stops and take it easy (like you would with a normal hemoptysis.) If the amount of blood (stuff not mixed in with mucus) is more...

I just started taking Manuka honey. I've had a weeks worth of it under my belt as of today. So far my allergies seem to be better than when I wasn't taking it. I do a tablespoon of it at night right before I go to bed since it does make me a little bit sleepy. I'm still getting used to the taste...

I just read an article about a super food for CF that's called mauka honey. It's supposed to help with a lot of things. Just being curious, has anyone used this or does anyone have any recommendations of a super food that they use that works for them?

This is indeed a proud moment! Not only for your daughter but for you too. My parents never wanted to hand over the reigns to be to let me prove that I could take care of myself. It was really frustrating and caused a lot of arguments. I was 23 when they were finally told to give it up and let...

Check and see what kind of medication she is on for her mood and possibly if she's on anything to treat her insomnia, some of them have a weight loss side effect. I suffer from anxiety and depression. For the longest time I couldn't get my weight over 116. My doctor finally figured that out...

My first thought is a bunch of questions. Does she suffer from any sort of GI related symptoms besides being under weight (like loose stools, upset stomach, constipation)? Is she on any type of anxiety med? Is her weight stable or does it fluctuate? How long has she received counseling? As to...

Congratulations on getting your FEV1 back up!! I'm starting to learn that everything is a double edged sword when it comes to having CF. I think that walking the lazy river is a great low impact workout that will help to make you stronger and get things moving and out. Especially if you enjoy...

Welcome to the forum! Yes this is a very common thing with CF patients. I can't really tell you how long it takes to go away because it depends on the person. However, I do know usually oral medications can treat it, but sometimes IV meds are needed to help resolve it. Unfortunately, this can...

Thank you for your response. Can I ask what essential oils you started using?

I'm from Ohio. For me the dry heat actually made it easier for me to breathe. I actually have more issues adjusting to coming home and getting back into the humidity. You can take your vest and other things on the plane. If you can get a doctors note to verify what everything is that might help...

Voted!! Good luck!!

I am still taking Lovenox, but that was ruled out as the cause of the swelling. I'll have to ask about a new bug, but as far as I know I've always just cultured PA. I'll ask about the lower ultrasound too...that's a good idea...thank you!