William
Forum Replies Created
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High proteins and low sugars are the best! I’m sure you do a great job helping loved ones manage their glucose.
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Replying to this so it gets noticed and someone can help!
I’ve never personally dealt with this issue so, I’m unable to help. However I hope someone who knows what you’re going through sees this and offers advice/help!
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They have a great person at their side, ready and willing to fight for what they need.
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My big takeaway (and I agree with Lara) that our value isn’t in what hinders us, but rather where our strengths are. We are not just our disease. We are more than cystic fibrosis, even if it is a large part of our life.
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While there have been folks with digestive issues while they’re on Trikafta, I’d recommend bringing up your issues to your doctor. They might be related to something else going on with your digestive system and not Trikafta based. I know for me, I recently adjusted my enzyme intake. After a week and a half, my stomach has settled a bit and is not causing me issues. Hopefully, I’ll be gaining significant weight again. If I was you, I’d talk to your doctor for a CT scan or an MRI and go from there.
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It’s true that CFTR’s have had innumerable affects on the body outside of the respiratory area, both good and bad, but a lot of people would argue that the benefits to their lungs have made life worth living. To another point you made, CF does need to be made more aware to those who do not often treat it within the medical field.
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Also, just because I know this as a huge baseball fan and have seen what has become of my favorite athletes growing up, I wouldn’t recommend it because the long term results for sure outweigh the short term gains.
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If you don’t plan ahead you plan to fail!
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No more guilt! It’s good to listen to our bodies.
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Walks and water are definitely helpful! It’s good that they also help you fight fatigue.
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It’s definitely not your fault. We all need rest and what may look to others (or even ourselves) as a lack of motivation is your body trying to tell you it needs rest.
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Napping is definitely the best and supremely beneficial!
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That’s some great advice, Bubbles. I’ll definitely keep a snack on hand in case I feel like I’m getting low after an hour. Thank you!
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While I wish I could join you on the bourbon Rusty, I will look into the cereal you named. Sounds delicious!
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Where do these doctor’s practice?
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You definitely took great preventative steps to help you out. Hopefully next time you will not have any issues going forward!
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Jonny,
I take xyzal for my allergies and when I started they did make me tired (I’d recommend taking it at night) however, after a week or so my body adjusted and I was fine.
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Yeah I can understand that! I used to love playing basketball (despite not being good) and working up a lot of mucus out of playing.
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That’s great that you feel great benefits from exercise compared to regular breathing treatments! When would you say you felt a change?
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One has to wonder if the body is taking a hit with the experiences of these side effects or the body is attempting to adjust to these side effects.
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Kay, I would look into seeing if you can acquire a Vest of some sort (with the help of insurance) that does airway clearance for you. I’m not sure if your medical team would write a recommendation for you and, if they don’t, I’d seek out a new medical team that actually cares.
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It’s always fun to travel. Best of luck!
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I’ve always wanted to visit Australia. Us here in the United States, depending on where you live, experience all four seasons in one day!
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Yes, and I find that the IV’s really do the best job at getting rid of any infection!