@julestj
-
Julie Martin replied to the topic Just found out that our baby has CF in the forum Friends and Family of people with Cystic Fibrosis 2 years, 1 month ago
Do you have a CF center near you? Check out the cystic fibrosis foundation to help you locate one. There is such great treatment and care available for CF now! I’m 54 and my care is at the University of Washington. Good luck! I’m healthy and hope your baby will be too. Ask questions of me anytime-would love to be a resource. Julie
-
Julie Martin replied to the topic Energy levels in the forum Adults With Cystic Fibrosis 2 years, 6 months ago
I allow myself to sleep a lot when my energy is low. I really notice my eating habits at those times and have to force myself to take in nutrition. It usually takes a couple of days for those calories to kick in, but I do usually see an improvement in my energy levels. Eat 🙂
-
Julie Martin posted an update 2 years, 6 months ago
I’m gaining much-needed weight after 5 weeks on TriKafta. I’m tiny, only 4’10”, and I finally reached 91 lbs today after losing 15 pounds over the past three years (I had gotten down to 74 lbs which was dangerously thin and I was very sick.) Hooray!
-
Julie, this is amazing! Celebrate this win!
-
This is amazing! I am trying to gain 10 pounds in 2020 so trying to work my way there
-
-
Julie Martin replied to the topic Going Home On IVs: Overwhelming or Amazing? in the forum Adults With Cystic Fibrosis 2 years, 7 months ago
I am so thankful for home health and its options. I am on home IVs about 5 times per year, 3-4 weeks per episode, 2 drugs, each every 8 hours. My husband is a huge help and does my morning doses for me (hooking up, etc) while I try to sleep. Managing the schedule is often rough because one can feel pretty tied down, but being at home surrounded by…[Read more]
-
Julie Martin posted a new activity comment 2 years, 7 months ago
Thank you. I hope you’re feeling better.
-
Julie Martin posted a new activity comment 2 years, 7 months ago
Thank you!
-
Julie Martin became a registered member 2 years, 7 months ago
-
Julie, hello and welcome to the forums! I’m Jenny (32 with CF) one of the forum moderators. If you have any questions about navigating the forums, or there’s something specific you’d like to chat about, feel free to reach out to myself or my co-moderator @bailey-vincent. We are happy to help and so glad that you’re here!
-
Thank you!
-
Yes, hey Julie! I’m late to the party, but so happy to welcome you along with Jenny. I am 33 (it’s apparently the 30s club around here?) and actually just got out of a hospital admission, so- as you can see- Jenny and I truly try to mix living with this illness with supporting those impacted by it online at the same time. If you ever need someone…[Read more]
-
Thank you. I hope you’re feeling better.
-
-
-
-
Julie Martin changed their profile picture 2 years, 7 months ago
-
Julie Martin's profile was updated 2 years, 7 months ago
Eating is something I do a lot of… always! But it’s probably a good idea to pay closer attention to the type of calories I’m taking in during these low energy times. It’s entirely possible that I’m still eating, but not taking the time to choose the best foods since I’m already so tired (I don’t like to cook during these down times). Thanks for…[Read more]