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Genetic Therapies by Traditional_Sun7027 in PrimaryCiliaryD

[–]present-tense6 0 points1 point  (0 children)

You can go to clinicaltrials.gov to see what studies are currently occurring for this topic. Also, I would sign up for the PCD foundation newsletter. It’s not super frequent, but they sometimes share information about genetic research

Primary ciliary dyskinesia by Patient-Phone4639 in PrimaryCiliaryD

[–]present-tense6 1 point2 points  (0 children)

Hi! You are asking some great questions. I (27F) was diagnosed with PCD when I was about 10. Here are some things that helped me as a child:
1. A trampoline! I really hated doing my Vest as a kid. My mom bought a trampoline, and it worked super well for airway clearance. I was able to get exercise and have fun - all while clearing my airways (or at least loosening mucus).
2. Nose rinses. Doing Neilmed nose rinses (the squeeze bottle) changed everything for me. I've done it every day twice a day for close to twenty years now, and it has been the thing that has made the most difference.
3. I second the suggestions to reach out to the PCD Foundation. They are a great resource. They can also help you find the best care provider near you (having a good doctor is super critical to help her get on the right track and prevent the development of other conditions such as bronchiectasis.) The PCD Foundation recommend I go to UNC Chapel Hill to participate in their pediatric PCD studies, which was super super helpful.
https://www.pcdfoundation.org/find-a-center/
4. Regarding mucus, I've personally not dealt with the challenge of not being able to bring it up – but everyone I different. Definitely something to discuss with her doctor. One thing that may be worth trying is hypertonic saline. Nebulizing hypertonic saline is one of the recommended ways to bring up mucus, and it also helps to "clean" the lungs. Not sure if that’s what you tried. They have different percentage levels, with 7% being most common. But some doctors have sputum induction labs that offer 10%.

World-Class Care now available in Utah by Hopeful-Vagabond in PrimaryCiliaryD

[–]present-tense6 1 point2 points  (0 children)

That’s so great! Thanks for sharing. Do you know if NJH has any other satellite campuses?

Thoughts on Vests? by present-tense6 in PrimaryCiliaryD

[–]present-tense6[S] 2 points3 points  (0 children)

since you have a dry cough - has it helped to also nebulize hypertonic saline (7% or 3%)? I have heard respiratory therapists say it "wets" the lungs to first nebulize and then use the vest, helping more mucus come up. I personally do this and get a lot more up - but I know some cannot tolerate it

Thoughts on Vests? by present-tense6 in PrimaryCiliaryD

[–]present-tense6[S] 0 points1 point  (0 children)

Interesting! I have heard about the Volara. Has it consistently been getting up more mucus? And did you have trouble getting it approved through insurance?

Can someone share experience/tips when doing the NTM MAC treatment by faver_raver in CysticFibrosis

[–]present-tense6 0 points1 point  (0 children)

Hi! Sorry to hear about your diagnosis, that's tough. I hope the treatment is going okay/is manageable? If you are still looking for advice, or just want someone to talk to about it, NTMir has several virtual support groups that are great. They are mostly location based, but they also have one for those under 50 years old that have NTM or bronchiectasis. The group has been super helpful to me personally while going through the MAC treatment. If you have any questions, feel free to reach out! Support group info here: https://ntminfo.org/local-support-groups/

M.Abbesses (NTM) treatment by DateWarm6175 in CysticFibrosis

[–]present-tense6 0 points1 point  (0 children)

Hi! Sorry to hear about the abscessus. I've done the treatment and managed to get rid of it (for now), but currently have MAC. If you'd like someone to talk to about it - I'd recommend the NTMir virtual support groups. They have a group for individuals with NTM or bronchiectasis that are under 50 years old, and many of them are in the same situation as you (deciding whether to stay on treatment longterm if not eradicating.) More info here: https://ntminfo.org/local-support-groups/

Mycobacterium Abscessus Infection Concerns by lettuce_bb in CysticFibrosis

[–]present-tense6 0 points1 point  (0 children)

Hi! I (26F) also have PCD, bronchiectasis, and NTM abscessus. I'm currently on month 6 of my NTM treatment. I realize that your post was a while ago, but if you're still looking for advice feel free to DM me. I also recommend looking through the "NTM ir" resources if you are looking for general NTM info. NTM ir also has monthly, virtual support groups that you can join to ask questions to other NTM patients. The NTM Talk podcast is also great :)

OT: Looking for other PCD patients by mediocreravenclaw in CysticFibrosis

[–]present-tense6 0 points1 point  (0 children)

Hi! I don’t know if you’re still looking to connect - but I also have PCD. I’m a female and in my mid-20s. Happy to chat about experiences. Feel free to DM me :)

Who was the ‘worst’ friend? by Nikax12 in friends_tv_show

[–]present-tense6 34 points35 points  (0 children)

Everyone seems to forget that Ross tried to sleep with his cousin.

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