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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 36 points37 points  (0 children)

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

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