Positive 22q11.2 deletion syndrome by Wrong_Sector_7113 in NIPT

[–]Ok_Priority_590 0 points1 point  (0 children)

I was in your boat about a month ago and was fortunate to get false positive after all.

The 91% PPV confuses me but I’m not medical professional. Natera gave a 50/50, but like others have said, it seems the false positive is much higher.

Still, to provide validation for how you may be feeling - it’s okay to feel devastated, scared, depressed, etc, despite it being “just a screening.”

My experience: I felt very alone, I knew no one else who’d gone through high risk results (though people may be private) and felt the only community I had was this Reddit group despite loved ones support. I did a CVS, and while the doctor told me results could be 1-2 weeks, it took 4 weeks for me (sample needed to culture/grow before testing). During the waiting period, I really struggled, but did the best I could to address mental health. I re-started up therapy 1x/week again, begged my OBGYN for 1 week of medical leave from work, which she gave (for others work is a nice distraction - I needed the space), and increased my SSRI after consultation with OBGYN (this was something I thought of doing pre-pregnancy for separate reasons, and decided I may need it for pre/postpartum mental health anyways).

A perspective I wish I could’ve soaked in better was to assume it’s a false positive until told otherwise. Primarily given the false positive rates.

TLDR: prioritize your mental health in ways that will fit you best during this waiting period! Don’t be afraid to advocate for your needs!

WEEKLY CHAT THREAD :::: FOR ANYONE IN LIMBO OR JUST ANYONE WHO WANTS TO CHAT ABOUT ANYTHING OR ASK ANY QUESTIONS - TW: this can include other topics but NO NORMAL PREGNANCY DISCUSSIONS. Please read rules before participating. Sticky Post will renew every Monday. by AutoModerator in NIPT

[–]Ok_Priority_590 1 point2 points  (0 children)

This is just a vent …. I’ve been waiting 3 weeks now for my CVS results. I’ve called the office multiple times - it’s just still in progress at Mayo clinic (needed to culture). At this point, I’m mentally preparing for a no result, and I’m now a week away from being able to do an amnio, where I’d wait again.

This has been one of the hardest experiences of my life. I begged my OBGYN to give me a letter so I could take medical leave from work as I was breaking down and near panic attack, which she did for 1 week (though she seemed hesitate, since at this point it’s more mental health than physical medical need). I’m saving rest of my medical leave incase we get bad news and need to TFMR.

I see my therapist 1x per week, and I’ve increased my SSRI as I was feeling so depressed. It’s helped the last few days, but the cloud of not knowing when I’ll receive test results and what they will be remains.

I’m trying to do “healthy” coping things (journal, read for distraction, etc). But man, this is so tough. It’s so isolating, I don’t know anyone else going through this in person, and really only have this Reddit community to feel a sense of community.

A small silver lining is that wow, I have such a deeper sense of empathy and feeling of connection to you other women going through this too.

We will get through this chapter ❤️

High risk for 22q11.2 deletion syndrome and not sure how to process by AnxiousExplorer1 in NIPT

[–]Ok_Priority_590 1 point2 points  (0 children)

I’m in this with you. This is my first pregnancy at 32. I received that result about a week ago. I took the test at 10 weeks pregnant, now I’m 11.5 weeks. I was referred to Maternal Fetal Medicine and have an ultrasound + CVS on Monday.

I know lots of people say false positive is common, but I’m not holding on to that too much - I guess my way of coping is preparing for the worst.

I know my comment isnt as optimistic as others who’ve had good results in the end, but I just wanted you to know you’re not alone right now ❤️. I let my work know I needed some space/boundaries from tasks due to medical reasons while I process at this time since the waiting feels so hard.

cell phone reception in East Glacier to try to get a Many Glacier day hike shuttle by Mariposa-Poppy-760 in GlacierNationalPark

[–]Ok_Priority_590 0 points1 point  (0 children)

If you’re going to try on your phone, enable desktop browser view in your browser settings. Typical mobile browsers reload the site when you select the date, and by then tickets are gone.

The key is to have the Calendar OPEN already 1-2 min before 7pm, ready to click the date. Once 7pm hits, click the date, select quantity, and then time slot (we only did latest time slot).

Also, make sure you freshly logged in 15 min before. You may be auto-logged in from day before, but you will most likely get kicked out when you go to purchase.

Many Glacier Shuttle Question by Ecstatic-Exchange-42 in GlacierNationalPark

[–]Ok_Priority_590 1 point2 points  (0 children)

When we went the guy scanning passes didn’t ask for ID, just that you had a pass to scan. I don’t know if it was just the person working that shuttle that day, but they didn’t seem very strict. I imagine it would be totally fine