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  1. Spookygal

    Different strokes...

    Right. Also- From what I’ve read, a bigger incision (normal sized incision) is easier for the surgeon to get a good vantage point of what he’s looking at and it’s easier for him to do what he’s gotta do in there. I’d probably just let him do his thing.
  2. Spookygal

    Question about genetic testing!

    Yeah it’s crazy on Reddit haha.
  3. Spookygal

    Different strokes...

    So sorry to hear but glad everyone seems on top of it!
  4. Spookygal

    Question about genetic testing!

    That’s where I’m at. I’m an OCD anxious person and having info both makes me crazy and also puts my mind at ease. Lol. But I’m now very worried about the results- albeit it’s seemingly impossible to find info to get it done. I saw Invitae - but also see they’re now filing for chapter 11 -...
  5. Spookygal

    Question about genetic testing!

    I’m 100% positively not having kids either
  6. Spookygal

    Question about genetic testing!

    Good info here! Thats what I’m worried about, a specific Ehler-Danlos. The vascular one. Which is pretty significant and deadly apparent. I guess with my age (34) and having BAV and a TAA - that could point in the direction of a connective tissue disorder - even though my cardiologist said “I’m...
  7. Spookygal

    Question about genetic testing!

    Okay I’m coming clean here 😂 so basically I went down a very intense Reddit/Google rabbit hole last night and maybe cheated on you guys A LITTLE and asked a TAA Reddit group and since I’m 34 with these issues (youngish) I got a lot of “omg you should do genetic testing” especially for the risk...
  8. Spookygal

    Question about genetic testing!

    Hi guys - I’m sure most of you got generic testing after learning about your BAV/TAA/whatever else - Can anyone tell me the steps in doing that? I’m feeling … pellicle cover your ears 😂 … *anxious* about not knowing if I have a connective tissue disorder and feel like I need to know that ASAP...
  9. Spookygal

    Update!

    Thanks for this! I’m 5’9 so it seems I’m in the low risk section for now which makes me happy :) I do feel like I have a competent cardiologis:) I’m for sure glad this was found- VERY grateful even though it’s given me some grief. I don’t think I’m going to drop dead as much anymore though...
  10. Spookygal

    Medication question!

    Shaken!!
  11. Spookygal

    Update!

    Hi all!- Hope everyone’s doing well. Last time I was here I mentioned I was getting put on a new med cocktail of losartan & metoprolol - all good on that front! Happy for a little extra protection 😊 Some other updates: Today I got my repeats scans, a CTA. My cardiologist just called me and...
  12. Spookygal

    Medication question!

    It’s been a few weeks and I’m happy to report aside from some headaches in the beginning (which I am prone to anyway, migraines etc) I’ve been feeling good with no side effects from my new med cocktail! :) Thank you so very much
  13. Spookygal

    Update!

    Thank you!
  14. Spookygal

    Update!

    Thanks so much chuck!
  15. Spookygal

    So far, so good – Part Three

    I just read your posts and couldn’t put them down! Lol. Thank you for this play by play, it put me as ease and I look forward to hearing more from you. Hope you’re still doing well!
  16. Spookygal

    Update!

    Thank you so much for these super helpful and kind words!! Sounds like you got it all figured out :) I’m chipping away!! Trying to stay positive!
  17. Spookygal

    Medication question!

    Hi everyone- hope you had a great weekend/Monday! So last week my new cardiologist switched me to Losartan 25mg from Lisinopril 20mg and added metoprolol 25mg .. long story short I’m terrified of starting new meds! Last night I finally took my first does of losartan (felt a little weird this...
  18. Spookygal

    Update!

    So today I had my new cardiologist appointment - it went pretty well! First of all, I instantly clicked with this doctor. He was really nice. He was really funny. He answered all my questions, and he just made me feel really safe and knowledgeable about everything that’s going on. The...
  19. Spookygal

    33yo with BAV and severe stenosis

    What are your slight symptoms ?
  20. Spookygal

    2 very important appointments coming up

    Thank you so much for this wonderful reply. Gives me hope lol. I’ll try and enjoy the next couple weeks before my appointments!
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