Hi! 38F with OnX

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NomadicOwl

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Joined
Oct 2, 2024
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2
Location
Washington, D.C.
Hi! I'm a 38yo female in the United States, OnX aortic valve and prosthetic root/ascending aorta replacement in 2023. I had the surgery due to aneurysms (4.9cm at root) and a Loeys-Dietz Type 3 diagnosis. [How I ended up with a new valve is a little more complex. During the consultation and pre-surgery meeting, the surgeon strongly suggested and I agreed to a valve-sparing root replacement procedure. Then, when I was about to be sedated on the OR table, he came in quickly to ask if I wanted to replace the valve anyway, citing a few statistics that he had never mentioned before. In a panic, I agreed. I've regretted it ever since, especially when the OR report later indicated he had mistaken my diagnosis at the time he came into the OR that morning. ...It's a whole thing.]

The constant clicking still bums me out, especially because it distracts me from reading and meditating, but I try to focus on the scientific fascination of hearing my own heartbeat. I still haven't found a steady warfarin dose, but that is largely my fault for constantly traveling and changing up my diet. For example, it has been out of whack the last 6 weeks due to taking dexamethasone and malarone for travel.

I use a home meter through Acelis Connected Health. Thanks to this forum for suggesting Reliaston for strips! That saves me a lot of money over Acelis (even using insurance!). Unfortunately, I am still stuck with a local coumadin clinic for my warfarin Rx, but I am hoping to convince my cardiologist to start prescribing it. I felt solidarity in this forum that coumadin clinics are annoying. They won't answer even the simplest questions about dosing, how warfarin works in the body, how long it takes to take effect or wear off, etc. They treat me like a child when it comes to discussing the drug, yet their own dosing adjustments constantly spike my INR dangerously high or dangerously low. I haven't figured it out either, but doing it myself is no worse (and less annoying) than talking to them every week. :) I've learned a lot from research on NIH's National Library of Medicine and this forum!

Look forward to interacting more going forward!
 
Hi and welcome

Sorry about your rocky start (that bit about being press-ganged into a valve is really weird). I'm sorry to read that.

Unfortunately, I am still stuck with a local coumadin clinic for my warfarin Rx, but I am hoping to convince my cardiologist to start prescribing it. I felt solidarity in this forum that coumadin clinics are annoying.

Yep ... I hope you get the cardiologist to prescribe, myself I just get it from my local GP. I show them what I'm doing and how I manage (I've got 12 years of data which always stuns them) and they just write me the scripts.

I just buy my stuff out of pocket here in Oz (and yo ucan do the same over there too, see this thread).

Best Wishes
 
Welcome to VR!

OnX aortic valve and prosthetic root/ascending aorta replacement in 2023
I had the same procedure in 2021. St Jude mechanical valve.

Thanks to this forum for suggesting Reliaston for strips! That saves me a lot of money over Acelis
That is also where I buy my strips, since eBay stopped selling them.

Then, when I was about to be sedated on the OR table, he came in quickly to ask if I wanted to replace the valve anyway, citing a few statistics that he had never mentioned before. In a panic, I agreed. I've regretted it ever since, especially when the OR report later indicated he had mistaken my diagnosis at the time he came into the OR that morning
I hope that you hire a good attorney and go after him. As you describe it, that sure sounds like malpractice. There are a few bad eggs out there in the surgical world, and they need to be held to account.

Glad that you found us!
 
I hope that you hire a good attorney and go after him. As you describe it, that sure sounds like malpractice. There are a few bad eggs out there in the surgical world, and they need to be held to account.

Yes, sadly, I am pursuing legal options--I want to make sure this does NOT happen to anyone else. When I asked for a follow-up to discuss my concerns, the office refused to meet with me. I feel bad because he did a great job otherwise, but it needs to be addressed beyond my own grumbling.
 
The constant clicking still bums me out, especially because it distracts me from reading and meditating

I feel you about this too, I enjoy getting lost in a book and I would meditate too. I recently started going to yoga which is great for relieving stress but some positions I feel the ticking can be super loud and can hold me back from fully focusing on the present.

But to try to be positive its a nice reminder its working and allows me to do things like read, meditate and do yoga :)
 

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