NomadicOwl
New member
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!
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!
