To recap: my cardiologist strongly recommends my aortic valve be replaced by a mechanical valve, and most specifically by an On-X valve. I won't attach links here, as I trust you all can find them online, by just googling the terms you find in this blog. My various doctor friends strongly recommend this valve as well. The research online also mentions that "for my age group", the On-X valve is the best solution right now.
I have one friend who has had the bio valve for five years now, and he's mostly a fan of that, since there is no medication management after it, virtually. Another friend of my husband's has had the On-X one, and he manages that quite well. Lots of input!
I personally am leaning heavier towards the prospect of the On-X valve, too, from what I have read, except for the blood thinners. But my husband has a friend who has been on coumadin for this valve (he was a very early recipient of the On-X, before it was even approved by the FDA) for 18 years, and he explained to me life on coumadin. It does not sound much worse than a diabetic patient monitoring their insulin. In case of a bleeding episode, however, is much worse than that, of course. But I try not to live my life for what might be, you know ... Sure, I might fall and bump my head and bleed from my brain, but then again, I might not.
Anywhoo, I digress. The management of it is not so daunting to me, as it is the interaction of blood thinners with either my current medications or with my existent risk factors, for clotting, stroke and heart attack.
I spent lots of hours and days researching, signing up for chat groups, etc, to hear first hand stories of patients like me. And I find everything very helpful and fascinating - and I am endlessly grateful for people who take the time to share their story. It's greatly helpful and inspiring for all of us who will follow into the same footsteps one day.
Each journey will be unique, no doubt, as we are all so different, but some things we will all share - the fears and the questions we are faced with will bear some similarities.
I have also spent most of the past month jotting down my questions for my surgeon and my cardiologist. Some of them are questions, some of them are mostly just asking for confirmations that what I have read is not quack.
In my list "for the docs", I started outlining my current health: part of my jitters is the fact that my heart, my circulation has already been so damaged by my FH. I am already at an increased risk for heart attack and strokes, because of my various stenoses, and this surgery as well as the life after it, scares me double with all that to consider in the picture.
So, the first part of my list is "this is who I am today. Do you (doctors) perceive this state to be a risk factor during and after surgery, and how do you plan on monitoring this?".
Then, I gave them my list of current meds and cholesterol numbers - to show that even on high levels of statins + zetia + OTC my FH is not peachy.
And then, they will get a list of all my questions - screen shot below. Note that this is a very personal list - this will just reflect my questions, my fears, my unique case of what can/ cannot affect my own health - they are very specific to me.
However, I trust that if you read them, and one day you'll be found in the same situation as me now, they'll trigger questions you might not think about at the time. They came from my research - everything you'll see noted is something that someone else either experienced or some health sites mentioned as a possibility - I just need to run some of these by my doctors and find out what they think about all the ones that I am nervous about. After all, I am leaving them in charge of not only my heart, but my well-being and life "after".
In my list for them, I have also included a comparative list for all the three kinds of valves: tissue valve, traditional mechanical (like St. Jude's) and On-X valve. I used this list online as a guide for my questions there. It's pretty clear and easy to understand. I do get it, that it's on the site of the people who make the On-X valve, but it's a good guide for questions and I want some confirmations from the surgeon's experience to see if these guidelines check out.
This is my list of questions. In bold are the most important ones to me. The one highlighted in gray is of utmost importance to me.
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