St Jude's valve 18 years and going strong

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Ambience

Member
Joined
Aug 13, 2020
Messages
6
Hello everyone,

Long time lurker, I created an account to post a question in the anticoagulant forum and thought I'd jump in here and introduce myself. I was a BAV patient diagnosed at birth, I am now 42 years old. It's been a rough journey through many procedures and tests through my childhood. I've joked with a few Cardiologists (the good ones, I've had my share of bad ones too) that I should be an honorary technician for all the research I've done. I've heard much conflicting information through the years, learned quite a bit from asking questions and just my own personal observations of having one of these clicky valves. When my niece was younger, she said it was cool that I had a robot in my chest.

With a mechanical valve comes the world of anti-coagulation treatment. I've seen several shifts of practice in this area, from an IV blood draw by an in-house lab in the same office as my Cardiologist to a rent-a-meter service where I self-tested and phone in my results, to owning my own machine and managing my own dosage to stay in range. I've found my weekly tests at home to be by far the least expensive and most convenient way to manage my numbers, although I also understand that is not for everyone.

About five years ago, I felt a certain level of empowerment and confidence in my valve. It took a great deal of therapy for me to change my mindset from being told to stay away from organized sports to being able to complete a triathlon (with warnings from my Doc about staying away from heavy bicycle traffic). Although not quite the same a normal person, I've come pretty darn close with activity and quality of life.

I have an active dog and live in the Pacific Northwest and enjoy beautiful outdoor scenery and live a fairly happy life, and it's my hope that when I retire that I'll volunteer to Mended Little Hearts to help children and families navigate their own anxiety and concerns.

Pleased to meet you all.
 
Ambience, good to have you on-board here. Lots of knowledge here in all aspects of heart-valve-ology (not a word - I know :)) with many years of experience.

Thanks for the introduction and welcome,
 
................ and it's my hope that when I retire that I'll volunteer to Mended Little Hearts to help children and families navigate their own anxiety and concerns.
Pleased to meet you all.

Welcome........this forum is a tremendous storehouse of info for the newbies......and veterans alike.

I applauded your interest in working with the parents and patients of Mended Little Hearts. I worked with the adult Mended Hearts doing hospital visits for a couple years but never thought about Mended Little Hearts. I know the parents of these young patients must have a lot of concerns and questions.
 

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