Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
“Up and at’em!” – is what my surgeon said to me the day I came out of ICU, two days after my surgery. Three years ago tonight I came out of my open heart surgery with a new mechanical aortic valve, a new aorta, a repaired arch and four bypasses on four major arteries in my heart. About a week from that day, I had a heart attack while laying in my hospital bed waiting to be released.
But two days after the surgery, the surgeon said that once I would leave that hospital the sky will be the limit for me (“It’s up and at’em from here on out!” – he said). Well, as those of you who have been through this already know, it takes a lot more work than this to be “up and at’em” again. But also as many of you know, it’s not impossible.
I have been so blessed to have three more years added to my life, three years that now, looking back, I am not sure if I would have had, and not sure what they would have looked like if it were not for this surgery. I have had set backs and doubts that my heart is fine, I have felt and will always feel like a permanent heart patient, I still have regular appointments, take drugs and still manage the complications from the surgery daily. But … I have also lived a full life, too. I have worked full time since three months after surgery. I have traveled, I have camped, and climbed mountains, I have played with my nephews, and went on my first cruise. I have seen The Grand Canyon and walked Venice Beach and Sunset Boulevard in LA. I walked the streets of New York City in 100F weather for four days straight and did not pass out.
This past year, I landed back in the cath lab, for my new cardiologist to try to diagnose my angina and shortness of breath. Then, I landed back into cardiac rehab from there, which didn’t help much this time around, except for giving me the confidence to exercise, angina and all. But I have had a good third year, too: this past year was the first one when my husband finally “freed” me to travel by myself. I jumped on a plane by myself and went on four business trips, one of them for two weeks all alone. No one to ensure I breathe in the middle of the night, and no one to help me store my luggage in the overhead bin.
What I know for sure now is that the journey is long, but it’s so sweet and worth having. Every day that I see the sun, every flower that I see sprouting in my yard every spring, every humming bird that comes and visits our feeder in the summer – I am grateful I get to see it all and enjoy it all. Every morning that I open my eyes and I feel the rise and fall of my breathing chest, every click of the mechanical valve that I hear, I am in awe of how amazing this life and medicine is and how humbled I am that I have benefited from it all. I am amazed at how resilient, we, as a species, are, and how much power to fight and rejuvenate we have.
I am here to tell you that this journey is ultimately so worth taking. I know it can seem daunting if you are coming just now to the edge of what seems to be a bottomless precipice, right before you have to face that cold room where your heart will change forever. But trust me: the desire you have to live and get better, the power and energy you are equipped with to fight through any setback are stronger than any fear you might feel right now. I know you might not see it, but trust me – it’s there.
Whether you do it for your kids, or for your significant other, whether you do it for yourself, or your pet, whether you do it so you can have one more taste of your favorite food or to cross those 100 things on your Bucket List, whether you do it just because you’re stubborn and want to kick some heart disease butt (like I am), or for those two cute Canadian nephews that you want to see grow up and get married one day (like I did), whatever your reason – know that you will go through it and see your life’s dreams come true one day. Just keep at it. Pray. Trust in you and your team and give it all you’ve got. When you wake up on the other side of that precipice you’ll be glad you jumped and the beautiful journey will just then begin!
Nowadays, medicines, doctor appointments, and all, I am happy to be living and to be looking forward to more life. I am glad and grateful that what was once very wrong with me is patched up to the best of our abilities and will allow me to be here, to be present, and to give myself to this life.
After three full years where I have had to re-learn who I am really and I have had to re-learn to be grateful and patient, I am finally able to say that “up and at’em” it is.
Onward, you all! May your journeys be smooth and rewarding. May your gaze be steady and your soul open to receive healing.
For those of you reading here who know me from the Heart Valve Surgery Site (https://www.heart-valve-surgery.com/), happy anniversary to all of you in the 2016 class that supported me and carried me through my darkest days after surgery. Your sharing your stories with me has been a precious gift for which I am forever grateful. I wish all of you, in every stage of recovery and healing, much health and many blessings ahead! And for those of you just beginning: trust and look up! The light is yet to come…
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Blog Post by A.W.
About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.