The menu:
- Aortic valve replacement with an On-X mechanical valve
- Ascending aorta and aortic root replacement with a Dacron graft
- Aortic arch endarterectomy and aneurysm repair
- Endarterectomy and bypass grafts for 4 coronary arteries, including the left main coronary artery, the left anterior descending (the LAD, or widow-maker) and the circumflex arteries.
Additional mandatory procedure:
- Circulatory arrest (look it up!)
The date:
- February 11, 2016
The duration:
- 13 hours
The place:
- Provo, Utah - the Utah Valley Regional Hospital
The result:
At least 10 more years on this side of the dirt.
Those who know me well will tell you that I don’t lie. This is not because of any moral high-ground prerogative that I have set for myself. The reason for this is simple, to me: I have been told since I was 8 years old that I will die young. And I have never wanted to go before every single person I ever met knows exactly what I think about them, or about this world. I want to go in truth and leave people with the real me.
Ever since I was 8 years of age and my own mother read my cholesterol in her lab and discovered my FH diagnosis, I have been given more expiration dates that I can count.
First, I was told that I would probably not make it out of my teens. With sky-high cholesterol and no treatment available, this was the only outcome. Then, it was that I would not make it past 25. And then, because I did make it past 25 but I moved to America where people are afraid to make predictions so you won’t sue them, they stopped giving me an expiration date, but being used to moving the target, I kept giving myself one.
From one health event to another, I made it to 40, when I had my open-heart surgery that you read about above. And that made me stop and think: is this it? Will this scary, big surgery kill me? Is this now the end? What did I have to show for myself for the first 40 years of my life? And was it going to be all over? Will I never get to see my nephews grow up and graduate and marry and have children, or what will come after this big precipice to allow me to finish all I am planning to do here, on Earth?
I told my husband the night before my surgery that I just feel it in my heart, and in my bones that I would come out of the surgery and I have a lot more life to live after that. I felt that God had put me on this planet to accomplish a lot more than I did in those 40 years.
On February 11, 2016, I had no idea what February 12 would bring me, I had no idea what kind of body I was going to be left with, but I knew my heart would continue to beat ... Don’t ask me why and how I knew that. I just did. It was a force bigger than me ... And a lot like faith: you had to just kind of believe it was true, as you could not find solid proof for it.
I made it out of that scary 13-hour surgery, so I crushed another expire date. My surgeon promised right after surgery that “it was going to be up and at ‘em from then on out”. I was mortified. I could not sit up the day after the surgery, I could not eat and my legs were made of jell-o. It was not going to be “up”, I knew that for sure. But “at ‘em”? No way, no how.
But I learned quickly and I have been learning all these years that he was right. I have learned that there is something inside me, or something from outside of me, or both that gives me strength and patiently puts one of my feet in front of the other for me, and every day, in baby steps, I move on.
10 years later now ... and I still wonder sometimes: what will eventually kill me?
I have had many scares during this time - many scares that made me go “uh-oh. What if this is it? What if this is the end?” And yet, this invisible strength and force heals me and keeps me breathing. Keeps me ticking. Keeps me here.
There has been a lot of fear. A lot of emotions and scared moments:
The first time I seriously cut my finger right after surgery, thinking I would bleed out (from blood thinners), I thought it might be over.
The first time that I had to go to ER because my heart was beating erratically, I was so dizzy I could not stand up from a chair (at work), and my blood pressure was very low. At the ER, they gave me a bag of potato chips to elevate it. Honest to goodness, true story.
The second time I went to the ER a year later because I had some sort of chest pressure with a cough and the Urgent Care doctor was too afraid to weigh in on it because, you know ... you’re a heart patient, it needs to be investigated further. I cannot ever have just a “normal cold” or something ... If I have something remotely related to my chest, doctors step away and call cardio for a consult, or an echo, or a CT!
The one time I fell literally on my butt on a jetty at Fort Fisher, on the North Carolina coast, on sharp, rocky asphalt mixed in with seashells that cut me open in 1000 places, full of algae and muck, it ripped my thigh wide open, scraped raw and thought for sure some flesh-eating bacteria will get into my blood stream and eat around my mechanical valve and that’ll be the end of my heart and of me, for sure. I watched my symptoms like a hawk for a couple of weeks, because I was sure something poisoned me through that massive open-wound. It was a good thing it happened during the Covid years and I had my car full of sanitizers, alcohol bottles and disinfectants - I poured everything I had on my leg to make it back home to some gauze 2 and half hours later.
The Covid years were absolutely unbearable! Every headline placed me at the top of the risk-scale for severe Covid and death. We stayed sheltered and masked for way longer than needed, probably, (I still do mask in certain places) because I thought this will surely kill me. My heart won’t be able to handle it.
But I lived through 3 bouts of Covid and I have been incredibly lucky to have no heart side-effects (that I can tell or that anyone can tell yet) from it. Just a chronic cough that no one can explain, but everyone seems to point at Covid (of course) to be the cause of it.
In the past few years, I have been diagnosed with heart failure. All the damage that very high cholesterol has done to my arteries is finally catching up with me. I have accumulated more discomfort, more symptoms and consequentially more drugs to treat this. But I am moving on and managing it, insisting to have a full life and live like I still have another 50 years ahead of me. Because I might. Every day is a challenge and every doctor’s visit is a struggle. But it is all worth it and more!
Two caths and three cardiologists later (from my surgery), I still learn something new about my heart every single year ... But I am not gone. I am still here. Still believing and truly feeling that it’s not my time yet. Not even close.
I look back and I see so many challenges, so many crooked roads, so many bumps ...
I have learned how to live with an ever-changing heart. My heart is still a mystery to me but what I know is that it is a living, moving, living organism that changes and evolves - with disease, with age, with stress - it changes, and morphs into a new organ almost daily ... I have learned to listen to it, and although I still don’t know what exactly it’s saying, I know better when it’s not well and is asking me for help ...
I have learned so many more things than I ever knew before the surgery about how else it can break - with every new symptom (erratic heart beats, high blood pressure, shortness of breath, exhaustion like I have never felt before, palpitations), I learned that one more thing might add to my heart condition.
I am happy that I have lived long enough to see efficient treatment for my Homozygous FH. My cholesterol is the lowest it’s ever been now and from what everyone tells me, all the scientists and doctors, there is not much more cholesterol adding on to my arteries. But my heart is still seeing new symptoms from 40+ years of this white fatty mess clogging up my arteries. Because the damage has been so extensive, there is no immediate reversal of my heart disease, unfortunately. But it is not who I am. I am just a person with heart disease. I am not the disease.
A heart patient will always be a heart patient, they say, but in my world, a heart warrior and guardian will always be a heart warrior and guardian ... So, we fight, and we stay vigilant. It’s a full time job that we get better at by doing ...
I often wonder: have I made these 10 years count? I am grateful to my incredible, gutsy surgeon for doing so much to not only save me then from dying but save me again, and again, every year after that for building strength into my heart and arteries to last me ... well ... my lifetime, such as it is ... But have I made his efforts count? Have I made this time count for me, for the world, for those who matter most?
I run through my head often all the many things that happened after that day, 10 years ago, and take toll.
I have moved across the country again and also driven myself across that country. All 2000+ miles of it ... I have taken road trips all the way into Canada and seen two more continents I never saw before.
I have been here for my family for all the milestones - my nephews graduating various school levels, even high-school, getting girlfriends, learning how to drive; my sister going back to school, I have been here to see my sister become an artist, and I have finally had a career as a writer - my life-long and childhood dream. I loved pens before I knew what they do.
I have been here to celebrate my dad’s 70th birthday. I have been here through his passing and my entire family’s completely falling apart while trying to cope with. God sees what we don’t, and He knows I have more strength to share with others who don’t in times like these … I am glad I did.
I have been here for my mom’s rapid transformation into the shadow of who she was before, when her best friend, her lover, her everything left her alone and unconsoled. I have been here for all her pain and all her estrangement and all the losses ... I felt her pain just as hard, my heart only knows how hard, but I have felt glad that I was able to be here, every step of the way. I would not wish it any other way.
One bright shining light in my journey has been that I have been given the chance to advocate for people like me in these past 10 years. I have humbly become part of The Family Heart Foundation’s family of ambassadors and I have met and made friends with people like me (I knew no one like me before my surgery, other than my own family members) while sharing my story with so many others. I hope I helped at least one person ...
I have published articles about my American life in a hometown magazine back in Romania, sharing the cultural differences and surprising similarities between my two worlds ... I have learned through this that I have so much more to say.
I have been here to see my sister turn 40, mother in law turn 80 and my husband turn 50. I have been here, next to my husband, for all the job losses and friend losses and friend gains, too, such as they are ... We bought a new house, we found new doctors, we coped with new challenges, together - and my heart is still ticking ...
The crowning personal (or should I say selfish) accomplishment, I think, besides just still being able to breathe and live the life I want to live, is having been to Africa ... This might not be something I shared with the world, per se (although it did change who I am as a person and how and what I share with the world), but it was a private accomplishment that transformed me more than anything else before.
You hear so many quotes about how traveling to Africa is a reset for your world and that is only just an understatement, only scratching the surface ... Everyone should go there at least once to get in touch with who we truly are at the core of our being. When civilization and complications are stripped, we remain as we are - pure and infinite ... There is so much richness to replenish in ourselves in this very journey!
The day I turned 50 opened up with the most spectacular sunrise of my life, under the African sky - and this is when I told myself: I’ll stop counting and stop giving myself aleatory deadlines ... The end is not mine to know. And as I did 10 years ago, I truly feel it in my bones that I still am called to be on this side of the dirt for a heck of a lot longer ... Things are not settled yet, and my heart is not done telling its story.
Over the years, I have been pushing boundaries, despite all the physical obstacles ... I keep telling myself: if this life is so short, I wanna do what I wanna do while I can still do it. Altitude bothers my heart, something awful - so bad, that we had to move back to sea level. But I love the top of a mountain, so I push. When I climbed (by gondola) the 11,000 ft Hidden Peak at the Snowbird Resort in Utah after my surgery I truly felt like I conquered the world.
I climbed on my own two feet The Ensign Peak in Salt Lake shortly after my surgery ... It is only 5,400 ft, but even 2,000 ft bothers me ... but I did it, slow and steady - best view of Salt Lake City! I got dropped in the middle of the African Bush with not so much as a human establishment anywhere to be seen from the plane, for hundreds and hundreds of miles, much less a hospital, or emergency room, or even the specter of a doctor. I did it - and I felt free and unbelievably lucky! And I cannot wait for more ... Little by little, I find that I am not thinking so much of death anymore. Just life. Death is a given. Life, we have to work at it.
Today, 10 years later (happy birthday to my brother in law whose birthday is today and whose day I will forever share as my rebirth; still sorry I ruined a birthday for you 10 year ago!), I still have no idea what’s ahead, I still have (on paper) a very sick heart, but I am more convinced of our resilience and strength and ability to push through barriers, boundaries, and bumps than ever before ... I am convinced of our sheer stubbornness to live ... I am firmly planning on living. Definitely not planning on dying.
My mom always says “dying is not that easy.” And she is right ... I am nowhere near ready for that ...
