Counting My Blessings, After 10 Years ...

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 ... 

I never thought I'd call any man an "angel" but here are the two that are responsible for my life: my wonderful surgeon and my one-in-a-trillion husband. Thank you to both!

The Heart Month

US president Johnson announced that February was Heart Health Awareness month in 1964 “to give heed to the nationwide problem of the heart and blood-vessel diseases, and to support the programs required to bring about its solution.” To this day, we still fight against the number one killer of all people - heart and vascular disease. 

February is a peculiar month for me. In addition to celebrating Heart Month along with everyone else, I multiple-times celebrate it as a heart-disease survivor and a member of a heart-diseased family. 

Every February 11 I celebrate the anniversary of my open-heart surgery which took place in 2016 (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html). This year, I even got to travel back to Utah where my surgery was done and meet again with my surgeon. It was such a gift! 

After 9 years, and with many ups and downs, my heart has continued to change (you have probably heard the adage “once a heart patient, always a heart patient”). But despite the changes, I continue to live a full life (which is adjusted for me), and I am counting my blessings. 

February 20th is the anniversary of this very blog. I started this writing adventure on this day in 2011 out of a complete desert of news and information about Familial Hypercholesterolemia. There was nothing out there to give me a map on how to navigate this condition and how to live with it successfully - because I was determined I was going to live with it at any cost The only semblance of a map was what I had learned from my family and the prospects were not very happy - everyone in my family with FH had had hard lives, marred by lonely sick years, disabling symptoms, many complications, long, lingering suffering, and early deaths. I was determined there has to be another way. 

I wanted to document every step in my journey - all the tests, all the ups and downs of the treatments, all the successful and failed attempts at any medication so that others who I knew were out there could have a “real-life experience” reference to know what to expect through their own journeys. I figured that if I could reach at least one person like me, who was looking for their “tribe”, my job and the job of this blog is done. I have not put any advertising and any thought into making this blog more than what it has been from day one, but the handful of people that I know I have reached with my stories are such a gift to me! I thank you all for reading, and for your feedback over the years! I know (you have told me) you find a place of belonging here, and for that I am grateful. 

A year after I launched this blog, The Family Heart Foundation (then, The FH Foundation) (https://familyheart.org/) was founded and that truly threw our visibility as FH individuals into the stratosphere and amplified our voices infinitely. 

February 28th is also Rare Disease Awareness Day. I have known I have “a rare form of FH” since the age of 8 when I was first diagnosed. Officially diagnosed with HoFH at the age of 40 after my open-heart surgery, I am now officially a “rare disease individual”. 

Along with finding out that I am now in this cool crowd of “rare disease people”, finding out that I have a rare disease also helped my family: certifying that I had HoFH meant that both of my parents have FH. Until then, because we never knew about mom’s family history and because her levels were considered borderline (because they were always much lower than mine and lower than my father’s), no one ever suspected her of FH. She was 62 at the time we found out my HoFH diagnosis and she had advanced cardiovascular disease already.

This year, I also celebrate the fact that mom survived her first (that we know of) heart attack a month ago almost to today. She went into the ER with difficulty breathing. Being a lung cancer patient, everyone suspected it was her lungs, but it was in fact a blockage in her aorta that was not sending enough oxygen to her body. She needed a stent right away because the blockage was significant but given her many co-morbidities and her weakened health they advised against it. They kept her in the hospital for a week and treated her blockage with medication, then sent her back home with 6 new drugs among which a statin. She is 71. To me, she is still very young. 

FH is not a joke. It is a silent killer and left untreated and ignored it won’t ignore you, I can promise you that. There will be a time when it will speak. And it will be loud, and often not pretty. 

Below is a picture of me and mom about 6 days or so after my surgery. She came to babysit me while I convalesced but in an odd twist of fate I had to babysit her, as she got sick with the first symptoms that eventually lead to diagnosing her lung cancer. 

This year, as she had her own heart issues, I wished to God that I could have been there for her (she lives in Romania), but technology is all we had to keep us connected. 

I am grateful for the genes she gave me. Good and bad. Bad, to force me to learn how to be a fighter and not take one day for granted, and good to be stubborn and strong enough to fight that fight and overcome. 

She and I are both moving forward - scarred but more aware. Weak but still fighting. 

Everyone should celebrate heart month because, as my sister reminded me the other week, “we all die of heart disease.” It is the only organ that decides when they call it. 

Stay healthy, friends and heart warriors, and always know your numbers (cholesterol, blood pressure, pulse, and oxygen) and stay informed. I am living proof that advancements in medicine are working miracles and not only improving but also prolonging healthy lives nowadays and allowing us to build up new memories. Let’s hope this continues! 

Happy Heart Month to all! 

9 Years

When I went into my open-heart surgery, 9 years ago today, I never thought I would live to see 9 more years. My heart was in bad shape. The surgery ended up being even more involved than the plan outlined it to begin with. But more than that, I never thought I would live a full life after the good surgeon took apart my heart and stitched it back together. 

I knew I had more life in me, and I knew this surgery was not going to be the end of it. But I never imagined that 9 years later I would look back and say that I have lived a full life, either. 

But here I am. A life beyond any expectations.

A full job, all the trips I wanted to take. Buried one beloved pet. Buried one parent. Taking care of the second one from across the world. Watched my nephews turn into teenagers and young adults. Moved across the country. Zoomed over the ocean a few times, zoomed across the country for work, sometimes on my own. Medical bracelet on my right wrist, and tons of notes in my wallet that tell the world that I have a heart and a clotting condition (because of my mechanical aortic valve and because I must take Warfarin to prevent my blood from clotting and blocking the valve). Praying that whoever needs to know this information will find it. And off I go. Always cautious, always with all the risks in the back of my mind, always prepared for what would happen if I can no longer speak for myself, but I am not about to lock myself in a bubble, either. Time is always of the essence and time is short, for all of us. 

As I said 9 years ago, I say this again today: once you’re a heart patient, you are always a heart patient, but you learn to live with your limitations because there is no other way. Your limitations become your new boundaries, but you learn how to fit your dreams within those boundaries and you move on. 

There have been scares over the years. In the first couple of years, I went to urgent care when I cut my fingers in the kitchen and learned how to deal with the bleeding. I went to ER every time my blood pressure was off and I was dizzy, light-headed, or my pulse would race.

When I travel, my INR (coagulation marker) tends to go very high. I am supposed to keep it at 2.5 (for the upper limit), but it sometimes wanders off to 3.8. I am terrified I would bleed internally so I limit my physical activity for fear of bumping my head or something and I eat more greens to try to lower my INR.

I fell several times really hard. One time, I got a large open wound (as big as one whole thigh) in the muck of a dirty beach. I thought for sure I'd get some flesh-eating bacteria in my blood and the valve will have to be replaced, but it didn't happen (I drowned my wounds in hand sanitizer and alcohol which I keep in my car).

Covid just about paralyzed me with fear! With all the statistics of it damaging your heart, your lungs, and reputation of being harder on cardiac patients, I thought if I get it, it would surely kill me or at the very least land me in the ICU. But I have had it twice now (not for lack of protection as I am one of the most careful people I know - I still wear a mask in crowded places), and I have been very lucky to come out on the other end unharmed.

My valve is fine. But my heart is weakening because of my underlying cholesterol issues which continue to damage my coronary arteries. My heart muscle has thickened and I now have what they call “heart failure”. I am one of the lucky ones, though, because my ejection fraction (my "pump") is still high and strong - this is the more rare heart failure.

I learned to keep an eye on the “heart failure indicator” (called BNP, which is measured by a simple blood test) and with the proper medicine and the proper cardiologist I keep that number under control, as much as I can.

I still have neuropathy on my left hand, but there is nothing that can be done about that. I type fine with both of my hands, and sometimes I am spotty on the letters meant to be typed with my left hand, but I know to keep an eye on those and go back and fix them right away. It’s second nature now. I have some shortness of breath and the chest pains come and go, especially with exercise, extreme heat, or extreme cold. 

My blood pressure wanders upward sometimes, but most days it’s normal (staying on top of the meds is key). When I go to some place with an altitude higher than 2000 ft, my pulse races, but when I am at sea level, it’s a lazy 55-60 beats per minute. I have some dizzy spells, tinnitus, and something which I call “pixelated vision” at times (all these started happening right after my surgery and they are still here), where the image in front of me breaks up in what I can only describe as pixels. But again, all these have become old friends and we have learned to coexist. 

As always, today, I read some excerpts from my surgery report and some of my husband’s emails to my relatives and friends while I was in surgery for 12+ hours and hanging between life and death. 

More than anything, today I feel humbled. I feel lucky beyond bounds and humbled. I am not sure why God wanted me to live through this surgery and much, much more beyond. But I am looking forward every day to find out.  

Much health to everyone and as a heart warrior friend once said: “keep ticking!”

The day after my surgery, and today. 9 years is a long time.

 

 

Eight Years Later

I read a meme on the internet the other day. It said "You're only as old as your heart is." So, I must be 8.

It’s that time of the year again - February 11th ... 8 years ago today, I was dead. They made me dead. Only to bring me back to life, if I (and if they) was (were) lucky ... And lucky I was and lucky I am today, too.

Eight years ago today, I had my open-heart surgery. My big, scary, always-had-known-I-would-need-it-one-day surgery ... Every year, on this date, I skim through my operative report and I feel humbled, small, and oh, so beyond-words grateful for everything that came together to save my life and give me a new lease (renewed now for the 8th year) on life ...

I went into the surgery with 3 diagnoses. After the good man, Dr. John Mitchell from the Provo Utah Valley Hospital and his team, were done with me (after 12 and a half hours or so), they put down on paper 5 diagnoses ...

Some scary stuff! Each one of the 5 diagnoses is enough to independently kill someone. I, ever the overachiever, needed to have not one but 5 risks for cardiac death ...


But God and fate were not done with me. I do remember when going in that I told my family: I am not scared that this will kill me. I feel like there is so much more life after this for me. I feel like it’ll be hard, but I will make it ... That premonition or guess has come true ...


There has been so much life after that day ... There have been trips, and new jobs, and meeting new people, and spending time with our families and friends. There has been learning and trying new things, shooting (maybe) millions more pictures, and squeezing more kitties ... There has been building of memories, watching nephews grow and become almost young people now.


There have been some of the biggest heartaches of my life too. It’s like they prepared me for what was to come by fixing my heart to be able to take more sadness: loss of jobs, loss of friends, moved across the country, our kitty died alone when we were traveling, a parent got cancer, we buried another parent ... But my heart keeps going ...


Just like the good doctor said in one of the days after the surgery while I was still in the hospital: it was “up and at them after I left the hospital”. I guess I never quite felt like “up and at ‘em” to me, exactly (I felt as slow as a snail and as weak as a feather), but compared to that day, when I was practically dead, with the heart-lung machine breathing and beating for me, it must have felt like “up and at ‘em” even if all I did was little as getting out of bed in the morning ...


But I have been lucky to do much more than that ...


After learning my new routine in the first couple of years, I have been able to have a new life, a different life than before, but still a good one.


The operation (or, as you can see from the operative report excerpt above the “operations”) did change my entire life’s routine: the anticoagulant forces me to manage my food even more closely than I normally do, it also has me OCD paranoid about measuring my INR (blood “thickness” levels) weekly and I never leave the house for more than a week without my INR machine; I get tired easier than before, still; I have learned how to live with permanent neuropathy in my left arm which still feels like my hand is permanently stuck in a bucket of ice; my chest still feels different than ever before, including my spine and ribs - it cramps and it hurts at certain times; my medical wires left in my chest forever after the surgery still poke into my chest wall at times (and I have not figured out why and when they act out); my blood pressure has been on a new and more noisy roller coaster than ever before, my heart muscle is stiffer and it needs extra meds to relax ... and I could go on and on ... Living through increased inflammation and through several years of Covid that threatened to kill people like me, with a cardiac condition and with high cholesterol, has meant yet a new way of life. A new lesson in living this new, changed life ...


Yes, things have changed. But what I now know for sure is that we are adaptable. We learn to grow around the boulders put in our path, and still are able to shoot towards the skies, kicking and screaming ...


I have a much better understanding of limitations and of giving up things to feel “normal” ... But I also cherish every second of every accomplishment of just going through the day and the night and waking up to a new morning day after day ... There is no price I can place on this blessing and this gift called life ...

First day after the surgery, in the ICU. And 8 years later ...

It’s Been 7 Years!

There is something magical about number 7. It’s not my number (that would be 9), but it’s magical. I am not going to get into all the symbols of number 7 in all the cultures and throughout history. This is not about numerology. This is about the fact that 7 years ago today I got a new heart and a new lease on life. This is about reaching this milestone and being grateful.

7 years ago, in a hospital in the obscure (to those outside of the US) state of Utah, in a small town of barely over 100,000 people called Provo, I was getting my heart stopped, cut open, and I was having my aorta and aortic valve replaced with man-made parts. Then, I was having four bypass surgeries around four major coronary arteries that were between 90-99% blocked, and several endarterectomies to clean out the incredibly heavy amount of plaque that my 40 year-old body had accumulated due to this little known rare disease called Homozygous Familial Hypercholesterolemia. Are you awake yet?! 

I documented my surgical journey of 8 days in the hospital here (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html), for those who want all the details. Several years of cardiac rehab followed, all with ups and downs. This entry, is about the lessons I have learned in all the years that followed that day.

After that massive surgery, along with my body not feeling like my body anymore for a while,  several things transpired. I am guessing if you ever go through a similar journey, you might encounter these learnings, too, so I am sharing:

1. You might shamelessly, unapologetically fall in (platonic, respectful) love with your surgeon. My own surgeon reminded me that it was not only him, but the whole team (three surgeons and three cardiology surgical PAs) that gave me the miracle of a better-working heart, but I know he was the leader of the pack. The mastermind. The true artist. The guy with all the guts to reshape a heart so sick in just one, long (13+ hours) surgery, just because he made a commitment to himself that “he never wants to look at my heart again”. He made sure I never have to have that surgery more than once. How can you fall in love with the person who mended your broken heart? Literally?! I do not know how.

2. Even with a fixed heart, you can still have a heart attack - as my body proved just a week (7 days!) after he closed me up. This added insult to injury, let me tell you, but I was glad I was still in the hospital for it, with all the specialists around me. I survived that, too, although my heart is still reeling from the damage that attack did to my left ventricle.

3. You will re-learn your heart, its new antics, and your whole body after a shake-up like this! You will have new sensations in your chest, new symptoms of chest pain and dizziness, new types and intensities of tinnitus, and so much more! Nothing will feel the same as before the surgery. And it’ll take a couple of ER visits to learn that a heart palpitation might not always mean that you’re having another heart attack - sometimes, it’s just your blood pressure being low and asking for you to lay low for a spell! And the ER staff will give you a bag of salty chips to get the pressure back up and send you home. True story! 

4. You will learn that Coumadin will not kill you by making you bleed out! You’ll manage it, by fits and starts, and you will become begrudging roommates in this newly renovated body of yours. In the end, it’ll become like the rascal little brother that you sometimes love (it keeps you alive by preventing your new mechanical valve from clotting), but it annoys you sometimes when you can’t get a handle on what it decides to do one day (like make your INR twice as high as it’s supposed to be just because you exercised too much one week or your dad passed and you’re under too much stress). 

5. You will really learn the truth about what initially will feel like a cheesy cliche that “once a heart patient, you’re always be a heart patient.” This is, scout’s honor, the honest truth! There is no “cure” from heart disease, really. There is managing it, staying on top of it, but there is no “forget about it. This was in the past.” The disease will stay with you and it will morph into something else every year. Every month. Every day, even! There have been some big wins, for sure: my valve is very healthy and not leaking; my ejection fraction is healthy, around 50%. But there have been setbacks too: my smaller arteries which were too small for bypasses or endarterectomies have gotten sicker and possibly more clogged and continued to damage my heart muscle. My heart muscle, especially my left ventricle, is now stiff and my heart is in the beginning stages of heart failure (with preserved ejection fraction, which is the more rare and harder to treat version, so I have learned in the past year). The annual tests, and the quarterly cardiology visits continue and will continue for the foreseeable future. 7 years later. Indeed, I will stay a heart patient as long as I live. Some old symptoms are here, but changed. And new symptoms have popped up. But this is you now. And this is your reality. And this is OK. Have gun, will travel! You have the tools, the knowledge and the experience, and most importantly: your heart is still ticking - you learn to trust and move on. Being a patient is far better (sometimes), than being dead! And having a disease you can manage is a blessing! You will learn this to be true. I sure, we all want to be fully healthy. But if you were to have a disease, better have one you can manage.

6. You will learn how to be happy and feel safe in this body. Broken, scarred and winded, you will learn what it wants and move on. Take that trip you always wanted (I always wanted to go on a cruise. I went on two during these past 7 years), climb that mountain that you think it’s too much (I remember how I felt like I was going to die before I reached the top of Ensign Peak in Salk Lake City, but it felt like I conquered the world when reaching the top and taking in the view of the Salt Lake and the valley), fly across the world again, even alone. It’ll be scary, but you’ll do it. I (along with millions like me) had the unique misfortune to hit the Covid years during these last 7 years and that “stole” a couple of years of my life. But I learned how to travel locally and how to be careful and still found some joy in the temptations that were close-by. The world is beautiful even outside your front door. And I am glad to see another day to enjoy it.

7. You will learn how to advocate for yourself even more than before. There will be a time when you might have to change doctors - because your original “dream team” that first diagnosed you, babied you before and after your surgery won’t be available - because you’ll move or they’ll retire. The new people won’t listen to you, will assume you don’t know much about medicine or about what really happened during that surgery - but you’ll have to learn that your voice carries and you can always scream louder. You will make them listen, or fire them. And they will, eventually, keep you alive. But you will know that the force is in your lungs. 

8. You will learn to be humble. First off, you will learn to love your body again and thank it for carrying you through another day. I used to refer to my heart after surgery as "oh, my stupid heart", and I don't do that anymore! That was insulting to it. It was demeaning. Now, I cherish it and thank it for every beat, every single second. I bow to it with humility! It does such hard work and it's been through hell. You will learn the miracle of good days, of the days when you don’t feel like an elephant is taking a seat on your sternum, and you will feel grateful to the miracle of medicine that’s helping you through. 

9. You will absolutely become some kind of a germaphobe! No doubt about it! Bacteria and viruses will scare the crap out of you, especially when you read about folks getting sick with endocarditis and having the valve replacement surgery redone because no antibiotics worked to cure the heart infection! It will scare you witless, I guarantee it! 

10. You will learn abbreviations and acronyms that you never thought you’d learn in your life: OM, LAD, CVD, CAD, AHA, EF, HFpEF or HFrEF. No dictionary needed here!

If there is just ONE thing that I could share about how you make it through the hell of open-heart-surgery and heart disease and back is this: don't think too much of the future. Not necessarily in deep, fine details, anyway. Give yourself bite-size milestones to reach every day: today, you might focus on breathing better; tomorrow - on eating more properly; the following day on walking a few feet further. Whatever it is. Focus and do it with all your might, energy and heart. Keep moving forward through your everyday milestones and one day, you'll look back and be amazed at what you've been through, how much you've accomplished, and how strong you are as a result. Telling yourself "I want to climb Mount Everest 6 months after my surgery!" when you still have tubes going through your ribs and you can't take one breath without screaming in pain is nothing but demoralizing. Tell yourself you will kill that tube beast soon; focus on learning how to breathe with it; allow you body to heal and get strong by paying attention to it every day, and Everest will wait for you at the end of that journey. I promise it!

I think the one thing most dear to me that I cherish today is that I am still here. Today, while I am thinking of all the hardships I have overcome with gratitude, I am definitely not thinking about the ones that still lie ahead of me. If I do the work of today, I know I'll be as prepared as I can be for tomorrow's challenges. I have to trust that. Today, I am mostly taking a minute to be grateful. Today, I am thanking my team, my family (my husband is my Guardian Angel, my nurse, my psychologist and so much more!), God, and my body for being here for me through it all. To paraphrase Anne Lamott, "life is such a show-off".

Again, like I said above: I am humble. I know there are forces bigger than me at play. I am merely a raft on the angry ocean, being pulled away, and thrown ashore, but still intact. Damaged, and full of weeds, but still afloat. I’ll cheer to this and hope for at least 7 more "magical" years! 

A journey in time: from the day after the surgery, going home after the heart attack, happy in cardiac rehab, with my amazing surgeon, Dr. John Mitchell, at the top of Ensign Peak a year later and today - 7 years later! (you may click the picture for a larger view)