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:
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.
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.
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!
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).
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.
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.
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.
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.
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!
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!
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