Heart disease is not something to muck about with ... Sometimes, you live with it for a very long time, and sometimes you have no idea you have it until it’s too late ... The silent killer as they say ...
I knew I would have heart disease one day because of my FH diagnosis at the age of 8, and because my doctors were savvy enough to know the potential damage that the cholesterol was causing my arteries would eventually end me in the operating room. If I was lucky.
Because I knew the risk, I could watch my heart over time and see the progress of the disease before it was too late to do anything about it, and luckily, before it caused an event like a heart attack or cardiac stop ...
I met many heart patients on my journey with FH and heart disease. I have met so many special women, especially, that have gone through so much more than me. I feel connected through some invisible thread with all of them. We are all different and all alike in some ways. And in many ways, we get each other at a deeper level.
The one thing that you’ll learn when you’re an open-heart surgery patient is that no two journeys are alike with this disease and with surgery. We all have different thresholds of pain, we all have slightly different surgeries, and we all have different anatomys. Two heart-valve surgeries are never the same: mechanical valve vs bio valve; aortic valve vs mitral valve; one valve surgery, vs multiple valve surgeries; valve replacement vs valve repair; bypass surgery vs endarterectomy; stent implantation vs bypass surgery; aneurysm repair vs aorta transplant ...
Surgeries can last 2-3 hours or 10-13 hours. You can come in and out of anesthesia or you can feel like you took the longest nap of your life and not remember a thing. Some people see “a bright light” while they are on the heart pump machine, others see nothing. Just peaceful sleeping ... Some feel like they left their bodies and are looking down on their surgeons from the ceiling, other patients think this is all imagination and too many horror movies watched...
How we heal, how fast and how well, and what life-long side effects we are left with (because there will always be those) are all different from one person to another, too ...
We are taught, as heart patients, to never look at others’ progress in recovery and wish we were them. To just focus on us, to be in tune with our own bodies, to listen to them, and to focus on getting our own bodies better ...
And yet, despite so many differences and nuances because we are all different people, there are so many similarities between heart patients ... The scare, the dread of being opened up, the pain, whatever its level, the up and downs in the ICU, the nightmares, the confusion, the low pulse followed by tachycardia, the high blood pressure followed by deadly low numbers, the lung damage, the dreaded spirometer challenge (Gosh, I hated that thing!!), the experimenting with pain killers (one minute you want to OD on them they are so good for pain, the next you want nothing to do with them ‘cause they make you lethargic or make you throw up) - I have experienced all these and so have many of my heart patient friends ...
I have been lucky to be close to my friend Kate, that I met through the website of a heart valve surgery support group during my surgery and the subsequent recovery, 9 years ago. We are of similar ages, and have known for a long time about our heart disease. We have been pen pals (do people even know what that means anymore?) ever since. We exchange notes and horror stories about doctors, frustrations with our recoveries, and complications from our continuous disease, but also successes and small victories (that are monumental to us).
Kate is also my hero and my role model because she has had open-heart surgery now three times ... She just got out of her third one, to replace both her aortic and mitral valves. Although I have coronary artery disease and valve disease and she has multiple valve disease (this is the difference), our journeys have been very, very similar in a lot of striking ways (this is where we are alike).
She just left the hospital today, after 12 days for this third surgery and she sent me a picture of her leaving the hospital. My heart jumped when I saw it. Because this was almost exactly the picture my husband took of me when I was leaving my hospital after my surgery 9 years ago. The resemblance simply made my heart skip a beat ... And all those similarities between Kate’s and my journey came rushing back ...
All I could think about is: WOW! This is THE picture! This is the picture one takes after they survive the worst - hugging the heart pillow and smiling, high on the notion that we are still walking the earth with foreign materials in our chests forever and God knows what else ahead of us. Smiling because we’re alive. Because we cannot believe we’re breathing and on “the other side”.
I am sure everyone will see something different in these pictures. But what I see is all the similarities that bring us closer together as time goes by. That heart pillow alone and how we're clutching to it - it is your survival security blanket; it helps you breathe without pain and the only thing that stabilizes your (still) very "crunchy" chest that feels like puzzle pieces not yet glued together.
Kate, too, like me, knew she had bad valves quite early in her life, in her late teens. And she stuck with it, too, and she watched it and she did something about it before it did something more awful to her ...
I also see in this picture both of us surviving despite the many shitty prognoses; surviving despite the inability to tell yourself one more time “it’s gonna hurt; it’s gonna be hell, but I gotta do it to live to see another sunset and get another kiss from my cat (or dog), to live to jump on another plane one day to see my earthly paradise (we all have one), far, far away, to make love one more time; gotta do it!” ...
We’re both still weak in these pictures, we’re in the passenger seats, we relinquished the reins, we are being cared for (how lucky is that alone?), and we are weak-looking, but there is fire behind those eyes and there is resilience and there is grit.
I am sure she’ll have stories to tell after her third visit in there, going through the deep, deep darkness of literally being put to death and then brought back again. This is how I feel when I look back on my surgery: they literally stop your heart that has no blood going through it for a while, and then they magically make it beat again. The next thing you know, you walk out of the hospital and you go home with a new lease on life ... Sounds simple, and trust me: both for Kate and I, this journey from when you go in till you get out felt like at least 10 years ... But that smile says it all ...
When it comes to life’s challenges, open-heart surgeries are quite up there in kick-butt-ness, in my book. Every surgery has a risk, sure. Every paper cut can give you a lethal blood infection. But there are few things in life for which you have to die (like open-heart surgery) to get better... And we did it willingly. Thank goodness we knew ahead of time that we needed it ... And thank goodness that for heart disease there are ways to manage it.
I can’t think of anything more humbling than being sick and coming back to life. I can’t think of a more character-building experience than going through what Kate has gone through, not once but three times ... She is not 50 yet ...
The title of this blog belongs to Kate, hence the quotes - this is what she said when she saw these pictures: “Heart sisters foreva”. I could not agree more, and I could not feel more honored and proud to have her say that ... We may be different people, we may live 2000 miles apart, but we have this invisible bond that connects us across miles and time zones, and although every muscle hurts different for her and I, our hearts still beat to keep us alive, despite the different kinds of ordeals that they have endured, despite the different number of times they went silent. Our hearts are ultimately stitched up and broken just the same. And that will connect our lives and our stories forever ...
Speedy recovery, my favorite warrior and welcome home! And I’ll leave you with the advice my own surgeon gave me 9 years ago, the day after my surgery: “It’s up and at ‘em from here out!” I have no doubt about it!
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