Alina's Posts

10. TEN Today's the day. It's been 10 years today since my open-heart surgery. The reason for the open heart was to replace my severely stenotic aortic valve with an On-X valve. The operation ended up being infinitely more complex than that (Dacron grafting of the ascending aorta, aortic arch endarterectomy and aneurism repair, endarterectomy and bypass grafting of four major arteries, including the LAD), but the reason that prompted the emergency surgery was the dire state of my aortic valve at the time. For safe measure, I had a heart attack while still in the hospital a week later. This knocked down my ejection fraction even lower. The pictures to the left are the night after the surgery and the next day. All I remember when I first came to in the ICU is all nurses telling me I will feel like I got hit by a Mack truck. The one on the right was a week ago. My heart disease, including my valve stenosis, is caused by a genetic disease called Homozygous Familial Hypercholesterolemia (HoFH). The bottom line is: high cholesterol clogs up your arteries and causes stenoses, aneurisms, and damaged valves.What a journey it has been! The days and weeks after the surgery are all a blur. I know I went to cardio PT, I know I went to many doctors' appointments, I know I was incredibly tired. Every day I learned something new about my heart, about my new body. Every day was a lesson in resilience and my body showed me that I can move on ... I am usually very confident and trust myself, but this experience was a huge lesson in humility. I did feel like some days I got the bear, but I definitely had days when the bear got me ... My surgeon swore that he made my heart good for "a looong time". I was dubious. But today, I feel like he might have been right. I have taken one day at a time and never rushed. You know how when you dance, there is one person that leads? I let my heart lead. I follow. And it's been a good little partner. Although I have developed complications with my heart disease because of HoFH (diastolic disfunction, worsening of my tachycardia, enlarged left atrium, and heart failure with preserved ejection fraction to name the main ones), my valve is doing great! It is as quiet as it's ever been, and all the cardiologists I have seen since then tell me it sounds great and there is no regurgitation. Everything else so far can be controlled with medications. For this, I am grateful. I have been scared about things like taking too much Coumadin, or not enough, about getting infections (especially during Covid, I was a super hermit), about every new symptoms (like severe shortness of breath, chronic cough, pronounced dizziness), the neuropathy I got with the surgery in my left hand is still there, 10 years later - but ... I am here to tell you that I also have lived as full of a life as anyone else I know - maybe even fuller than some perfectly healthy people I know. I only went to the ER twice for my heart and that was during the first year, when I was not sure about what was a serious symptom and what was normal development from the surgery trauma. Outside of that, I go for my check-ups (twice a year now), get a heart echo every year, a carotid and an abdominal aorta CT also every year, pack my INR meter on every trip that is longer than a week, take my pills daily (I take 4 medications for my heart and 4 for my cholesterol), and keep moving on. I have traveled all over the US, Eastern Canada, Eastern Europe and have also been to Central America and Africa. I am not nervous that the heart or the stenoses or the clots might kill me every minute anymore - I am just grateful that I get to fill my minutes with life. I honestly think this is part of the therapy. I have learned that being knocked down is just as much a certainty as our ability to get up and keep going. We hurt, we get fixed, and we adapt to the new "us". With an amazingly brilliant surgeon (who is now deservingly retired) and the stoic, faithful support of my husband, with some lucky resilient genes and typical Aries stubbornness, my journey continues. And I, too, hope that it will be for "a looong time". Oftentimes I have had to fight extra hard to get a doctor to listen to me, but if they didn't, I found another one. My best advice is to find the doctors who listen and see you for who you are. Those who know your case, not just the textbook. Never ever give up. Your body is an amazing machine with a natural instinct to exist. I have been lucky, like many of you, to have a disease that does have a way of management - I have learned every day how to live in this way. I am living proof that you can. If you're at the beginning of this journey and scared, please know that this is perfectly normal but also know that, for the most part, barring strange abnormalities, this is survivable. Celebrate your journeys and your lives! You will learn a lot about yourselves. Try to find the humor and the peace in every day. I am promising you - they are there. Much health, everyone! And go get that bear! PS: special shout out to the Class of 2015-2016! I hope everyone is doing well! 💜

I joined this wonderful platform of support and camaraderie (the HVS site) put together so generously by Adam in 2016. The 2015-2016 class of folks who were traveling this journey with me supported each other through this amazingly difficult journey of heart-valve surgery. We all had a unique story and singular outcomes. But our desire to connect and support each other was the same for all of us. 9 years later, I and some of the people I met here still talk periodically and still support one another as the heart disease journey never stops. Today, I had the amazing privilege of meeting one of my HVS friends in person while visiting family in Michigan. These in-person meetings are my favorite. They are such a gift! Thank you, Wanda for meeting me and thank you for the years of friendship! Thank you, Adam, for making this friendship possible!Good luck and good health to everyone on your own journeys!