Alina's Journal

Happy Valve Disease Awareness Day to all of you, warriors! May you always fight the good fights and always find health and hope in all your journeys! Thank you all for sharing your stories with all of us!

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!

Happy Heart Valve Disease Awareness Day to everyone here! To every warrior and everyone standing by one! Thank you, Adam, for putting together this safe space for all of us! 

February 2025 - Provo, UT - 9 years ago today (February 6, 2016 picture on the left), my husband and I went to an early Valentine's Day celebration because I was scheduled to have open-heart surgery on February 11, and we knew it would be a 'different' Valentine's Day that year. Today, we both came back to Provo for a visit and met with my amazing, class-act of a surgeon who not only remembers me but gave me some lip about why I got rid of my hair and talked to us for an hour about everything. And oh yeah, also went over my recent tests and gave me a cardio exam too. Later this year, my surgeon will retire to NC which is where I moved to a year after the surgery. What are the chances?? The world is small. Love these two men with all of my heart (literally).
They are the reason I am still standing.9 years later, the good doctor listened to my heart and he said: "That is a remarkable valve, right there!" He would know.
Much health to all of you! And have faith!

It’s been 8 years today since my big OHS (which also included an aortic valve replacement). Every year, I try to come here on this day to thank Adam and all of you for this amazing place that got me through every second of that challenging journey! 

For those who are scared facing an open-heart or valve replacement, I wish you all strength and the best of luck in having a good team to help you through. Know that it’s not impossible to come out on the other side and still find a lot of life to live. 

For those who have already been through it all, keep going! It’ll only make you stronger! 

Thank you, all those who were there for me 8 years ago and who have been ever since! 

These are my thoughts on my anniversary day, today: http://livingwithfh.blogspot.com/2024/02/eight-years-later.html

💕 Keep on ticking, everyone! 💕

About a week or so ago, my husband and I flew to Phoenix, AZ for a short vacation. This allowed me to finally meet Kate who I had met on this wonderful site back in 2016 when we were both going through our heart valve surgeries.
I don't think there is any amount of gratitude you can express for being able to share what you're going through with someone who is going through a similar path. We found strength and hope in each other and our friendship endured over the years. Thank you, Kate, for sharing your story and being there for me!
And thank you, Adam, for making this possible!
Much health!

I cannot believe it's been seven years today since my open-heart surgery. What a ride! 
If you want to read my entire journey, please see this older page which I no longer can access (https://www.heart-valve-surgery.com/journals/user/alinafh). 
I have not written here in a long time, although I do follow this wonderful site somewhat regularly. I can still relate to every one of the stories I read and I get strength and encouragement when I read your success stories. Thank you all for sharing. 
I sometimes read about folks wondering if they should have their valves replaced. I am no doctor, of course, but if it comes to this and you get a doctor’s (or multiple doctors’) opinion that any of the valves needs to be replaced - read as much as you can about it, stay positive and trust that you will have a better (perhaps longer) life if you do get through with the surgery. 
The surgery was scary, there is no denying it, but my heart is in a much better place today because my aortic valve is as good as new! Every year, I get a heart echo and the cardiologist always says “Well, your valve is great!” - sure, there are other things wrong with my heart but they have nothing to do with the valve. I am happy for that!
I took a while to research what valve to get (and you should too). I did not want a mechanical valve, because I was afraid I would bleed out from taking Coumadin or that my blood would clot and close up my valve for good.. But I hated having this surgery done twice even more. 
I was terrified of Coumadin after my aortic valve replacement (I have an On-X mechanical aortic valve), and I am grinning as I write this today, as I have managed to live with it quite well and I am no longer scared of Coumadin at all. I have had oral surgery and another surgery in my neck and we worked around Coumadin - all the medical professionals I have worked with are very familiar with working with Coumadin patients. 
Sure, some weeks the numbers jump (either too low or too high), but I know that it takes more than one test to have a problem. I do test often though, and most of the time I am in my range. I was also afraid that the valve might fail or get infected. I have learned how to decrease my exposure to germs and viruses and I have avoided, thank goodness, any infection that could damage the heart. 

Those were my biggest two fears 7 years ago, when I was out of the surgery. 
Today, as I live as a perpetual heart patient, I am comfortable in my (new) body, and I do all the things I want to do. I have multiple heart problems, outside the valve, but I honestly think because of a strong valve and a healthy aorta my heart has been able to work better and has allowed me a full life. I can’t run a marathon, but then I never wanted to anyway. 
If I didn’t get that surgery, I am not sure I would have gotten 7 more years. 
I wish everyone a smooth journey if you’re now starting; a strong and steady recovery if you’re on “the other side”, and a full, healthy life ever after! 
Amazing things are possible and life still goes on after open-heart surgery! Have faith and trust that your body can take it! 
PS: I wrote more about my thoughts today in my blog, Living with FH and Heart Disease (​​http://livingwithfh.blogspot.com/2023/02/its-been-7-years.html), if you are interested.

Much health to everyone!

Before sharing with you all my thoughts at my six-year anniversary from OHS, I just wanted to say that if you are a member of this site and you are going through valve surgery, you are in the right place. This site saved my morale and improved my knowledge tremendously while going through my own heart surgery, to say nothing of the fact that it gave me the community I sorely needed at the time. I still visit it occasionally, but I am not as active as I used to be, although I still learn a lot from all the warriors out there and I admire you all! -------------------------------------------------------------------------------------------------------------------------------------- It’s hard to believe that it’s been 6 years since my open-heart surgery. In some ways, that seems like a blink of an eye. A 6 year old would barely be even fit to start real school yet! But in the measurement of the time that open-heart surgeries recoveries are measured by, 6 years seems like a lifetime. I hated having such a huge surgery in February - my least favorite month. The month that, historically, has gotten people sick and killed among my loved ones. A cruel, cold, dark (albeit short) month that’s not always been kind to me. But it had to be in February, because at the end of January, the month before, they found two arteries blocked in my heart (the LAD was at 99%, another one - an OM - was at 90%). The aortic valve was failing, in severe stenosis, and the aortic arch had an aneurysm. The cardiologist wanted the surgery done even sooner, if he could get me and the surgeon aligned on a date. I documented my surgery day, step by step, here: https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html. And the day before the surgery (the “pre-op” day), here: https://livingwithfh.blogspot.com/2016/02/the-day-before-open-heart-surgery.html If you ever have time to read it all, you will see that what was said the day before, what they prepared me for, mostly came true, but there were a few surprises. When I came out of the surgery, everyone who came into my room, ICU nurses, several surgeons who assisted me during the actual surgery (12+ hours), all the three PAs, breathing and physical therapists, and even my rock, my husband - all of them reminded me that I “had just been hit by a Mack truck.” You cannot possibly be very well hit by a Mack truck and expect every single thing to go “according to plan”. You cannot be hit by a Mack truck and plan for it, step by step, then hold God and the world accountable for every one of those steps. You are bound to be surprised, and thrown off the rails, and, oh, yeah, even shocked. The day of the surgery was a pretty peaceful day for me, consciously. Yes, my body went through hell; yes, it got killed, drained from all the blood, frozen for more than half an hour, and was brought back to life. But, mercifully, I don’t remember any of it. Sometimes I hear about people remembering bright lights and seeing their lives flash before their eyes, or floating above their bodies in the OR, but I experienced none of this. As peaceful as that day was, the days in the hospital that followed were intense! Just full of emotions, but more than anything full of new sensations, of discovering new parts of my body I didn’t know I had or parts that I didn’t know could hurt - my skin hurt. I could not wear ribbed tees or feel the creases in my hospital bed sheet because my skin felt like it was completely burnt ... The two days after the surgery, it took all I had to just stand up, held up by the nurses, beside my bed. Forget walking and balancing on my own. That didn’t come till it was almost time to go home, more than a week later ... I don’t think I ever walked during the hospital stay without holding on to the back of a wheel chair. And the breathing! Oh, my word! I could not breathe! I could not speak, I’d whisper. They wanted me to blow into this plastic tube and felt like that was my last breath, there it went into that stupid tube. At the end of that effort they’d all look disappointed because I never could blow strong enough for them! It was horrible. My lungs took such a beating! Even after three months of recovery, when I went back to work finally, my coworkers were saying that they could never believe I could speak so quietly. I don’t have a big voice to begin with but after the surgery, it was nothing but a whisper. Once I got home, the life “after OHS”, the life on my own, without hospital care and around-the-clock medical staff explaining every new symptom, started. I was terrified! Again, I had to relearn my body! I had to learn how to sleep again because no position felt comfortable. No bed or chair. I had to learn how to cough and laugh and sneeze again so as not to let my chest come loose ... I had to build an appetite again although nothing sounded good. I had lost 10% of my body weight in that surgery and I didn’t have that much to lose to begin with: I was 95 lbs at my lightest. I went through ER scares when I became too dizzy and light-headed, or when I cut my finger chopping veggies and was scared that the Coumadin might make me bleed forever ... I went through years (not even sure that’s even over yet!) of being scared that my INR will be too high (I’ll bleed to death) or too low (my mechanical valve would clot and I’d die of an embolism or something). Although I manage it better than ever before now, it is still a challenge to keep it tightly in my range, especially when seasons change or when I travel and add unusual, unfamiliar stress to my daily life. I went to physical therapy twice, first to build strength in my upper body, right after surgery, and almost two years later to build stamina to be able to walk for a mile at a time without my chest hurting too much and without feeling like I was going to faint from light-headedness. I stopped traveling the year of the surgery because I was afraid of getting an infection on airplanes. That was when my immunity was still fighting to heal my heart. I stopped traveling again for the past two years because being a cardiac patient with very high cholesterol for the rest of my life puts me in the “high risk” group for people who might get more severe or possibly lethal Covid. I do get out some and I meet with friends and even saw family across the country and in Canada last year. But I limit who I see and if I can’t meet people mostly outside I put it off for later. I am still nervous to fly. Maybe this coming summer ... We’ll see ... As much as I hate putting my life on hold, going through that surgery to rebuild my heart, with all its complexities, and then going through years of recovery to function somewhat normally again and being rewarded with a good life, all things considered, seems like the most precious gift. I don’t want to throw myself willingly at risks that are not absolutely necessary for survival, to endanger this beautiful gift. So, I’d rather wait out the pandemic, or not expose myself to other sources of more sickness or things that could damage my heart (or valve) again. In the whole scheme of things, it’s a small sacrifice. I’ll have to say this though: my journey has been more lucky, more blessed than I have ever hoped for. So much more blessed than others’ paths - although there is no comparing journeys here. Everyone’s path is different and everyone feels pain and blessings at different temperatures. However, I can say, I am lucky to not have had too many complications in these past 6 years of renewed life. I wish I can tell you that the minute you walk out of that hospital after your heart surgery you’ll never look back and you’ll be as good as new with not a worry in the world about your health. But I’d be lying. You will never be the same person you were before. In some ways you’ll be worse and in some ways you’ll be better. In some other ways, you’ll be much, much better. In almost all the ways, you’ll just be different. A different “you” that you’ll need to get reacquainted with. You’ll maybe be more hopeful, more appreciative of your health, with more respect for what your body can do and for its ability to miraculously heal, even after being hit by that Mack truck! I can tell you, though, this, for myself: I have zero regrets for anything related to this surgery. There has been no question in my mind that I needed this surgery. This was not elective: this was a surgery to save my life. My aortic valve had only a 0.49 cm opening, it was almost closed. My arteries were stenotic. My chest pain was constant. My ability to walk and exercise was very much reduced. I am very grateful that for my condition there was a course of action. There are so many afflictions out there that have no cure. So many diseases that come with a stopwatch that is set to expire in months, some in weeks or days. This was not the case with my heart disease: there was something they could do. I am grateful for that. I am also grateful for my team of doctors in Provo, Utah, at the Utah Valley Regional Medical Center. My cardiologist and my surgeon are my heroes, my true soldiers who fought as hard as me to get me back to “normal”. But the other members of the team, the PAs, the other surgeons, the medical staff, the technicians, and then the cardiologist I have had in North Carolina, after I moved, not to mention my family, my husband first and foremost (who tied my shoes and put on my socks after I got out of the hospital and when I could not bend over; who clipped my nails because the neuropathy in my hands could not work the clippers), my sister who is my biggest cheerleader - they all made me who I am today, when it comes to my heart and overall health. I have noticed that I can walk further and faster than ever before and that my stamina has improved little by little every year. I can now walk even in cold temperatures (30s-40s) or hot ones (80s) and can go longer than before. I walked a mile and a quarter last night in low-50s temperatures (with wind in my face that made it feel like the 40s) without even breaking a sweat. I used to be out of breath walking from my car to my office in 40F temperature before my surgery. Inclines are still a challenge to this day. I live in NC now and boy, there is not one street that’s not on some sort of a hill. Day to day, the progress you notice might be imperceptible, but when you look back at all these years, and compare what you could do then and what you can now, it’s pretty amazing ... A month ago my INR was 3.1 (too high since my range stops at 2.5). This past weekend it was 1.7 (within range but a little too close to my bottom of 1.5 for comfort). But I have learned how to live with this ever-swinging pendulum. I have bought a CoaguChek machine that measures your INR and I check it myself as many times a week as I want to just to know how to adjust my food accordingly. I usually check it once a week if no changes in diet, exercise, or stress level have occurred. I take it with me when I travel because it’s harder to plan for your food when you’re not home. This brings me a lot of peace of mind. I have never, not once, regretted my choice of valve. It took sleepless days of reading just about everything there was to read on the internet about all the possible valve options that I had and when I found the On-X mechanical valve and learned about the benefits and came to peace about living on Coumadin (if you ever do!), I never looked back. I love knowing that at least if everything goes according to plan and I avoid infections and clots, my valve will outlive me and I won’t have to have my chest cracked open again. At least not for the valve, anyway. I got all sorts of other “work” done with my OHS: I had a quadruple by-pass, as well as endarterectomy of all the four arteries that they bypassed, and a new, grafted, ascending aorta. I also had an aneurism repair and additional endarterectomy of my aortic arch ... I get a yearly echo for my heart and both the current cardiologist and the surgeon read it and so far it all checks out, thank goodness. My ejection fraction is lower than before the surgery, but at 55% is still pretty good, considering. I still have high blood pressure, but we try to keep it under control with medication and exercise. The coronary artery damage that I might still have in my heart is believed to be in my very small vessels (which cannot be properly diagnosed with an echo; an angiogram is required for that and I am not due for a new one for another 3 years or so, barring any new symptoms, like acute chest pain, dizziness, collapse, etc). As long as I keep active, the belief is that I’ll help my body create new blood vessels that would build a natural bypass for any vessel that might clog in the future ... So far, every year I have been able to exercise more and more ... I am not a marathon runner, far from it, but my stamina has improved so much! I look back on every anniversary and thank God, life, and the universe for the inspiration they all had to keep me in the light that fateful (in a good way!) day of February 11, 2016. Every day on this day, it’s my “other” birthday and I am grateful when I add another one to my heart age. I think my sister once said: “you are almost 47 in human years, but your heart is only 6.” That’s right! My heart, the engine of my body, is barely even old enough to go to school! Oh, the possibilities! Maybe having my Heart Day during Heart Month (February) was not a coincidence after all. I have made peace with that. Happy Heart Month to all the heart warriors out there! Embrace your body, embrace your heart and keep fighting the good fight. It’s always a good one when you keep that engine running! Much health to everyone! If you’d like to see my journey in pictures from my heart surgery day to today, you can do so here: https://wanderworldpics.shutterfly.com/22602.