After 6 Years

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. 

February 11: 2016 (right before they rolled me into the OR) - 2022

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.