Cholesterol Values after Covid-19

(Updated on January, 2023 - see update at the end of the entry)

Although I have read many articles online about how Covid-19 seems to reduce cholesterol levels, my family and I have found quite the opposite. 

Of course, like everything with Covid: where is the truth? Where is the evidence? There is still a long road till we know for sure what this disease does to our bodies. Once we’ve had it, we’re in the long haul of finding out how ultimately it will affect us. This, I firmly believe. 

Below are my numbers before and after Covid: I had Covid in August 2022. Notice that the values (particularly of the total and LDL cholesterols) jumped about 40 points from February to September - about a month after I tested negative. 

What is even more interesting is my sister’s story: she had Covid in April 2022. Her numbers (for the total and LDL cholesterols) between November 2021 and May 2022 also increased by about 40 points. However, what is even stranger is that her doctor doubled the dose of her statin in November. So, she took twice the amount of Lipitor (40mg instead of 20mg) that she ever took before, and yet, after Covid, her numbers went up, as shown in this table:

Both of us changed nothing else about our medication or lifestyle. Outside the fact that during Covid both of us were incredibly tired and we could not exercise as much as we wanted to, nothing else changed. And usually, for both us, diet or exercise don’t make much of a difference in the numbers as we both have FH. We’re both petite and with a normal BMI. 

I have not seen numbers as high as these for me for two years now, since before I added Nexletol (or Bempedoic Acid) to my drug regimen. 

I asked my cardiologist whether the increase in the cholesterol numbers could be from Covid, given no other changes or factors. He said “it might be, but if the change is as a result of having had Covid, the change should be temporary and the numbers should drop.” - there are so many “should”s and “might”s and “if”s in this sentence, aren’t there?! 

It’s all a guessing game for now. Time will tell - that is where we’re standing right now because like I mentioned in the beginning: there is little to no research on this (that I am aware). 

Now, it would be interesting to know whether those cases that the media is reporting where the cholesterol levels did go down were for people without FH. I have so many questions. For now, I can only report what I have seen in our family. Drop a line if you have more information, please! 

Much health! 

Update: Two months after my elevated levels, my cardiologist repeated the cholesterol test and the levels came down to 164 mg/dl for the total cholesterol and 101 mg/dl for the LDL. The LDL was even lower than before I had Covid.

Covid, Part Two. The “Day(s)” After

It’s been a month and a day since I had my first symptom of Covid (http://livingwithfh.blogspot.com/2022/08/meeting-your-nemesis-having-heart.html). I tested negative for the virus on August 12, and today, over two weeks later since that negative test, I am still on what you can call “the mend”. 

Everyone who has been around me (besides maybe my husband) will tell you that what I had was a “mild” case. Although I believe the severity can only be judged by the patient going through it, I am grateful for the amount of symptoms I got. But it was not easy when I was in the throes of it, and it’s not easy now, several days and, soon to be, weeks later. 

My cough is still incredibly bad. Some cough spells are debilitating, even if for a few minutes. It seems to be worse when I speak for a long time. If I have 4-5 meetings at work where I am the main speaker, I lose my voice altogether at the end of the day. I cannot tell you where the cough is from. My sinus dripping is minimal at best, but this could be from my chest. I just don’t know. My oxygen continues to be good. 

I have days where I am incredibly tired. There is no good way to describe this “tired” except that it’s different from “I have worked in the yard in 100 F degree weather”-tired, or cardiac-tired. My body does not hurt, but it drags ... The best I can describe is this: some days feel like I am neck-deep in water in a place with a muddy, soft bottom (like a river bench or lake shore) and someone is making me run for my life - I can hardly push myself to move a little. I don’t know what’s bringing the tired on and I don’t know what takes it away. No amount of rest, napping, “taking it easy” seems to fix it. Breathing seems to be a heavy chore when these days are happening. I have no energy and no drive to do anything at all. I have worked through this, but I can tell that I am not very efficient. The next day could be a little better or 100% better, but I cannot tell you why. 

I can see how people get depressed about this or even ask for disability - because when this tiredness happens, I cannot even muster the strength to speak. All I want is just to lay somewhere till it passes. I know people who have this tiredness last for days or weeks. I am lucky because it usually lasts for about 24 hours and then it usually clears up for a few days. But it’s returned several times with different degrees of intensity. 

The “tired” days are also those with the worst brain fog. The brain fog is frequent - I struggle to remember words and to be coherent in a conversation pretty much daily (again, some days are better than others), but when the tiredness hits, I speak so slow that you could wonder if I just had a stroke. My mouth gets very heavy and I have to really look for my thoughts and think hard to express them in coherent words. I am a technical writer by trade, so sometimes explaining hard software-related concepts in easy-to-understand sentences is a struggle on such days. 

Some days are completely normal (except for the cough), and some are tired, foggy messes. 

The cough is really my biggest complaint, although the rest of the symptoms bother  me somewhat, too, because they are a disruption and an annoyance. Since I have a physical scheduled for 2 weeks from now, I figured I’d wait and talk to my doctor then. 

One other thing that feels bizarre is my new relationship with foods. Nothing every sounds appetizing and I don't crave or want anything. I eat because I have to, and some of my all-time favorite foods (like shrimp and seafood in general) sometimes taste absolutely awful. Some days, shrimp tastes like nothing and some days it makes me gag. Cooking fish in a pan to ensure it's cooked through (and dry) is my favorite way to eat fish, and this sometimes tastes awful too. The lack of appetite is coupled with a feeling of being full although it's sometimes right after I wake up in the morning, after having not eaten for a good 12+ hours. It's very uncharacteristic of me.

The good news is that so far, I don’t feel like my heart (or my circulation in general) feels any better or worse than before Covid. The blood pressure and pulse are normal, and the breathlessness and heavy-chested-ness are still very much the same as before. I did notice that my INR (the coagulation number that shows how “thin” your blood is) seems to run higher than before (the blood is “thinner” so it clogs harder), even when I cannot explain why (meaning, I am not taking more Warfarin, not cutting down on my greens, etc). Not sure if this is a side effect from Covid or not - I could not find a clear explanation for it online. It’s probably not something “they’ve researched yet”. 

Although I just got over this, I still am taking all the precautions I took before I got it: I mask indoors, only eat outdoors, and try to find activities outside, if possible. If not, I always wear a mask indoors. I have not been in an indoor restaurant yet and I might go in the future, but I will try to find places that have very good ventilation, high ceilings, good sanitation scores, and only go when they are not crowded. I still want to live my life, but I still want to try to never get it again, if it’s all in my control. 

From what I can tell so far, at least for now, I think I can safely say I dodged the bullet or what you might call a "very severe case", with lots of complications. For now. I still feel like in addition to the existing FH and heart disease monkeys I had on my back, now I have a third one, of long-term side effects from this rotten disease that’s killing so many all over the world. A disease that we still know very little about. But time will tell, and what's more important: I am functioning: I work, and tend to my house chores, see my friends, and do most of everything I set out to do in the morning ... One day at a time till we can know more ... 

Stay healthy out there!

Meeting Your Nemesis: Having Heart Disease, FH, and ... Covid-19

2 years, 4 months, 15 days. 

That is exactly the time between the day when the State of Emergency was declared in the US because of Covid-19 and the day when I had what later proved to be my first symptom of Covid-19. 

2 years, 4 months, 15 days of:

• Being mostly at home.
• Saying “No” to a lot of gatherings, especially the indoor kind.
• Wearing masks every single time we go somewhere indoors, unless it’s the house of a couple of close friends whose “hygiene habits” we trust. 
• Not flying. 
• Vacationing by car only.
• Eating only at restaurants that provide patio seating or taking food “to go”. 
• Traveling with hand sanitizer everywhere (purse, pockets, car, picnic bags). 
• Traveling with lawn chairs in our trunk so we can pick up some food to go and have an impromptu picnic - to preserve some semblance of spontaneity in our lives.
• Renting Airbnb houses for extended stays so we won’t have to share hotel space with ten thousand unmasked strangers for too long. 

Just to name a few of the very strict precautions we have taken so far. 

Both my husband and I are part of this exclusive (tongue in cheek) group of people considered to have a “high risk for severe disease” if contacting Covid. He has diabetes and high blood pressure. I have multiple heart conditions, and a mechanical aortic valve, plus a high-cholesterol disorder that causes multiple blockages in most of my arterial system - this adds to the risk of severe blockages which can lead to heart attack and strokes on its own; risks which are doubled by the presence of Covid which adds the risk of clotting, as far as research has told us so far. 

I have been terrified by the thought of contracting this disease. We are both vaccinated twice and have received two boosters (so, four shots, total). My husband is over 50 years of age, but I am not and the pharmacist didn’t want to give me the second booster because I did not meet the age requirement, nor do I have an immunocompromising disease, per se. However, my cardiologist told me I should get all the boosters recommended for either older patients or for those who are immunocompromised because of my underlying conditions and risk of severe disease. I shared this with the pharmacist, and he begrudgingly gave me the second booster. 

I have had nightmares for over two years now that if I were to get this, I would be one of the most severe cases, even with all the vaccines up-to-date! Given my complicated health history and (I am somewhat superstitious) given my odds (I already have a rare disease that affects about 4 in one million people, or less), I was thinking surely I will get it and will be the one to go to the ER and be on a ventilator for two months and never come out. I strongly believed that. At the very least, I was thinking that if I survived it, I would for sure suffer for the rest of my life from long Covid - that was a given!

I know people who know us (friends or neighbors) secretly think we’re being overly cautious and we exaggerate. I know we lost friendships during the past two years because people do move on. They ask you once or twice to come out and play and after too many “no”s or too many demands for distancing on our part they kinda politely drift away. But are “lost friendships” truly worth keeping, anyway?! 

I also insisted on getting the second booster because we had an overseas trip planned that we simply could not skip: we had to be in Romania for a family birthday that we could not forgo this past July. So, armed with masks, patience, many ounces of hand sanitizer and lots of prayers, we jumped on many planes (the first in three years) to spend two weeks abroad. I did not remove my mask on the plane, not even on the 9+ hour flight from Newark to Vienna. I did not eat, and I did not use the restroom on the plane, for fear of touching areas that many unmasked people were touching and then not having proper water and soap supply to clean up. The trip went as smoothly as anyone could have expected. The two week stay there was great and it was good to finally see far-away family after 3 years. 

And then, on the very last day at my mom’s house, so the very last day of our stay in Romania, on July 27, I woke up with a sore throat. It felt like maybe I had a post-nasal sinus drip. Nothing hurt, but the scratchy throat gave me pause, of course. Mom had a super-efficient a/c unit in our room and I kept thinking it’s probably because of the room being too cold at night. 

But the next day, the day we actually left to come back to the US, a dry, annoying cough accompanied the now very sore throat and the annoyingly runny nose. Wearing a mask during the flight back didn’t help matters, as I felt like I could not breathe properly with the cough, the nasal drip, the runny nose, and all ... 

We spent the first night of our trip back in Vienna, on an extended layover. After we landed, we took a cab to the hotel (we always mask in cabs) and then we walked all over City Center. My cough was more and more annoying and my nose kept running. I kept thinking “oh, no, this is not good” - but my husband was fine, so I was thinking for sure it’s not Covid, or else we’d both have it. That night (July 28), I took a Covid home test. The result was negative. I thought: surely, it’s gotta be allergies then: allergies from walking around the city from fumes and what not, allergies from airports, changing countries in two days, Europe’s too dry air which I am no longer used to ... who knows. 

We traveled the entire day of July 29 - for 24 hours, maybe more, before we got back home at 1 AM on July 30th. I coughed the entire trip. I did remove my mask in airports, in remote corners that we found with no people so I can drink some water and eat something. But I kept the mask on the entire time I was around people and definitely when I was in my seat on the many planes. 

I felt fine the whole trip back (minus the “normal” travel fatigue of being “on the road” for more than 40 hours!), except for the cough and the annoying runny nose. 

I did another at-home test on my first day back home - July 30. That one came back positive. The first positive proof that I had Covid. The dreaded two red lines showed up very indubitably, blinding me. The worst enemy that I have feared for 2 years + had now moved into my body! I felt robbed but mostly sad and fearful of what was to be next. I felt like I was holding an atomic bomb in my chest - about the blow up and kill me, first, and everyone around me, secondly. I felt betrayed and wronged.

The next day, we both scheduled a Pharmacy test, to ensure our test was not wrong, somehow. The pharmacy confirmed my positive test and showed that my husband was negative.

The following day, I emailed both my PCP and my cardiologist just to let them know so they can have this on my records, I figured. I knew that they would not do anything about it, because they had told me before: if I get Covid and it causes complications, I should go to the ER. The PCP sent me a standard "this is what to do when you have Covid" video (stay home, stay hydrated, rest, etc). The cardiologist said to come in for an infusion of antibodies. I told him that this was Day 7 since my first symptom and he said "Oh, too late for the infusion then."

In the days that followed, my cough got worse, my headaches got worse. My head felt (still does now, 11 days later) like it was full of water and the brains and sinuses kinda floated up in there, knocking themselves against the walls of my skull as I coughed. I speak through my nose and still cough. Yesterday, 10 days after the first symptom, I still tested very much positive - the line for the Covid confirmation test was bright red. This, they tell you, means that you can very much spread the disease to others so you need to continue to quarantine. This makes me very much question the guidelines about returning to work after “5 days since the start of your symptoms”.

On about Day 8 of this journey, I woke up so very tired. This was much different than the cardiac tiredness that I had while recovering from open-heart surgery. Nothing hurt (again!) but I felt like I could not move my entire body forward. I felt like I was trying to pull a huge cart full of apples, let’s say, and the cart was not moving but instead my whole body, every muscle was strained trying to nudge it. I cannot say my body was sore per se, but it was just lethargic. The tiredness continued in Day 9 and let up a bit starting Day 10 (the day count is from the day of my first symptom, not from the day when I tested positive). 

During this entire time, I have not had a fever and my oxygen level has been good (98-99). My pulse sometimes is a little high, even at rest, but that is the only vital I can say it’s been a little off. Some days I am dizzy but my head is still “swimming”, so it could be because of that sensation. 

I have read more materials on Covid in the past 2 years than I read literature for my major during college for four years. I have read about how atypical it is, how different it is for every one of us, and about all the criticism that doctors and the CDC and the WHO is getting for not being consistent and clear. Honestly, I have been myself confused at times, but what I think is safe to believe is that we just don’t know the whole truth or how to handle this yet. It handles us, more than we handle it. 

But - regardless of my confusion, out of an instinct of self-preservation, I guess - I have told myself this: we don’t know what we’re dealing with - that is for sure. So, I take all the extreme (what I personally thought to be “extreme”, that is) precautions I deem necessary to do my best to not get it and not bring it home. And even with that very conservative approach ... I ... failed at not contracting this mess. 

I have a co-worker who described us all getting Covid as a game of dodgeball: every day, we’re in this dodgeball game with Covid spewing its dirty balls at us, and at the end of the day, we’re looking around to see who else is standing. I have been standing (one of the very few in my circle of friends and relatives) for  2 years, 4 months, 15 days. I guess it was my time.

I am now in the midst of it. I honestly have no idea what tomorrow might bring: whether I’ll feel better or I’ll take a turn for the worse. I still strongly believe that when it comes to Covid there is no “pattern”, so I have zero expectations. I still fear long Covid, as much as before, but now that I have it, that it's unequivocally inside my body, I have a more realistic approach to it, similar to the one I had when I was going through my open-heart surgery: just live in the now. I found that living in the now, and dealing with what's in front of me gives me so much strength, physically and mentally.

Now, I have Covid. Today, I will listen to my body and deal with the symptoms of today. And tomorrow I'll do the same, when that day will reveal itself to me. I focus all my energy into going through today - and I cannot see past this. With this disease (like much of our lives, really), there is no planning. Only learning and reacting. I save all my energy for the reacting part, when time comes and I must do that. For now, I continue to take my meds, check my stats, eat a whole bunch of comfort food, and try to stay busy with work, reading, writing, TV, house chores, or driving around when cabin fever settles in. I long for a long walk, but I run out of steam way too fast, so that will have to wait.

With my particular health history, I do worry about clotting - I am on anticoagulants for my mechanical valve which you would think would help with keeping my clots at bay, but ... I have been traveling. When you travel and get out of your “normal” and are exposed to different foods from different areas of the globe, your INR (the number that shows how “thin” your blood is, in a nutshell) becomes a rollercoaster: mine has been anywhere between 3.2 (good! Almost no clotting expected!) and 1.4 (bad for me - mine has to be at least 1.5 to be safe for my valve; 2.0 is ideal). 

In the meantime, my husband has zero symptoms and has continued to test negative. And hence my belief that we know nothing for sure and there is no pattern. After so many years and so much literature, and now after my own experience with Covid, I can tell you: I expect no one to know anything for sure. There will be theories, and guesses, and even good, lucky, or even educated guesses, but I think we all have to be willing to ride that torrent of science till we do find some patterns and some “for sure” things. I believe, at this time, that there is no authority on Covid. Only some very smart and very hard-working people who are trying to figure it out. They need time, and money, and patience, and maybe one day they’ll have better answers. 

In the meantime, I am not giving up not even one of my previous precautions.  I will continue to mask; continue to eat outdoors; continue to look for heated patios in the winter; continue to get the vaccines that will be coming out. I do believe none of these have been in vain. I do believe that the fact that I could be sick with this for 11 days now and having made it across the world and through a full week of work without taking even one sick day (I do have the amazing privilege of working from home), even with a tired body and foggy brain shows that, in the whole scheme of things, this is a milder case which was probably possible with the help of the vaccines only. I believe all my measures kept us safe from the virus when we didn’t have vaccines and when it would have been potentially more dangerous for us. 

Being vigilant about Covid does take something away from you, for sure: it does take the freedom of moving about as you wish, the peace of mind that the air is safe to breathe, the comfort of breathing without a mask, and the freedom of living without the paranoia that the next person within 2 feet from yourself might kill you just by breathing. But for me, so far, it’s been worth giving these up to stay alive. 

One thing that is gnawing at my sanity, though, is this: how did I get it?! Obviously, the one thing that scared me the most was to be in an airport or worse, in an airplane. And obviously I did not get it there. Given that the symptoms started on the last day of my vacation, after being at my mom’s house for two weeks and taking the very same precautions as I would at my own house - where and how did I get it?! And even more puzzling: why am I the only one who got it? None of the people in my family that were in the same house as us had it; none of the relatives and friends that we met has gotten it - how did I get it? Why am I the only one with symptoms and with several positive tests? Again: is there a rhyme or reason to this disease?! We’d be infinitely richer if we only knew, but so far, it’s anyone’s guess.

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. 

Staying Safe in Times of Covid when Having the Additional Risks of FH and Heart Disease

I see a lot of people that ask on social media what are the proper measures to take as an FH patient during times of Covid - how cautious we should be and why, whether we should get vaccinated, or allow our kids to be vaccinated and so on. Of course, I am not advising anyone about what they should do with their lives, but I thought it would be helpful to share some of the measures I have taken to stay safe so far during this pandemic. 

We are getting ready to enter the third (as in 3rd!) year of the Covid19 pandemic. At the beginning of this (March 2020), I started keeping a journal about the pandemic, where I’ve entered personal notes as well as copies of articles about important milestones during the pandemic, insights about the numbers at various points in time, in various countries that affect me, my family, my friends, my coworkers. That journal is now 275 pages and getting longer almost daily. That is, by far, the longest unified writing record that I have ever produced. And the story of the Covid19 pandemic is far from over. In those pages, I document in painful detail, at times, how we have learned so much about something that was virtually completely  unknown when everything started. And in the process how we have learned about ourselves, too, what kind of people we are and how we deal with pressure, hopelessness, sickness, and even death. 

For the past two years, I have started my days with a quick scan of the news to find out what is new in Covid19 research, cases, numbers, symptoms, etc ... I scan the headlines sometimes obsessively to see what is new. Learning the news first thing in the morning is how I have started every day since March 12, 2020 when the world closed up for the first time. 

I have paid close attention to this pandemic for many reasons, some of them more obvious than others, perhaps, but most of them are related to my being an FH and heart patient, and because of this, feeling a lot more vulnerable than others to this disease. Here are some examples of why I have been so keen on learning everything there is to know (so far) about Covid, for my own health first: 

• I have FH and research shows that Covid19 is more aggressive for and causes an increased number of acute myocardial infarctions (AMIs) in people with this disease - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8289723/.
• Because of FH, I already have heart and cardiovascular disease and we know now that Covid19 causes disease in the heart and cardiovascular system that could lead up to severe complications and even death - https://www.ahajournals.org/doi/10.1161/CIRCRESAHA.121.317997. Adding more disease (or risks) on top of what FH already caused in my body sounds like a match made in hell to me. 
• I come from a family with lots of long-term lung disease and lung cancer patients: my mother’s aunt, my mom’s father and my mom all have had lung cancer. Her father also had emphysema and my mom also has COPD, lung fibrosis and asthma. We know now that Covid19 can cause long-lasting disease in the lungs and even death from lung disease complications - https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/what-coronavirus-does-to-the-lungs 
• I have a mechanical aortic valve which puts me at a higher risk for developing blood clots. For this, I take blood thinners (Coumadin) that prevent my blood from clotting, but keeping the right balance of anti-clotting agents in my blood is a tricky business. If my INR (the number that measures the level of anticoagulant in your blood) dips too low, clotting can happen easily. We know now that some people with Covid19 develop blood clots that can lead to organ damage, heart attacks, stroke, and even death - https://www.nhlbi.nih.gov/coronavirus/blood. Again, this is an added risk to an already existing one for me. 
• Studies have already shown that people with heart disease, high blood pressure, and high cholesterol are at an increased risk for severe forms of Covid19. I have all these three diseases. 

For two years, I have tried to stay as informed as possible about how the disease progresses, how the vaccines work, which vaccine is more indicated than others for my specific case. What are the risks of unmasking, what are the risks for contracting Covid19 even if vaccinated, what are the risks for contracting the disease again, even if vaccinated or previously infected - are all questions I have had and have tried to learn the answers to online - the amount of resources is staggering but you need to qualify your sources and learn the reliable ones. I use the CDC, American Heart Association, The Family Heart Foundation, WebMD, Johns Hopkins Hospital, The Cleveland Clinic, to name a few. Again, I don’t endorse any source over another - these are just some of the sources I have found helpful that publish up-to-the-minute new information. 

The CDC reported early last year that there was a 1 in 100 chance of breakthrough infections with Covid19 (meaning 1 in 100 vaccinated people will still get Covid19). This number was back when the Delta variant was the more dominant one.  More recently, some studies show that at least 5 in 100 vaccinated (and boosted) people can still contract the disease. The increase is due to the Omicron variant which is far more contagious than previous ones. Considering that I have Homozygous FH which has an occurrence of 1 in 250,000 people ... the Covid19 numbers scare me, to say the least, because they sound like Covid is so much less rare than the disease that I already have. My odds have always been in the “rare” range for anything. Even when I start taking a new drug, I always develop the side effects listed under “less common” or “rare”. 

I don’t run my life by the numbers, the percentages, or the estimations that research spews out every day, but I use them as a guiding factor to adjust my behavior. So far, my husband and I have been so lucky to keep Covid at bay with the measures we have taken for our small household. 

I will have to say this has been the first time in my life when I am actually happy that we don’t live closer to family because this forces us to not congregate with people if we don’t need to. It’s easier to say “no” to friends than to family. We have very little need to see other people and we can see the few friends we do have around us separately from each other, in very small groups. And we are grateful for a handful of friends who understand our need for separation. 

Some measures my husband and I have implemented are:

• For the first year (2020, when we didn’t have any vaccines), we did not eat at a restaurant, not even outside. We only picked up food to go and ate it at home or in parks. 
• Also for the first year, we did not socialize with anyone indoors. We always socialized outside, in open air, and we did not share food, utensils, or drinks. We sat distanced from other couples and we never met with more than 2 other people (one couple) at a time. 
• We did not travel overnight in 2020. We took day trips to cities close-by, packed food and lawn chairs to spend time in parks, but never spent the night.
• Last year (2021) we both got vaccinated as soon as we were eligible (March 2021) and we got boosted as soon as we were eligible as well (November 2021). 
• In 2021, we started going to restaurants and eating outdoors on patios only, because we felt a bit more protected, having been vaccinated. But again, it was mostly just the two of us, or us and another couple. Never more than 4 people (including us) at the table. 
• We started traveling in 2021 again, but only by car. We have not boarded a plane since 2019. We spent some nights away from home in AirBnB’s or hotels that have a reputation for enhanced and deep cleaning (Marriott and Hilton). 
• In 2021 we drove up to Michigan and Canada to see family, finally. In Canada, we felt completely safe. We took 3 Covid19 tests before we were declared “OK” to stay in the country and all of them were negative (of course). I have to say, as inconvenient as they are, tests add an extra layer of peace of mind. Canada also requires proof of vaccination everywhere you go (museums, restaurants, hotels) which also added another safety blanket. They also require masks everywhere and they will escort you out of the establishment if you’re not complying. Things are very different in the US.
• We did dine in a couple of indoor restaurants (about 6 over 10 days) in both Michigan and Canada, but we went during less busy hours where the crowds were not very large, or we requested tables at the end of a restaurant, to stay distanced from everyone else. The staff was always accommodating when we made these requests. 
• To this day, we never go anywhere indoors without a mask. To me, this is just common sense. Even when the CDC told us that we could ditch the masks if we’re vaccinated, we still wore them because, again, to me, that was common sense: if there is even an iota of a chance to get a breakthrough infection after being fully vaccinated, why in the world would you want to risk it, especially when you know you already have so many other factors working against you should you contract this crazy disease?! 

Masks, vaccines, incredibly good hand hygiene, distancing, avoiding crowds and indoor gatherings - these are all the tools we have used so far to try to stay healthy. What started as a huge inconvenience and massive paranoia has become our lifestyle nowadays. 

I am not saying all this has been easy. It’s surely taken some time to make it into a routine. But at the end of every day, health is worth every effort, in my opinion. What do we have? What can we achieve without health? We hope that some of these (especially the distancing from our families and friends) are temporary, but who knows? What if they are not? Since the time this pandemic has started I keep telling myself: we can only make decisions with the information we have today. And we move along ... And that’s what we have been doing: a lot less planning for the (far) future, a lot more adjusting to what we know today. 

But I have to admit: it is getting harder and harder to stay guarded. Not because we’re getting tired of it all, not even because the variants seem to be getting more infections, but because people around us no longer play it safe. Everyone says they are tired of all the rules, they are tired of the iffiness and of the lack of certainty of what tomorrow’s new variant might bring, or what the vaccines might bring or fail to protect. More and more people don’t mask up anymore. North Carolina, where we live, seems to be a slightly safer state (at least in some parts) than most where more people wear masks rather than not. But Georgia, Michigan, Pennsylvania, West Virginia, Virginia, from what we have seen so far, are far from that. In these other states, the proportion of masked people is extremely low compared to those who wear masks. The number of people wearing the masks correctly is even lower. In the US as a country, the vaccination rates are low, too. Scaringly low ... 

And I don’t even begin to comprehend how people can even turn any other kind of ear but a deaf one to the misinformation about Covid being just a “regular” disease, “not much worse than the flu”. But maybe it’s just me - like I said, I have started every day of my life with the news, with the researched numbers, with how scary everything looks. Everywhere. In all countries. Across the world ... I have no other belief than this is a real and scary disease that is as easy to get as it is to breathe. 

I often tell myself: I never felt like I had to put my life on hold for FH. I always knew what the risks were and tried to stay healthy, listen to my cardiologist, take the drugs, and still do everything I wanted to do. Why am I putting so much on hold for Covid? Since I am doing everything I need to do (I think), why am I not moving on with flying across the world to see family, or going on a tour of the United Kingdom (like it was our plan in 2020), or the likes. The difference now is that unlike FH where you have just one person to control, I feel like with Covid, you have to control your actions and everyone else’s. I cannot control people spreading it around me because they don’t mask, they don’t wash hands, they don’t vaccinate, and they don’t keep their distance, or better yet they don’t stay home. How can I control that?! The one thing I can do is to stay away from them. And hence the (semi-)hermit-like life I continue to lead. 

I am not sure how long we’ll keep these measures in place. My personal (ideal) goal is to not change much until Covid19 drops to endemic levels, but I know that this might not be possible. My parents are aging fast and they live across the world. I am hoping that this summer I will go to visit them for what it could be my last time to see them alive. I have not seen them in 3 years and they look like they have aged by at least 15! I might take a huge risk, greater than I ever planned for, and jump on a plane (actually more like 3 planes one way) to go visit them. But I just never know what tomorrow might bring. 

We still live our lives from day to day, waiting for the next batch of news, the next findings in research, hoping for better, more efficient vaccines, better drugs to treat Covid, and so forth. I don’t click on things like “Covid numbers are soaring due to the Omicron variant” or “Covid numbers are surging because of holiday travel” because really, they offer nothing new. The times we live now are, I am afraid, not unprecedented anymore, to some extent. After two years, we have seen how it goes: numbers go up in the cold months, they go down in the warm months, variants happen and they can be more aggressive (delta) or less (omicron), but both can mess you up (long Covid) or kill you. And the measures for how to stay healthy, minus one or two iffy guidelines, have largely been the same. 

I try to stay calm and just read the facts and act accordingly, only with an extra amount of caution because FH and my heart disease makes me that much more vulnerable. Mostly - I try to keep people at arm’s length and act according to common sense and what science shows now. 

Most importantly: I try not to panic and to have much hope. Hope in science and research, hope in the power of medicine, and hope that one day people will become kinder and more careful towards others as well as kinder to their own selves. After all, how can one survive without hope?! 

Stay safe out there, folks! Be kind to yourselves and others. 

On the Fifth Anniversary of My Heart Surgery

Hard to believe that five years ago today I was getting a new heart. They call it an open-heart surgery (OHS), but for all intents and purposes, it was really a rebuilding of my heart: a Bentall graft implanted in the place of my aortic valve, root, and ascending aorta; an aortic arch endarterectomy (repair), several endarterectomies of several main arteries in my heart, and four by-passes. My surgery is documented here: https://livingwithfh.blogspot.com/search?q=day+1+to+8 .

Just like every year on this date, I will read the surgery report and just wow myself into stupor. How much can a body take? Hours on the heart-lung machine, circulatory arrest flirting with the limit allowed, heart attack following the surgery, neuropathy for years after that, closed up by-passes years later, pump head that’s lasted now into my fifth year … But also, how brave and certain and a little crazy can heart surgeons be to have the courage and the firm hands to do it all?! The depth of human knowledge and curiosity and bravery to push boundaries never cease to amaze me.

The surgery was still the hardest part of this journey, I won’t lie to you. Just the thought of what the body went through, the risks, the pain, the sheer demolition of every nerve I was ever made of. Everyone told me right after surgery that my body got hit by a semi and I need to take it easy, and that was not a joke. Like I said before; I  felt like my body went to war. And it lost.

But also, the faith, the amazing knowledge of the Utah Valley Regional Cardiac Surgery team were humbling and awe-inspiring, to say the least.

The recovery, little by little, revealed new surprises every year. Every day. I had to learn how to function with neuropathy in my left hand and leg first, as well as how to breathe with neuropathy in my diaphragm, when my lungs were not getting a full load of air. In time, they all cleared up except for my pinkie and ring fingers – they are still full of needles.

I had to learn how to exercise again, a little bit at a time, after two bouts with Cardiac Rehab, a year and a little bit apart. Like a vet that comes injured from war and has to learn how to walk again, one small achievement at a time, I had to learn things and learn my new body. I was amazed how much it felt like I did get a new body, when in fact only the engine was replaced.

I had to learn new ways of monitoring my health, like managing my INR – and how not to freak out every single time the numbers are too high or two low … This, too, this scare and worry (because it’s still here and it’s constant), must be your friend, because it’ll never leave you … You just need to tell it some days: ah, well, we’ll try better tomorrow! Just chill!

Same goes for not freaking out when you accidentally cut off a piece of your cuticle while chopping veggies and then you can’t stop the bleeding. You learn about the amazing power of coagulating bandages that grow a scab for you when your body can’t.

You have to get used to new blood pressures and pulses. New, more difficult ways to get an accurate echo of your heart or even a good cath – because that Bentall graft is in the way. Catheters have a hard time getting through it to look at the really small vessels and it casts a shadow on your valve and heart and they’re never too sure what they see anymore … Much trust.

All such memories now, but also all part of the new me and new normal. You have no choice but embracing the new-ness. It is the new you. It is the better you. I feel different today and in some ways I feel like I exchanged old problems for new ones. But, believe it or not, the new ones seem more manageable than the old ones. My aortic valve is not two thirds shut anymore. My LAD is not 99% occluded anymore. My stamina for lengthy exercise, albeit slow to moderate, is much better.

Some things are different but still there, like the chest pain and the neck pain from the stenoses in my carotids. A lifetime of echos, ultrasounds, and MRIs is still the norm.

Although I took things easily right after surgery, little by little life became more normal: I started travelling, first by car, then by plane. Within a couple of years I found the courage to fly to Europe. I have been there twice since the surgery. I have been on two cruises (before Covid, obviously) and several times to Canada. I also traveled across the country by myself several times for work. It was, again, like learning baby steps. But it is possible. I can tell you I am in touch with every sensation in my body. If something is “off” I feel it right away. This has not stressed me as it’s made me more curious to learn more.

I have also learned so much from other patients. I have made friends during this journey that I would not have made otherwise,  people like me that share freely, honestly, vulnerably their own journeys. Their stories make me so much stronger and make me believe that there is so much strength in us. All I have to do is learn courage from them and find it in me. We all have it. Of that I am sure.

I have also become so much more grateful for every good day. Every day when my tiredness is not too much, I am grateful. I have become more grateful for my family. Every day that my husband does something for me to help me through – I bless him and people like him, those who truly have helped me through this, without whom I would not be here today. Of that I am also sure.

For those out there contemplating whether they should have OHS, I hope you find the strength to do it, and the faith that it can improve your life. I also hope you find the strength in your family and a great team of doctors to walk hand-in-hand with you through this journey. All I know is: you are never alone. You are the main hero of your destiny, of course, but there is a web of little helpers out there that will carry you through. To all of those little elves, starting with my surgeon and ending with my husband, my tireless caregiver – I owe them my life. And I humbly thank them.

Happy journey to all and Happy Heart Month!

On the left: February 11-12, 2016: the day of the surgery, before they wheeled me in; the day after surgery.

On the right: February 11, 2021