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.

Genetic Tests Are Not All Alike

I recently submitted a sample to 23andMe.com for genetic testing. My main reason was to find out if they find any genes present that might cause diabetes, Alzheimer’s disease, breast cancer, and others, but I must admit the ancestry report is also fascinating to review. 

My sister also submitted a sample about two months before me. Although both of us have been genetically tested for FH with medical tests ordered by our specialists, and we have both been formally (genetically) diagnosed with FH (I am Homozygous version and she is Heterozygous), both of us received a “Variants not detected” result from 23andMe for FH. They do disclose on their site that there are over 1000 genes responsible for an FH mutation and they only test 24 of them, so it’s understandable that they would not always find the variant one might have. As a matter of fact, I guess they most likely will not find a mutation. 

I was tested by Ambry Genetics about 5 years ago, and if you want to review their testing principles and approach you can find more information here (https://www.ambrygen.com/providers/genetic-testing/13/cardiology/fhnext#:~:text=Test%20Description,genes%20associated%20with%20familial%20hypercholesterolemia). 

I am not giving them a plug, by no means: Ambry Genetics happened to be the provider of genetic testing that my cardiologist worked with at the time I requested the test. There are other providers out there and your doctor might guide you through the process. 

My sister was tested in Canada, and I don’t know the name of the company they used because apparently doctors there are not as transparent as those here, in the US. Her cardiologist just informed her that her genetic test came back as confirming the FH diagnosis. 

The cost for Ambry genetics was $500 and it came out of my pocket, although requested by my doctor. The cost for 23andMe was $200. I know a lot of folks who order a 23andMe test kit because it’s wildly popular and available and the cost is much lower than a specialized test. But just wanted to share that you need to look into the principles of testing and the scope of each one to understand the results and not take them as absolutes. 

Hope this is helpful. 

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.

A Stress Test. And Finally Treated as a Human Being ...

Boy, they don’t call it a “stress test” for nothing, right? I think about this every time I have one. And not just the simple, hey, hop on the treadmill, run a few minutes, we’ll take your blood pressure, now go home, you’re all good! But the nuclear stress test is pretty long and inconvenient. (But then, I’m a wimp: anything involving an IV is inconvenient to me).  

I am not sure what it’s like when you’re not truly a cardiac patient and you’re doing it just to rule out cardiac issues. Maybe it’s easier to run uphill at whatever speed they set for you till your heart beats reach the stratosphere for a normal person. But I think any cardiac patient will tell you that it’s not a walk in the park for us - no pun intended here. 

I’ve done maybe 5-6 of these in my life. Maybe more. Definitely not less. I fair it pretty well. These are the basic steps:

• First, they hook you up to an IV and they give you some contrast solution (this is part of the “nuclear” part of the test).
• Then, they make you drink a glass of water and sit in the waiting room for an hour.
• Then, they call you into a room and you lie on a skinny table for 10 minutes and they take pictures of your heart. (These are the pictures of your heart “at rest” - this is another part of the “nuclear” part of the test, as the pictures capture the contrast going through your heart blood vessels to see how well they’re functioning).
• Then, it’s back to the waiting room for a bit longer (if you’re lucky and they have no one else ahead of you, you’d skip this step, but for me, it was another hour).
• Then, they hook you up to all sorts of wires to monitor your heart (similar to those you get when you get an EKG), to a blood-pressure cuff, and to an oximeter. Yeah, you’ll feel like an alien. 
• With all that gear, you then walk on a treadmill and they increase the speed and the incline of the treadmill as you go. 
• The goal is to make your heart rate go up to a goal that the medical science deemed appropriate for your weight/ height and age. This is the most important part of the test (the “stressing” part)  and I fail it every time.  
• Once you reach their goal, they inject some more contrast through your IV and they slowly decrease the speed and incline of your treadmill till you come to a full stop. 
• Then, they have you sit for a bit and then walk back into the picture-taking room to take pictures of your heart, now “stressed”.
• And that’s it! 

During the test, they ask you if you’re experiencing any discomfort (shortness of breath, chest pains, cramps in arms or legs, dizziness, light-headedness, anything else), and they have you rate their severity on a scale from 1 to 10. They also have you rate your perception of the severity of the level of exercise you’re performing - this goes from 6 to 20 (they call it “the Borg Scale”). I rated mine a “49” by the time they stopped the treadmill! 

The whole procedure took about 4 hours for me. There are lots of things that could happen during this whole thing. For instance, the first set of pictures (ar rest) was not good for me today, so they had to take them again. They said “there was intestinal activity” that obscured some parts of the heart. To “fix” this, they made me drink (on top of the water they gave me before the pictures) a whole can of Sprite. Somehow, Sprite is supposed to “fix” the “intestinal activity” and allow for better pictures (it feels like it does the opposite to me, but hey, I am no doctor). 

Then, they told me that if I don’t reach my beat-per-minute goal (which is 147 beats!!), they will have to inject me with something similar to caffeine, to stress my heart “artificially” even more. This would make the test at least an hour longer and would come with side effects (which the contrast solution does not have). Well, this is the part that I always fail: I have never reached my goal. I have at least two (maybe three) things working against me:

• I have a sick heart, to begin with, so my level of endurance is low. I get symptoms early on while my heart is not beating as hard yet.
• I take atenolol, which is a beta-blocker. The whole purpose or atenolol is to slow down your heart rate. A normal person’s heart should be about 60 beats per minute, but in real life, it’s more like 62-65. Mine is usually in the low 50 range (52-55). So, when a normal person’s heart is stressed out it would beat at 147 beats per minute (my goal), my heart would make it to about 130, if that! 
• A third thing is: so far, I have been young and skinny. So my goal (always done for a healthy individual, not for one with a compromised heart) is too high to start with.

But the lab techs have no choice. They have a grid, they must apply it. That’s all they are trained to do. And they can’t stop the test and just say “hey, she didn’t make goal, so this is the problem, she has a weak heart, let’s send her back to the doc”, because this is not the purpose of this test. The purpose is to take those pictures when the heart is most at stress. 

Today, I actually saw my heart go up to 141 which was my max (still, 6 beats shy of the goal). There are usually two techs in the room: one that monitors your EKG, your blood pressure, your oxygen, and writes everything down, including your symptoms, and one of them who is injecting you with contrast (or giving you caffeine and injecting contrast, if needed) who will also take the pictures, after you’re off the treadmill. The monitoring lady wanted me to go higher than 141 and I simply just could not. The contrast-and-picture tech had to make a call: should he give me caffeine to stress my heart artificially to reach 147? Or leave me be, since I was close to it and my symptoms were so severe that my heart simply could not take any additional stress, either natural, by me trying to add more to it, or artificial, through taking some drug? 

And for the first time in a long time, he actually looked at the patient, and not at the grid! He said: “her symptoms are already at 10+. I cannot, in good conscience, give her more caffeine, because I know her heart is already stressed out based on her symptoms”. I had shortness of breath of 10+ on the severity scale, chest pain of about a 7, dizziness of about an 8, a sharp, sudden headache in one side of my head of about a 6, a completely numb arm, from shoulder to fingertips - the arm was not in pain but it was so numb I could not hold on to the treadmill bar anymore, I would call the numbness a 10. In my experience, these are all symptoms of atherosclerosis and cardio-vascular disease. Because of the damage FH has done over the years, these are the symptoms that my body exhibits to indicate reduced vascular circulation due to plaque buildup and blockages. So, he injected me with more contrast to take the stress pictures and called it good at 141 bpm! 

I am so grateful for that man! Something in my heart (quite literally) tells me he made the right call. I usually don’t drink caffeine (I drink decaf coffee and no sodas), so I am not sure what the side effects would have been on top of the exercise I got that felt so, so, so far over my threshold of normal activity. 

I was just pleasantly surprised that for once I didn’t feel like a Guinea pig and actually felt like a human being. Seen. Heard. Understood. Listened to. 

We need more of these techs in the medical world. Again, I am not a doctor, so I am not sure if he broke some kind of law here - but as a patient, it felt like he had my best interest at heart (no pun) and did not stick me in some artificial mold that everyone has to fit. He assessed me, my performance, my symptoms, my “clinical presentation”, if you will and evaluated that. 

At one point, because he was paying attention, he told the monitoring lady to stop increasing the speed but to increase the incline more - which was smart and true: from my own experience, I know walking on an incline is infinitely more stressful to my heart than walking faster on flat ground. I didn’t tell him anything, but he noticed where the numbers were going up: and they were going up more when they increased the incline, not the speed. So, he adjusted the effort for me. He even said “her legs are so short, she can’t do the incline if we speed her up anymore” - and that is right! (I am barely 5ft tall). 

No results yet, but I was grateful for a positive and humane experience for once. This is incredibly hard to find nowadays.

Where To From Here?!

I am in somewhat disbelief that I am even writing this entry, but it bears saying that after a lifetime of managing my FH and my heart disease, I pretty much feel, at this time, like I am starting over. And this is not the first time I have felt this way. And I want folks to know that sometimes, this is our "normal". 

But let me elaborate: the reason that I feel this way this time is because I am looking, yet again, for a new cardiologist. I have changed cardiologists about six times so far in my life. The first two, I had to change because I moved - one time across the world and the second time across the country. The third time, I had to switch them because mine retired. Then, the fourth time, I needed another one, because yet again, I moved across the country, in the opposite direction. The fifth and now sixth times have been more or less unlucky: I managed for these last two times to find cardiologists that do not understand and do not know how to manage my heart condition in the context of FH. 

The fifth cardiologist I had could not read an echo. I kid you not! She did an echo after asking me "what kind of tests are you used to getting to monitor your condition?" I had to tell her that all cardiologists before her did a heart echo every year. So, she did that. Then, it took almost  a month for her to call me with the results. She, in fact, did not call: I called her to follow up and she confessed that she was waiting for "a more senior cardiologist to help her read my echo because she wanted to make sure she is giving me the right information." The funny part was that the echo was almost normal! 

The sixth cardiologist I have now, I have seen for about four years. We have had a love-hate relationship. Some days I think he gets it (he has been the first cardiologist to never have any issues getting my medicine pre-approved with the insurance which is amazing, for those of you who are on such medicines like PCSK9 inhibitors or Nexletol) But most days I think he is so far out of touch that it's not correctable. Lately, he has sent me to a vascular specialist because he was tired of me pressing him for information about the state of my arteries. He said "let me manage your heart, go to a vascular specialist for the rest of the arteries." So I did. 

Now, after having symptoms of dizziness, and more severe than what is "normal" for me shortness of breath with minimal effort or none, coupled with a persistent dry cough for the past year or more, he finally (again, after me insisting for months) did a blood test that is supposed to detect whether you have heart failure (the test is called NT pro-BNP - https://en.wikipedia.org/wiki/N-terminal_prohormone_of_brain_natriuretic_peptide). The normal value, according to his lab is less than 190 pg/ml. Mine was 285 pg/ml and he called it "mildly elevated and of no concern." After looking up the values and the diagnosis myself, I asked him how come it's not of concern since it's almost 100 units higher than normal. He said he'd repeat the test because he believes it to be a fluke. What basis for that?! None was given. 

So, he repeated it. The second time, the value came back as 434 pg/ml and this time he acknowledged it was high. He did order a stress test and an echo to evaluate the heart (finally!). 

In the meantime, though, he wants me to add a "new" medication (his word) to my 10+ drug list - a medication from the class of SGLT2 inhibitors (https://en.wikipedia.org/wiki/SGLT2_inhibitor).  I asked him what this is for and he said "it's for diabetes but it has cardiovascular benefits." If you read about these drugs, they are clearly prescribed for type 2 diabetes. I was incredibly disheartened to hear this because there is absolutely nothing wrong with my sugar metabolism. My glucose has never been high and I have never been suspected of diabetes. Why would I take something that would make my sugar lower than normal, I don't know, but it doesn't sound right ... I know he is the doctor, but when you doubt something, you owe it to yourself at least to check with another opinion, if not respectfully step away. 

Overall, my cardiologist seems to prescribe and treat heart disease the way he treats older patients: with lots of drugs (this is not the first drug I have refused to take from him), while he has no knowledge of what is new or in research for FH (and he admitted to this before, as I documented it here). So, he might know what he is doing, but not for an FH patient. 

You would think that after so many years, I would know right away what kind of doctor I need to have to manage my condition. But even with lots of years of experience and with incredible luck before to find the perfect doctors for me, I still struggle to find the right person every once in a while. 

For the newer people who are just now diagnosed: I want to tell you that this is a long journey and you'll be constantly fighting for your health: weather it will be to find the right specialist, or the doctor who really gets the disease, or to find a drug that works for you, you'll never have a time where you can just coast and let others manage your health for you. You'll need to stay vigilant and advocate for yourself. 

Like one of the FH Advocates, Patricia Young, so astutely says (https://thefhfoundation.org/patricias-story): no matter how well your doctors might think know the disease or a condition you might get as a result of its complications, you'll always be smarter and know more, because you'll learn to have "a Ph.D. in you". You'll know your body and your disease like no one else, and oftentimes know more than any doctors. And it's OK to speak up. 

And now, after treading water with my current cardiologist for four years, I am trying to move on and find a new one. It's hard to know where to go from here. Some require referrals and not sure if my PCP will offer referrals for doctors outside her medical system, but I am asking nonetheless. But whatever I'll need to do, I am ready to do it, because time cannot wait when you have heart disease or FH that keeps adding on to its complications. 

So, yes - it's disheartening and discouraging but what is even more discouraging is doing nothing. 

Onward, to hopefully better doctors! 

Much health, everyone.  

My Awareness of Lipoprotein(a)

I must admit: for someone steeped in reading materials about cholesterol, I am sometimes a bit puzzled by lipoprotein(a). I will try to explain in what follows how I first learned about it and what resources I have used to learn more about it. Also, in my FH journey, I am also seeing  a lot of people wondering what kind of specialists they should see. I mention a few of the ones I have used to understand more about this special lipoprotein. 

I have known I have genetic high cholesterol since I was 8 years old. At the time (in 1983 Romania), they were just measuring total cholesterol (which mine was 734 mg/dl) and triglycerides. They did not measure all the different fractions of cholesterol you now see on your lab report, like LDL, HDL, VLDL, cholesterol ratio, etc ... 

They started measuring my LDL (in addition to the total cholesterol) in 1998 when I moved to the United States and I was 23. At that time, my LDL was 475 mg/dl. I have known since I was 8, with the original diagnosis, that I had an increased risk for early heart attack or stroke, and I knew this not just from the literature available at the time, but also from my own family’s history. 

But I did not hear about lipoprotein(a) until 2009. That’s right, this is 26 years since the original diagnosis, when I was 34 and had already been diagnosed with atherosclerosis, cardiovascular disease and coronary artery disease. The gentleman who first spoke to me about this new cholesterol particle called lipoprotein(a) was a pharmacist by trade who was running the lipid program at my cardiologist’s office. The cardiologist that I was seeing was absolutely stellar and knew a lot about dyslipidemia in general and hypercholesterolemia in particular, but he left the treatment of it to his pharmacist who was more in-tune with the newer treatments.

The pharmacist said at the time that in addition to knowing my LDL cholesterol (which at the time was 252 mg/dl), we need to also understand the value of lipoprotein(a) which is a newer cholesterol fraction that is also considered to increase the risk for cardiovascular disease. 

According to the Wiki (https://en.wikipedia.org/wiki/Lipoprotein(a)), lipoprotein(a) was discovered in 1963. This is 12 years before I was born. So, for me to first learn about this at the age of 34, you can say news travels slowly in the medical profession, or at least used to. 

In 2009 when I first learned about it, the test for lipoprotein(a) was not covered by any insurance and only some labs were performing it. So, my pharmacist that was running the lipid program  sent my blood out somewhere else in the state to be analyzed. The result came back as 18 mg/dl and he concluded that it was great - not elevated at all. 

Over the years, the test has become more and more routine. It is still not performed as part of a routine cholesterol check and you still need to ask for it specifically. But it is covered by insurance and just about any doctor can order it (not necessarily a specialist, like a cardiologist or lipidologist). The doctor must have a legitimate concern about your risk for cardiovascular issues, based either on other cholesterol levels or family history. 

 

Many doctors have told me that there is no need to re-measure the lipoprotein(a) (like they measure the LDL every 3-4 months) because it stays the same for the length of your life, barring any severe disease (like a huge infection or cancer which I did not have). However, some doctors wanted it measured when they saw me for the first time.

You will find that some labs measure it in mg/dl and others in nmol/l which can make a difference too. So, occasionally, when I had to switch doctors the new ones wanted to have their own tests in hand from their own labs, measured according to their standards, so they re-did the lp(a). 

This is how I know for sure that for me, lp(a) did not stay the same. Not even close. As you can see from the table below, it has been continuously going up, although my LDL cholesterol has been going down. Also, as you can tell, the unit of measures are not consistent. 

The FH Foundation’s website (https://thefhfoundation.org/high-lipoprotein-a-101) notes that lp(a) could also increase at menopause and you can say that I might be reaching that age and this could probably be an explanation for the increasing levels in the past two years (I am 47 now). 

Click for a larger view

Over the years, I have also seen people who have a severely elevated lp(a) and close to normal LDL. They typically have had either a cardiac event or have been diagnosed with cardiovascular disease - something I am familiar with as an FH patient. 

So, during my lifetime, I went from a definitely normal lp(a) value at 18 mg/dl to an elevated one at 63 mg/ dl, despite my expectations being set in the beginning that this should not be a concern for me, as the lp(a) remains relatively stagnant throughout our lives. As it stands today, according to the last lipidologist I saw last year, I now have a double risk for cardiovascular disease. Before he even measured the lp(a) he said he expected it to be elevated. Of course, with a complex open-heart surgery and a heart attack in my recent past, this is no surprise at all. 

LDL has always been my nemesis, so I have always kept a close eye on that. Luckily, there are therapies that help keep my LDL as low as possible for me (I have Homozygous FH so it is hard to keep it at a normal level), but from what I know now, there are no therapies available on the market for lowering lipoprotein(a), outside of lipoprotein apheresis . However, some treatments are in the works: the FH Foundation’s site talks about possible future available treatments here (https://thefhfoundation.org/treating-high-lpa#:~:text=Lipoprotein%20apheresis%20is%20currently%20the,(a)%20from%20the%20blood.) 

Another thing that is different from FH is that elevated lp(a) is actually very common: about one in five people have elevated lp(a) whereas about one in 250 people could have HeFH or about one in 250,000 people could have HoFH. 

During my lifetime of 47 years, I went from not knowing about lp(a) at all to now, not only learning about its existence, but also about the risks it poses for people like us, to then learning about the frequency with which it can occur as well as seeing possible new treatments for it in the near future. Today, we have a foundation (The Family Heart Foundation - https://thefhfoundation.org/)  that advocates for awareness for lipoprotein(a) and we even have an International Lp(a) Awareness Day on March 24. 

I wanted to take this moment to celebrate this day by remembering my own journey with lp(a). I also wanted to celebrate  the progress that science and patients, warriors like many of us, have achieved through the years in giving us more resources and creating more awareness about this silent killer. 

Happy Lp(a) Awareness Day, everyone! Stay healthy and always know your numbers. 

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.