Treating Heart Disease, Haggling-style

As readers of this blog probably already know, once you have cholesterol which is only somewhat managed but not fully, you start getting the additional baggage of heart disease and sometimes even strokes. So, as you well know, I manage two diseases - both high cholesterol and heart disease, hence the name of this blog. 

This entry is about how I have been trying to manage my heart failure condition in the past few months to a year now. My heart failure is only one of the several heart-related diagnoses that I have been saddled with. Some others are coronary artery disease (CAD), aortic stenosis, and atherosclerosis. 

I was diagnosed with a high BNP value in 2017 (for more information on that first diagnosis see this post from that year: ​​https://livingwithfh.blogspot.com/2017/05/cholesterol-and-heart-health-update.html). At that time, it was 285 pg/ml. But at that time, they did not call it heart failure yet. That didn’t happen until 2022. 

BNP shows the amount of damage in your heart and helps the cardiologist diagnose the level of your heart failure. My type  of heart failure is “Heart failure with preserved ejection fraction” which is a category all of its own. All other categories are different degrees of “heart failure with reduced ejection fraction”. My ejection fraction is good (unlike the heart failure with reduced ejection fraction), but the heart muscle is stiff which is what causes the high pressure, along with other symptoms, like shortness of breath. Outside of the BNP test required to measure the heart failure (a blood test which is not cheap - around $285 without insurance at my clinic), they can also measure the ejection fraction during your heart echocardiogram test which is something I get once a year. During this test, they can also see whether your heart is enlarged or not (more common with heart failure with reduced ejection fraction). Putting all these data points together, they can diagnose more precisely which type of heart failure (HF) you have. The treatments for any of the types vary slightly, so a correct diagnosis is preferred. 

Things have gotten worse for me since 2017 when they first measured an elevated BNP. It kept climbing all throughout last year, during which time my shortness of breath kept getting worse. For example, I could not go up one flight of stairs without feeling completely out of breath; nor could I walk across the living room with a half-full laundry basket en route to my laundry room without panting like a dog at the end of the 20 feet trek. Not ideal for a 47 year old who is not overweight. 

In November of last year, the BNP was the highest that it’s ever been, since we’ve measured it, at 692 pg/ml. Along with a worsening shortness of breath and higher BNP, my blood pressure has not been totally controlled, more often being around 160/ 50-60’s and more seldom measuring at around 120 / 50. Some days, it spiked to 180’s, too. 

During this time, the cardiologist continued to “play” with various drugs to try to manage my blood pressure, first. The belief is that if we control the pressure better, less damage is done to the heart muscle and the BNP will ultimately improve. 

I call it “playing” with the drugs because that’s exactly how it feels. When he decides to add drugs or change drugs for my blood pressure, the conversation goes something like this:

Doctor: Well, we could add the Spironolactone which is a diuretic and it’s a drug older than you are, or, we could add Farxiga which is a diabetes drug and newer. Which one do you want to try? It’s sixes to me! (this is all an almost exact quote)

Me: Well, what do they do? How are they different? (I am not sure that all patients ask this, but they should!).

Doctor: Well, one of them takes the water out of your system, the other takes the sugar out. Both have good results on improving heart function and ultimately BNP.

Me: Which one has fewer side effects? 

Doctor: They are both generally well tolerated, but the Spironolactone elevates your potassium, so we need to measure that periodically and ensure it stays low. No other side effects to worry about. (I have always struggled with a doctor telling me that a drug “is generally well tolerated”. I understand this is all they have sometimes, but I have found that the tolerance is always in the eyes of the beholder. And they never account for that.)

Me (dubious as I know from experience he leaves many side effects out): 

Well, I have not heard of either one, so let me research them and get back with you. 

And he lets me go home and we’ll talk about it at the next appointment, in three months... Then, I choose one (depending on what I find on the internet and what concerns I might have), and he works on the right dosage and how often to take it. And he puts me on it, we try it out for a while, I report any side effects, because there are always side effects (including ones the pamphlets never mention), and I decide whether the side effects are worth living with or we need to stop. 

The dialogue above happened sometime last year, when my BNP kept climbing up slowly till in November it got to 692 and my shortness of breath kept getting progressively worse. Before then, he tried many other drugs - I have been on Amlodipine since 2020; he also tried Losartan and Ramipril. But the blood pressure never really seemed to budge much. 

And then, he added Spironolactone. The blood pressure finally came down - my pattern was now reversed - more days of 120 / 50 and fewer days of 169 / 60. But the chest pressure was only marginally better, if noticeably better at all. And I started getting more palpitations and more panic-attack-type episodes than ever before ... But I stuck with it, because I wanted to see how the BNP would fare. 

He repeated the BNP in December and in February and both times, it was only slightly lower than when we started (581 and 598, respectively). So, finally, in February, I told him I am not sure I should continue with the Spironolactone. The side effects and the little benefit I was seeing did not justify everything else that was not conducive to a qualitatively good life.  I texted him (a luxury, I know, that I have with this particular cardiologist to be able just to text him!) and he said “Stop taking the Spironolactone.” That was that. Not replace it with something else, double up on the other things you’re taking (Amlodipine and Atenolol). Just stop! We have a follow-up appointment later this month, so I guess he figured he’ll make me guess on some new drugs again then! 

I stopped the Spironolactone but I started taking Amlodipine twice a day instead of once a day, basically doubling the daily dose at the very same time he told me to stop the other drug. The doubling was a judgment call I made, after remembering that he told me years ago that the dose of Amlodipine I was taking was a “child dose” (I am very sensitive to any amount of any drug, so he usually starts me on lower doses). So, I figured, if we double a child’s dose, we might get a better response for the blood pressure and by now I have gotten used to the side effects from Amlodipine. He was fine with that. 

Since February, when I made this change, the chest pressure has gotten so much better, the blood pressure continues to stay low, still with occasional spikes, but more rare, and the BNP dropped to 388 when we measured it in April this year - so, almost half of when it was the highest last year. Still too high (the normal is again, below 190 pg/ml), but I take any improvement. The trouble with doubling the Amlodipine, however, is more edema (swelling in the legs and feet) and more sensitive gums (more bleeding when brushing my teeth). You always have to know your body, notice what happens and try to weigh the bad against the good and try to figure out what is manageable for you. I am sure many of you out there would make totally different choices than me, when presented with the same alternatives as I have been. 

I am not sure what, if anything, he might suggest next. He has been bugging me about the Farxiga drug for several appointments now, but I am not sure about it. We will see ... 

On another note, (almost) no idea why this happened during this time, but my LDL cholesterol has come up since November. I have not changed anything about my diet, and outside of “playing” with the heart drugs, I have not introduced any other drugs. However, I lost my dad in November. My own grieving process and managing my mom’s depression from afar (she is in Romania and I am in the US) through her own grieving during this time has been excruciatingly hard. There are many proven studies that show that cholesterol rises with stress (has to do with a higher level of cortisol, the stress hormone, in your body - you can google this and there are virtually thousands of sources speaking about this). 

The latest change in my cholesterol levels

This is just a guess on my part. I have communicated to my cardiologist on several occasions that I am under a lot of stress lately, but when the cholesterol results came back earlier this month, I still got a note from him saying “don’t know why LDL is up. Will talk.” 

If I have learned anything during this journey, it is that the research I do on my own is just as effective, sometimes even more so, than the advice I get from my doctors. It is unfortunate and wrong, but it’s what it is. And I am not sure what broke what: the fact that the patients are more knowledgeable now than they were before caused the doctors to pay less attention and be less educated? Or the fact that the doctors are so much more super-specialized and not as thoroughly trained as before caused the internet to fill in the gaps because the demand from the patients is definitely there?! 

Like the cardio guy said to me: it’s sixes to me. I get my information from him, from other specialists and from the internet and try to make the best decisions. I figure the average of all those opinions is still better than doing nothing. 

Stay healthy, you all! And never stop fighting for your answers. 

It’s Been 7 Years!

There is something magical about number 7. It’s not my number (that would be 9), but it’s magical. I am not going to get into all the symbols of number 7 in all the cultures and throughout history. This is not about numerology. This is about the fact that 7 years ago today I got a new heart and a new lease on life. This is about reaching this milestone and being grateful.

7 years ago, in a hospital in the obscure (to those outside of the US) state of Utah, in a small town of barely over 100,000 people called Provo, I was getting my heart stopped, cut open, and I was having my aorta and aortic valve replaced with man-made parts. Then, I was having four bypass surgeries around four major coronary arteries that were between 90-99% blocked, and several endarterectomies to clean out the incredibly heavy amount of plaque that my 40 year-old body had accumulated due to this little known rare disease called Homozygous Familial Hypercholesterolemia. Are you awake yet?! 

I documented my surgical journey of 8 days in the hospital here (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html), for those who want all the details. Several years of cardiac rehab followed, all with ups and downs. This entry, is about the lessons I have learned in all the years that followed that day.

After that massive surgery, along with my body not feeling like my body anymore for a while,  several things transpired. I am guessing if you ever go through a similar journey, you might encounter these learnings, too, so I am sharing:

1. You might shamelessly, unapologetically fall in (platonic, respectful) love with your surgeon. My own surgeon reminded me that it was not only him, but the whole team (three surgeons and three cardiology surgical PAs) that gave me the miracle of a better-working heart, but I know he was the leader of the pack. The mastermind. The true artist. The guy with all the guts to reshape a heart so sick in just one, long (13+ hours) surgery, just because he made a commitment to himself that “he never wants to look at my heart again”. He made sure I never have to have that surgery more than once. How can you fall in love with the person who mended your broken heart? Literally?! I do not know how.

2. Even with a fixed heart, you can still have a heart attack - as my body proved just a week (7 days!) after he closed me up. This added insult to injury, let me tell you, but I was glad I was still in the hospital for it, with all the specialists around me. I survived that, too, although my heart is still reeling from the damage that attack did to my left ventricle.

3. You will re-learn your heart, its new antics, and your whole body after a shake-up like this! You will have new sensations in your chest, new symptoms of chest pain and dizziness, new types and intensities of tinnitus, and so much more! Nothing will feel the same as before the surgery. And it’ll take a couple of ER visits to learn that a heart palpitation might not always mean that you’re having another heart attack - sometimes, it’s just your blood pressure being low and asking for you to lay low for a spell! And the ER staff will give you a bag of salty chips to get the pressure back up and send you home. True story! 

4. You will learn that Coumadin will not kill you by making you bleed out! You’ll manage it, by fits and starts, and you will become begrudging roommates in this newly renovated body of yours. In the end, it’ll become like the rascal little brother that you sometimes love (it keeps you alive by preventing your new mechanical valve from clotting), but it annoys you sometimes when you can’t get a handle on what it decides to do one day (like make your INR twice as high as it’s supposed to be just because you exercised too much one week or your dad passed and you’re under too much stress). 

5. You will really learn the truth about what initially will feel like a cheesy cliche that “once a heart patient, you’re always be a heart patient.” This is, scout’s honor, the honest truth! There is no “cure” from heart disease, really. There is managing it, staying on top of it, but there is no “forget about it. This was in the past.” The disease will stay with you and it will morph into something else every year. Every month. Every day, even! There have been some big wins, for sure: my valve is very healthy and not leaking; my ejection fraction is healthy, around 50%. But there have been setbacks too: my smaller arteries which were too small for bypasses or endarterectomies have gotten sicker and possibly more clogged and continued to damage my heart muscle. My heart muscle, especially my left ventricle, is now stiff and my heart is in the beginning stages of heart failure (with preserved ejection fraction, which is the more rare and harder to treat version, so I have learned in the past year). The annual tests, and the quarterly cardiology visits continue and will continue for the foreseeable future. 7 years later. Indeed, I will stay a heart patient as long as I live. Some old symptoms are here, but changed. And new symptoms have popped up. But this is you now. And this is your reality. And this is OK. Have gun, will travel! You have the tools, the knowledge and the experience, and most importantly: your heart is still ticking - you learn to trust and move on. Being a patient is far better (sometimes), than being dead! And having a disease you can manage is a blessing! You will learn this to be true. I sure, we all want to be fully healthy. But if you were to have a disease, better have one you can manage.

6. You will learn how to be happy and feel safe in this body. Broken, scarred and winded, you will learn what it wants and move on. Take that trip you always wanted (I always wanted to go on a cruise. I went on two during these past 7 years), climb that mountain that you think it’s too much (I remember how I felt like I was going to die before I reached the top of Ensign Peak in Salk Lake City, but it felt like I conquered the world when reaching the top and taking in the view of the Salt Lake and the valley), fly across the world again, even alone. It’ll be scary, but you’ll do it. I (along with millions like me) had the unique misfortune to hit the Covid years during these last 7 years and that “stole” a couple of years of my life. But I learned how to travel locally and how to be careful and still found some joy in the temptations that were close-by. The world is beautiful even outside your front door. And I am glad to see another day to enjoy it.

7. You will learn how to advocate for yourself even more than before. There will be a time when you might have to change doctors - because your original “dream team” that first diagnosed you, babied you before and after your surgery won’t be available - because you’ll move or they’ll retire. The new people won’t listen to you, will assume you don’t know much about medicine or about what really happened during that surgery - but you’ll have to learn that your voice carries and you can always scream louder. You will make them listen, or fire them. And they will, eventually, keep you alive. But you will know that the force is in your lungs. 

8. You will learn to be humble. First off, you will learn to love your body again and thank it for carrying you through another day. I used to refer to my heart after surgery as "oh, my stupid heart", and I don't do that anymore! That was insulting to it. It was demeaning. Now, I cherish it and thank it for every beat, every single second. I bow to it with humility! It does such hard work and it's been through hell. You will learn the miracle of good days, of the days when you don’t feel like an elephant is taking a seat on your sternum, and you will feel grateful to the miracle of medicine that’s helping you through. 

9. You will absolutely become some kind of a germaphobe! No doubt about it! Bacteria and viruses will scare the crap out of you, especially when you read about folks getting sick with endocarditis and having the valve replacement surgery redone because no antibiotics worked to cure the heart infection! It will scare you witless, I guarantee it! 

10. You will learn abbreviations and acronyms that you never thought you’d learn in your life: OM, LAD, CVD, CAD, AHA, EF, HFpEF or HFrEF. No dictionary needed here!

If there is just ONE thing that I could share about how you make it through the hell of open-heart-surgery and heart disease and back is this: don't think too much of the future. Not necessarily in deep, fine details, anyway. Give yourself bite-size milestones to reach every day: today, you might focus on breathing better; tomorrow - on eating more properly; the following day on walking a few feet further. Whatever it is. Focus and do it with all your might, energy and heart. Keep moving forward through your everyday milestones and one day, you'll look back and be amazed at what you've been through, how much you've accomplished, and how strong you are as a result. Telling yourself "I want to climb Mount Everest 6 months after my surgery!" when you still have tubes going through your ribs and you can't take one breath without screaming in pain is nothing but demoralizing. Tell yourself you will kill that tube beast soon; focus on learning how to breathe with it; allow you body to heal and get strong by paying attention to it every day, and Everest will wait for you at the end of that journey. I promise it!

I think the one thing most dear to me that I cherish today is that I am still here. Today, while I am thinking of all the hardships I have overcome with gratitude, I am definitely not thinking about the ones that still lie ahead of me. If I do the work of today, I know I'll be as prepared as I can be for tomorrow's challenges. I have to trust that. Today, I am mostly taking a minute to be grateful. Today, I am thanking my team, my family (my husband is my Guardian Angel, my nurse, my psychologist and so much more!), God, and my body for being here for me through it all. To paraphrase Anne Lamott, "life is such a show-off".

Again, like I said above: I am humble. I know there are forces bigger than me at play. I am merely a raft on the angry ocean, being pulled away, and thrown ashore, but still intact. Damaged, and full of weeds, but still afloat. I’ll cheer to this and hope for at least 7 more "magical" years! 

A journey in time: from the day after the surgery, going home after the heart attack, happy in cardiac rehab, with my amazing surgeon, Dr. John Mitchell, at the top of Ensign Peak a year later and today - 7 years later! (you may click the picture for a larger view)

New Year, New Thoughts

I hope the new year is going to be truly happy and healthy for everyone who reads here and for your loved ones. 

I just realized that I have not updated this blog for quite some time and that even for me (not a daily, nor even a weekly poster), 3 months is a very long time to be silent. I would make a commitment to not let that happen again but I can’t. I have learned enough from life in my almost 48 years to know that stuff happens. Life gets in the way and we get side-tracked, or simply busy with so many things that leave us knocked out at the end of every day where we can’t muster the strength to crawl into bed, much less the strength to string two sentences together and ensure they are presentable to the world. 

I will open the entries for this year simply by laying out the thoughts that run through my head at this time, as I open a new page in my life. 

Surely, the fact that I lost my dad (http://wander-world.blogspot.com/2022/12/dad-obit.html)  in November, during the week of Thanksgiving, weighs heaviest on my mind. He died of complications from FH. He died almost exactly 4 months after his 70th birthday. He was diagnosed in his childhood, after the family already knew the history on his dad’s side. Back then, all they knew is that they all had high cholesterol, that there was no way they could manage it or cure it, and that one day, sooner or later, they would all die from strokes, heart attacks, or complications from diabetes - like the rest of their relatives who had FH. They had no treatment but even back when my grandfather was young, they were aware of FH and how it’s transmitted. I find doctors who still don’t know this today puzzling! 

Although dad lived much of his life during the many years where medicine made such huge advances in the management of FH (with cholestyramine, statins, Ezetimibe widely available in Romania during most of his adult life), he refused to get treated for it. He did not take one medication for cholesterol, not ever. Not even one time. He used to insist that it’s the medication that will cause the blockages (“it takes the cholesterol away from the blood so you can’t measure it, and it moves it to the blood vessels”, he used to say, “giving you the illusion that the levels are lower”) and not the disease itself, despite many doctors telling him quite the contrary, besides me trying to convince him with the science I had learned here, in the US. Not that this would have been too incredibly helpful, but he also refused any kind of low-fat diet.  His favorite foods were eggs and adding fat back in every meal! Potatoes were about the only vegetable he touched. And grapes were the only fruit, but only in the shape of wine which he made himself. 

Although they believe that most likely he had heterozygous FH (his LDL was in the mid to upper 300’s), he saw complications from FH quite early in his life. In his 30s, he already had high blood pressure and he started seeing early signs of diabetes. As years went by, he started having multiple mini-strokes. Even in his early 40’s he started having strokes and although his functions were for the most part maintained, his sense of balance, his ability to make good decisions, his temper got progressively worse. We could tell something inside his head was not right. 

His blood pressure got worse, and we saw some numbers in him that were unheard of. For years (10-20?) he walked the streets and drove his car with a blood pressure of 220/170 or higher. He used to joke about it, that he is superhuman and his blood vessels and his heart can handle this kind of pressure just fine. 

He begrudgingly accepted to see a doctor or two, maybe every 4-5 years but he never stayed on top of the treatment they prescribed for him. He would take medication only when he could not see straight from headaches or when he was so dizzy he could not drive or sometimes not even leave the bed. He never did get on a treatment that would truly control his blood pressure or his glucose. 

He didn’t take things seriously even after his dad and several of his uncles died of strokes. I used to half-joke and tell him “Dad, with this pressure, some blood vessel would one day pop in your head and then what?!” He laughed it off, saying “you don’t get it that I feel fine with a high blood pressure. Just like high cholesterol IS my normal, so is high blood pressure. Leave me be.”

And he died of not one but multiple strokes (or multiple blood vessels popped in his head).The most severe was in his brainstem which severed the connection between his brain and pretty much the rest of his body. His esophagus and stomach gave out first, then his lungs, and then he went into cardiac arrest. They revived him, but it was very hard to keep him stable because they could not control his blood pressure. When I spoke with his nurse - by that time, he was already on a ventilator -, she said she had never seen a pressure of 250/180 in her entire career. She told me he would never breathe on his own again and that she doubted that he would make it through a second resuscitation. Several hours after our conversation, he did not. 

I start this year not only missing him, painfully longing for our chats, and for his humor, but with the regret (for him) that he didn’t listen in time; that he didn’t trust the science to allow himself to hang out with us a little longer. 70 is so young to me! I also start this year with a renewed energy to not only continue to take good care of myself but to also educate others, through ways available to me, to get a head-start on this disease. My thinking cap is on on what more I can do on this front. 

I also start this year with new health concerns, and a new diagnosis for myself. Last year, my shortness of breath got much worse, even when my exercise routine was getting a lot more frequent and better. I started walking more, also doing yoga again regularly. We started traveling more and hiking more - so I felt like I was a lot more active than the previous pandemic years. And yet, I ran out of steam more quickly and taking a basket of laundry from my dryer to my bedroom (about 20 feet!) would render me breathless. I kept pushing and pushing for some answers with my cardiologist. He is reluctant to do any tests and he is especially against doing (angiogram) caths frequently because he is afraid with my damaged arteries, something will become dislodged and would cause even more acute problems than they are worth. My proBNP (a blood test that shows whether you have heart failure) kept going up during the year. It is normal up to 190 mg/dl. Mine went from 285 to 591 in 8 months. And my blood pressure was harder to control last year than the year before, although I was taking medication for it. 

After seeing another cardiologist for a second opinion and after pushing for answers from my regular one, they both agreed that I have heart failure with preserved ejection fraction (HFpEF) which is a more rare form of heart failure, where your heart muscle becomes stiff instead of being too loose. It is also harder to diagnose, they told me. The good news is that my heart muscle is still pumping well (my ejection fraction is “preserved” which is good - it’s at or above 50 - which is why this is harder to diagnose. Usually, in heart failure, the ejection fraction is very low). I have been on medication for it for a bit over a month now and I can definitely see improvements in my blood pressure and although I still have some shortness of breath, it is not as severe as it was before the medication. So, here’s hoping we found something that works, at least for now. 

I cannot even tell you how reluctant I was to take yet another drug! It is my 8th prescription medication and my 14th drug, overall (including OTCs!). I even told my cardiologist: “I am not scared of another surgery! Whatever it’s causing these new symptoms must be more disease. Send me to surgery, unclog my arteries! Whatever, but don’t just put me on another drug. I am 47! How many more drugs will we add to my list before I am in my 70’s? If I make it to my 70’s?!” Oh, it was not a pretty appointment. 

But the second cardiologist (he is actually a cardiologist I used to see regularly but I moved away from that city, so now he’s too far away from me) agreed that what I need is, unfortunately, more medication. And so it goes ... 

I know that a lot of folks who just now get diagnosed with FH are also reluctant to take medications. But I can tell you: I have never seen this disease work well without them. And once the complications from it start showing up (like my heart disease, dad’s diabetes, and his strokes), there is nothing but a combination of multiple therapies that works to give us even a semblance of a quality of life. It is the sad story of FH, but it is also a hopeful story. As long as we do our part, we research, we find the right team, and the right therapies, we can live our lives and be there for important moments for our families. 

My next thought is about my mom. She also has FH and she is also unmedicated for it. She has aortic stenosis and advanced coronary artery disease. Her blood pressure is managed well, thank goodness, but ... she is a heavy smoker and she has lung cancer and COPD. All in all, not a good “cocktail” of diagnoses for keeping her body supplied with life-giving oxygen. Like dad, she refuses cholesterol medication and diet, although at this point in her life, and with the advanced disease that she has, I would doubt the drugs would be able to reverse any of the damage. I am not very hopeful about what this new year would continue to bring to us, I would not lie. 

I usually don’t make any New-Year resolutions and I don’t go on a gym binge the first week of the year. I never have. But I used to be excited about the possibilities a new year brings!  I used to look forward to much better days than the ones we leave behind. But ... I have never started a year as defeated and as alone as I feel that I am starting this year. 

I am not physically alone - I am so incredibly grateful for that. I have a wonderful husband who is my cheerleader and my support system. I have a sister who although lives in another country is my rockstar example of how you manage FH well - she is our runner and all-around health guru. She is always there for me and ensures her kids live healthy lives, too, so we can teach them how to manage this thing and live fully. I have access to good drugs and good doctors (for the most part). But I cannot help but feel somewhat defeated. Like that saying about the cobbler having no shoes, I feel like I know everything there is to know about FH and yet I cannot stop it from killing my family, quite bluntly put. 

My heart is heavy and my thoughts are gray. I will try to push through, as I always do, but it will be a challenging year ahead. 

I hope for much, much health for all of you! In Romania, we always wish everyone “health, because it’s better than anything else.” And I truly believe that is true. We can move mountains, only if we had health. 

Happy new year! Happy new beginning! - I wish you all whole-heartedly. 

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.