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.

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.