What Being Cholesterol and FH Aware Means to Me

Those of you who follow this blog should already know my story (http://livingwithfh.blogspot.com/2011/03/my-story.html). Just in case you don’t, here’s a short summary: 

My parents knew that my dad’s side of the family had FH long before I was born. Dad had it, and his father had it, as well as most of his uncles and aunts on his father’s side. When I was 8, my pediatrician recommended that my parents would check my cholesterol level as well, because my liver was enlarged. My LDL was 525 mg/dl and my total cholesterol was 734 mg/dl. 

My mom fainted when she found these numbers, as she was the lab tech that actually read them for the first time. They didn’t have much hope that I would survive my teens. No one had ever seen such levels in a small child in 1983 Romania and with no medication or procedures on the market, they had little hope that I’d make it very long. Even in Communist Romania, with virtually no access to cholesterol-lowering drugs, they did know one important thing about FH: that it leads to premature heart disease or strokes at an early age. My grandfather had his first stroke at 48 and then, two years later, another massive one which left him bedridden. Even at my fragile age of 8, I had grown up to see my grandfather decay fast and I understood so much. 

My parents kept giving him as an example to me, of what will, for sure, happen to me, only much, much earlier in life because my cholesterol levels were so much higher than his. Even at that age, I learned what cholesterol meant (a white, fat substance that clings on to your blood vessels and organs and prevents them from working right), and what one can do about it: extremely severe diet (at the time, my parents would try anything so I was on a no-meat, no-fat, no-oil diet for about two years before they gave up on that because it was not really working for my numbers), and medication (in the beginning they gave me a white powder-drug called Cholestyramine which is a binder drug, but that didn’t help much either). I think I was 9 or 10 when I could tell you very eloquently what atherosclerosis,  dyslipidemia, and familial hypercholesterolemia meant. Google them, please! 

I went from doctor to doctor, from specialist to specialist till I was about 14 or 15. Everyone shrugged. No one knew what else to do. When I was in my late teens (19 and in college), I started to have heart symptoms: mainly tachycardia and arrhythmia so they put me on a beta blocker. They also did my first echo at that time and they saw modifications then, although I am not remembering exactly what kind. All they told me was “this is perfectly normal given your disease, but it’s serious.” 

I moved to the US when I was 23 and my first priority was to get on a treatment. Since then, I have tried every statin there is, and added much more to my regimen of drugs. Even with everything I have been throwing at this disease (http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html), my LDL cholesterol has only recently (this month) been within normal ranges but  still not at my ideal target (below 70 mg/dl). 

Even with much access to medication and specialists in the United States, my heart problems have increased over the years: my aortic valve and my aorta replaced, my aortic arch repaired for an aneurysm and four by-pass grafts of the major arteries of my heart. I also had a heart attack following my surgery. All this before my 41st birthday. It was then when I had access to genetic testing and finally my “very severe case of FH” had its own name: Homozygous FH, which is the rarer and more severe form of FH. This meant that my mom also has the disease. Because her levels had always been in the upper 200’s and because she doesn’t have much knowledge about her family history she never suspected it when she compared her levels with dad’s and mine. In her late 60’s now, she has just been diagnosed with a slew of heart problems, among which a stenotic aortic valve and severe atherosclerosis of most major arteries of her heart. 

In addition to my heart problem, I have moderate to severe stenosis in my carotid arteries and at least one instance of severe stenosis in one branch of my abdominal aorta. For now, we are keeping a close watch on these areas, with yearly exams and visits to a vascular specialist. 

I would not be sitting here writing this for you all today if it were not for the fact that I have been aware early in my life about what cholesterol means and what FH can lead to. I have taken every treatment that seemed to match my body and my needs and have made choices in my life that allowed me to stay as healthy as I can. Sometimes those choices went against the popular expectations, like choosing to not have children because I simply didn’t want to pass this legacy on, and I didn’t know if I was going to be around for them. 

However, I have had a full life otherwise.  I am proud of my family and their support, and proud of my marriage, my travels and my work. I would have had a different story, or not been here to tell you a story at all if it were not for the fact that very early on, I knew what this means and how to manage it and I started doing that as soon as it became possible. By then, I knew exactly what specialists I needed to see and what questions to ask. Awareness is key, with FH. 

September is cholesterol awareness month and September 24th this year is FH awareness day. If you know a little bit about your family history and you know you have people in your family either with high cholesterol (especially when they lead an otherwise healthy life) or with heart disease or stroke, urge your doctor to check your cholesterol and know what the numbers are and what they mean (http://livingwithfh.blogspot.com/2016/07/my-current-cholesterol-numbers.html) . Do this especially if you have children or think you might have them one day. Knowing early will allow you to start treatment early and slow the progression of atherosclerosis. Your life is worth so much more! 

Stay healthy and stay aware. 

Results After the Latest Addition to My Combined-Drug Therapy

I wanted to follow up on a couple of blog posts that I have published recently. In June, my cardiologist thought it would be a good idea to add one more drug to my cholesterol lowering regimen. I talk about that decision in this entry (https://livingwithfh.blogspot.com/2020/06/how-hard-is-it-to-manage-my-hofh.html). Up to that point, I had been on 80 mg/ day of Lipitor, 10 mg/ day of Zetia and 150 ml/ twice a month of Praluent (injectable).

Since June, he added 180 mg/ day of Nexletol (or Bempedoic Acid). This month, he repeated the lipid panel and the results are listed below.

As you can see, the drop in LDL cholesterol is fairly dramatic, for me. I have not had my appointment with my cardiologist yet, I have just gotten the results for the tests, so we have not discussed in detail what it all means. The appointment is in a couple of weeks yet. However, I do know that although my LDL and total cholesterol levels are within limits that are considered normal for healthy people, because of my history and my underlying disease, my targets are much lower. Ideally, several specialists I have seen and whose school of thought I have followed over the years, consider that my target level for LDL cholesterol should be 70 at the most. They say that a level around 30-40 mg/dl would be ideal. So, as you can see, I have a long way to go. Honestly, I don’t have too much hope that with what I know is on the market now I will be able to reach those lowest levels.

I am, however, happy with this new result, as lower can only mean better for cholesterol and less disease for my arteries, in general.

If you are curious to see if Nexletol added any side effects to my life, I have talked about them in this entry (https://livingwithfh.blogspot.com/2020/07/personal-side-effects-of-bempedoic-acid.html).

The “lesson”, if you will, of the journey with Homozygous FH, and sometimes with Heterozygous FH, too, is that at times one drug might not be the silver bullet for lowering and managing the cholesterol numbers. You might need to explore a combination of drugs and that combination is always as unique as every one of us. What I have found is that I tried different drugs and only this very combination of these four drugs in these dosages seem to do the most work to lower my numbers.

Good luck in finding that sweet spot to all of you. I hope it happens quickly and with minimal side effects and inconveniences.

Much health to all!

COVID19 and Heart Valve Disease

If you're a heart patient like me, I am sure you have been paying attention to this year's tumultuous rumble about how we are considered "high risk" individuals when it comes to COVID19. But what does this exactly mean? Are we more at risk to get it? Are we more vulnerable for complications if we do get it? How does COVID19 really affect the heart? Does it affect its entirety? The valves? The heart tissue? The pump function?

If you have just been diagnosed with heart valve disease, or any other type of heart affliction that requires surgery, should you go ahead and proceed with the surgery now? Wait till the virus passes? Wait till there is a cure or a vaccine? 

If you do have a prosthetic valve, will it get infected faster and more severely from this virus, like your surgeon told you when you got it that bacteria might get it infected? 

If you want answers to all of these questions and a lot more insight, I do encourage you to read this free e-book (or watch the webinar that produced it), made available by Adam Pick, the founder of the Heart Valve Surgery website and community. I have found information here about heart disease in times of COVID, and also answers to questions I had even before this virus appeared in the world, all the way back before my surgery which was more than four years ago. 

Happy reading! You will not be disappointed. 

Click the picture to access e-book or a link to the recorded webinar

Personal Side Effects of Bempedoic Acid (Nexletol)

I have been taking Nexletol (Bempedoic Acid) for a month now. As I mentioned in my previous entry (http://livingwithfh.blogspot.com/2020/06/how-hard-is-it-to-manage-my-hofh.html), this was an add-on medication for me to my other three medicines: Atorvastatin (80 mg), Zetia (10 mg) and Praluent (15 ml injection). I wanted to share here some side effects I personally have experienced so far. Not to discourage you from taking the drug, but just to share my experience in case you have questions about this when you are prescribed the medication. Again, this is a personal experience and that alone. Not an advice of any kind, medical or otherwise.

If you read that previous blog entry, you’ll also find out that my LDL is currently 193 mg/dl before the Nexletol. This latest drug is supposed to lower my LDL by 15%. This would bring the LDL down to 164 mg/dl which is still not optimal, but I guess the thought here is “every little bit helps.” Homozygous FH numbers are stubborn!

The one side effect I noticed right after (within days) I started taking the Bempedoic Acid was a horrible sore throat. It was incredibly painful and made my voice raspy and hoarse. Lozenges which normally soothe my throat when it is sore, did absolutely nothing to help it this time. The only thing that helped was ice-cream. This would normally be good for most people, but I am not keen on ice-cream. I know, crazy! Anyway, that lasted for about two weeks and it went away. Along with that, my nose was dripping like I had allergies or the sniffles. That also cleared up in a couple of weeks. I read that one of the side effects of Nexletol  is “upper respiratory tract infection”, so I chalked it up to that and I was happy when it went away.

A third side effect that seems to have been lingering now for a month is soreness in my joints, especially in my ankles. This has been somewhat steady, and it’s not getting worse. It is mostly like something between a dull pain and tenderness. My joints have been more painful this year, for some reason (could be age?!), but since the Nexletol, they are slightly more so. This has not cleared up, like I said, but it’s very bearable, so unless this becomes more disabling, I am willing to stick it out for two more months when the next cholesterol check is scheduled. I am curious to see what benefit I do get from adding this new drug. If I can tolerate it and my liver can tolerate it with no other trouble, I am willing to stay on it. We shall see.

Much health to everyone who has been on the journey of managing FH for a while or is just starting today. I hope you’re all safe!

How Hard Is It to Manage My HoFH Cholesterol Numbers?!

I have expressed this … sort of mild desperation before: I wish I knew what causes my cholesterol numbers to go up. There are virtually no changes in my diet (http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html), nor lifestyle, and as many people with FH know: diet wouldn’t much matter for the FH cholesterol numbers anyway. So, why my LDL oscillates anywhere between 140 and 190, I am not sure. Of course, both numbers are above the normal range and not anywhere close to what is considered desired for me (a top value of 70 mg/dl), but I would still like to know how to keep that number closer to 140.

The most recent blood tests showed the numbers you see in the picture below. Since March, if there is one change in my life is the fact that I probably deal with a lot more worry. I don’t know whether this also translates into a lot more stress, but it would be a fair assumption. Of course, we all have that, especially lately: insecurities about our health, our jobs, the economy in general, the loss of freedom that we have all felt because of the stay-at-home restrictions all add up to stress, I am sure. But, on the flip side of that: I have had lots more time to walk and exercise, a lot more than ever before. Walking, finding a trail and hiking are virtually the only times I get out of the house. And you would think those would translate into better numbers, but … not for me, I guess. I really would like to know what it would take to make the numbers stay low, once they do reach the 140’ish bracket.

My current levels

My liver functions, which I always insist on having checked when we check the cholesterol levels, are normal: in the past, I had those numbers jump up a bit, too. Usually, the cardiologist would send me home with “ah, well, that’s FH!”. Sure, there are other things they can “try”, like Juxtapid (https://en.wikipedia.org/wiki/Lomitapide) or LDL apheresis (https://en.wikipedia.org/wiki/LDL_apheresis), but for personal reasons that have to do with their side effects and overall impact on the body, as I understand it, I have chosen against them. And my doctor knows this.  

This time, though, he said something more than “ah, well!”: there is a new drug on the market that he would like me to try: Nexletol, or Bempedoic Acid (https://en.wikipedia.org/wiki/Bempedoic_acid). To recap, I will take the following cholesterol-lowering drugs going forward: Atorvastativ (80mg), Ezetimibe (10 mg), Praluent (150 mg), and Nexletol (180 mg). 

I have researched this drug to understand by how much it reduces the LDL levels and the numbers are anywhere between 17 and 21%, depending on your source. My doctor put the number at a conservative 15%. So, even with the fourth drug added to my cocktail, my  LDL number won’t be within normal range, generally, and I am still far off from my targeted range – 15% reduction would put me around 164 mg/dl (124 mg/dl when the cholesterol dips to the 140 range). The lowest numbers I can achieve is definitely the purpose, overall, even if they are not within the range.

Of course, with FH, we live and die by the numbers: the importance of the numbers being the lowest they can is paramount in reducing the risk for worsening my heart disease and atherosclerosis. 

My current drugs

I am happy that there is still research out there that continuously looks for alternative therapies for FH and I will take this new drug, as it so far promises little to no side effects. I hope the lowering of the numbers will happen for me as well – there have been other drugs that I have tried that have not worked so well for me, so this is always a possibility.

I plan to still measure my values as well as my liver values every 3-4 months. This has become pretty much routine for me. I will report back, as usual, when I know more about how this affects me, in general, and how it affects my levels, as well.

Much health to you all!

Staying Physically Busy to Keep Mentally Healthy

Disclaimer: This entry is meant to give you some ideas about what to do if you're bored during the pandemic (or when you can't leave the house much). Always listen to the medical officials' recommendations about what is safe and always know what is allowed in your area. If you feel like some of these suggestions endanger your well-being, by all means do not attempt them. This is my personal account only and this blog only documents things I have done safely since the COVID19 pandemic has started. Be kind to yourself! 

I am sure you have probably seen a million of these lists circulating on the internet. Well, here’s a million and one. 

I spoke to a class of medical students about how I handle my FH and heart disease conditions during this COVID19 pandemic, and one of the questions that kept popping up from the students that kinda stuck with me was “do you think this pandemic will have an emotional or psychological effect on people?”. And of course, even without being a medical professional, I am sure it will. Even if it’s not a bad effect, it will have some effect. For me, I truly hope that it will have a good effect just as much as a bad one: I hope this time reminded me to go back to living a simpler life, a much cheaper and less frivolous life, and I hope it reminded me that I have done this remoteness from people before and it didn’t kill me then (growing up in a remote village in communist Romania), and it will not kill me now. Not the isolation alone. At any rate. 

The two main and important (for us) things we had to give up during the stay-at-home period of this pandemic have been not seeing our friends and not able to travel or go see out families. We used to make a point out of going out of town every month, at least once a month. And we usually had 2-3 big trips planned during the whole year. All that came to a halt! 

Our state, NC, has started reopening some businesses on May 22 but given than we both are at high risk from complications from this disease, we are not jumping at the opportunity to leave the house just yet. We are still staying in and trying to keep busy. And that’s just the secret, I think, at least for me: if I keep my hands and body busy not only time will pass easier but I feel more focused, and at the end of the day more fulfilled, less lonely and useless. 

I cannot relate to people that need togetherness so much, so forgive me for not really tackling that aspect of this lock-down. We are both quite happy just doing our hobbies, or finding things to do around our home, or around town that do not involve crowds that we’re not missing the human contact quite terribly. Yet. I am sure the day will come … 

Before I give you the list of things we did to keep busy, I have to say: we do go out only for what is needed, and not wanted. We go out once a week for groceries (sometimes to multiple stores, because things are hard to find all in one place), we go to the pharmacy (usually drive-through only) about once a week, too; we go to the doctor’s office about once a month. We get take-out food about once or twice a week. Outside of these human-contact outings, we pretty much stay inside and do a lot of walking and hiking when we do get out for fun and not necessity, but usually we walk a non-crowded place. 

Here are some ideas from some of the things that we have done to pass the time so far, during the past two and a half months of quarantine (and we are continuing to do, we hope, throughout the summer): 

• At night mostly, we caught up on TV series or movies that we always wanted to see (The Kominsky Method, The Mentalist, Dead to Me are some examples) and we’re contemplating finding more or rewatching old ones that we love (Downtown Abbey or Twin Peaks)
• We have read books – my husband just finished Moby Dick – now, that is a time sucker! It’ll keep you busy for a long time.
• I have caught up on my magazine reading: I have magazines (several subscriptions)  stacked since the spring of 2019 that I never have time to read. I am going through them mostly during weekend afternoons to relax after a walk or running an errand. Magazines are great because they are like open doors to me – I always find articles so interesting that they lead to searching something more about the topic or the author online and then I keep researching for hours (sometimes days) about something I found in a small filler article.
• We washed our baseboards all over the house – two stories and all white glossy baseboards will keep you busy for at least a day. 
• We washed our windows – or at least most of them. Some of them are hard to get to, especially on the outside.  
• I planted lots of pots full of perennials in the back yard, and a couple in front of the house. I pruned, and cleaned up everything that was in the ground and came and went with the spring. We transplanted some bushes that took over the wrong corners of the yard. This kept us busy for a couple of Saturdays. 
• I started a journal about COVID19 and what this means for us, as a family and what it means for our country and the world. I update it virtually every day with my own experiences and frustrations, as well as the day’s headlines, what the governor’s ordinance says, what the president’s ordinance says, case and death counts, opinions, protests, how other countries do this, and any “new” experiences that are pandemic-related and new to all of us; if you want, you can even turn it into a blog, or write it in a new, fresh notebook. I find journaling very invigorating and I love reading about past experiences. Just think about it: what we’re living through today is active history. One day, your kids and your grandkids will want to know about these times and how you lived through them, what you did, what were your fears, insecurities, heartaches. This is how books like Anne Frank’s Diary happened. Just put it down on paper (or on Google Drive), just your thoughts. One day, it will make a nice little book, even if it is just for yourself or your family. 
• We redecorated a little. We are still to buy several pieces of furniture for at least two rooms in the house, but we have not gone shopping anymore since the lockdown started. Outside of that, we did redecorate our patio and our screened-in porch with things we ordered online or found at the hardware store. That took another couple of Saturdays. 
• We walked. A lot. We are on a mission to find a park, campground, forest, trail, etc, weekly and we walk or hike at least 2-3 times a week. We have found lots of trails nearby that we can drive to, and even some in our neighborhood that we are still to explore. 
• If you enjoy another type of exercise, or driving is not an option to you, you can look online for places in your area that offer online classes. Most yoga studios do, and there are others, like Pilates, Zumba, etc. Take an online yoga class (that’s what I have done), or take some form of online exercise online. If you find no live classes that are free or that you like, there are only millions of YouTube videos for whatever exercise appeals to you. Subscribe to a channel and make a date with your favorite video every day or other day of the week. Your mind will be busy keeping up that appointment and your body will thank you. Plus, don’t we all need to lose all this food we’ve been eating away out of boredom, anyway?! 
• Find a hobby you enjoy and revel into practicing it. You know that craft stores never closed during the pandemic, right? They were deemed “essential” for a reason, and they cater to every hobby there is. I have painted, sketched, and colored a lot. I still have a couple of hobbies I need to start a project in (below), so I am not done yet. My husband is a woodworker and he puttered in his shop a bit too. He made pens, a bowl, and a pendant for his mom for Mother’s Day. He also finished a project for our newly redecorated screened-in porch. 
• Take an online class. I found out through Facebook that one of my favorite writers was having a free online writing class called "Write Through This" and signed up for it on a Sunday afternoon when I normally don't have any plans at all. 
• Go out (with the proper protection and being mindful to avoid crowds) and shoot images of what the quarantine means to your city and surroundings: shoot pictures of restrictions notices, people misbehaving, or people in masks, etc. and create an online photo journal of these times. Just shoot anything that looks and feels different and pandemic-like to you. These times will (hopefully) not come back around maybe in our generation. So, record them in pictures. Again, your kids and grandkids will thank you one day, for documenting this for them. Just think about how much you’d enjoy seeing pictures from The Great Depression or The War that your grandparents or great grandparents might have shot for you. This is living history, again: help document it. We all have smart phones, so we don’t even need cameras for this project anymore. Upload them to your social media accounts, or create a Shutterfly account that you can share. 
• Explore new recipes: we all cook more nowadays, much out of need than pure pleasure. But make it fun: from your magazines (if you subscribe to them, like me), or from Pinterest, or other online sources, find recipes and try them out for the first time - experiment and improve. We made French bread which came out deliciously, Chinese dumplings, and a tomato and ginger jam with field peas curried patties that were to die for! I would have never attempted to make some of these foods, for fear that they might be too complicated, but they came out great. I love a new experience.  
• Meet your friends and family online: whatever your service of choice is, Zoom, Skype, Facebook – make a daily or weekly appointment to see them and catch up. You’ll be surprised at how much newness you will find from people who mostly just stay inside. They will have stories about their kids, the things they do, their neighbors, their coworkers, what shows they watch, what food they cook, etc. We text and email every day, sometimes several times a day, but I find the weekly video calls with my parents and sister recharging. 
• Take a roadtrip to a remote, deserted place and have a picnic - in your car or tailgate, or bring chairs: just park in front of a lake or river and just look at the birds or baby ducks (it’s springtime for a little bit longer, so the babies are here) and just stare at something different than your walls and your window view for an hour or so. You’ll be shocked how much peace and perspective that will bring to you and how much it will refresh your view on life. 

I am making a new list with some things I still have left to do and maybe you can take some of these as ideas we well: 

• I still need to really clean out my closets, pantry, laundry room, cabinets and make a donation pile for GoodWill. We have already done this partially because we sold our camper, so everything that we had in the camper was donated. But we need to move to the nooks and crannies inside our house. 
• I still need to clean out my (physical) files, in our filing cabinet: old receipts, tax documents, refile my important documents that I do want to keep (like birth/ marriage certificates, inheritance papers, stock market accounts, will, etc.). I have a huge filing cabinet that can hardly open it’s so full. I doubt all the stuff in there is truly needed.  
• I have already done this on January 1st, but if you have not, you can organize and archive files in your computer (for those who still have computers and don’t rely solely on tablets and phones). If you have not done this for years, it’s time! And this can take a while! If you can, buy a terabyte drive or some cloud storage and go at it. And as my husband says “Be brutal!”. A resume that is from 1999 is probably outdated. Refresh it and delete the old copy. 
• Make your will if you’ve been putting it off – I know at least one couple who did just that because, like all of us, they never get around to it in “normal” times. 
• If you have not done this already: turn your cd collection into a digital/ cloud archive.
• If you have the equipment, scan your pictures and negatives into the cloud/ digital archive. I am still to do this. I bought a device a long time ago that scans negatives into pictures and I have done about 30% of my negatives but I have a long way to go. It’s around $50, but this will be money well-spent to keep your memories for future generations.
• I still need to iron my husband’s and my dress shirts and dress clothes and cover them so they will stay protected. Something I never ever have time for. 
• I also need to iron my festive tablecloths and napkins – I love a fresh, ironed napkin for Thanksgiving and Christmas dinner but I never have the time to do it. 
• I want to start a new knitting, crocheting, or cross-stitching project. I am having trouble choosing which one, but my materials for all these are ready for me. 
• If you are truly, seriously bored with no ideas, just look at baby animal pictures online – I could not read when I was in the hospital recovering from heart surgery and all I could do is look at pictures. This cheered me up so much I could not tell you! 

I hope this will get your imagination going and will make you think of something to do safely in your plenty free time. Of course, our time is also spent at work (if we are lucky enough to still be employed) and with kids, if you have those (I don’t but I see how busy my sister is with two boys). But for the long weekend days, or the empty evenings that have no agendas, I hope some of these ideas will help. 

Stay healthy, all. Stay busy, and well! 

The “Good” and the Not so Good about Living with a High-risk Condition during the COVID19 Pandemic

Summary of a presentation I gave to Romanian medical students about how to handle the pandemic in the US, and how I personally handle it as a high-risk, heart disease patient

A couple of weeks ago, a friend of mine who teaches English at the Medical College in my hometown of Iasi, Romania asked me to have an online “class” with her first year students. These were students in the Dental and Pharmacy schools of the Medical College she teaches at. The topic was wide open, but I chose to speak about how I am faring through the COVID19 pandemic with a high-risk disease, like FH and heart disease.

Here are some notes on what I covered. I also speak a little about the questions they asked me at the end. Some of them surprised me with their compassion and insightfulness. After all, these are first-year students – so, the majority of them are no older than 19-20.

The COVID19 Pandemic and My Disease

You all know by now that one of the high-risk groups for COVID19 are heart patients. In addition to this, I also spoke in my presentation about how some of the early symptoms of COVID19 are also symptoms I manage daily because of my conditions (FH, heart disease, autoimmune disease).

To compare: some of the COVID19 symptoms and warnings are:

·       High-risk conditions:

o   Heart disease

o   Compromised immune system diseases

·       Symptoms/ complications:

o   Shortness of breath/ chest pain

o   Persistent cough

o   Strokes (30-40 year old patients)

Mirroring some of these, my relevant symptoms and possible complications:

·       Heart disease

·       High risk for strokes (because of FH and mechanical valve)

·       Moderate autoimmune disease (increased inflammation)

·       Persistent cough (side effect of blood pressure medication)

·       Shortness of breath

·       Chest pain (angina)

·       Increased vulnerability with (any) infection (because of mechanical aortic valve)

Some of the concerns I have here are: should I get infected, and should I have any of the early symptoms of the disease, how would I be able to tell the difference between some of my symptoms and the viral infection? Just something we have to think about every day.

Why the Quarantine is Hard for Me

As I mentioned before, I already have some symptoms that might make COVID19 hard to spot:

·       Consistent cough from medication.

·       Daily chest pressure and shortness of breath from angina.

I have had some appointments that have been canceled or might be canceled:

·       My yearly physical was canceled in March and the directive was “call us back in June”.

·       The dentist’s office was closed for 8 weeks (at the time of the presentation I didn’t know when it might open again). Any tooth trouble could be sign of an infection which should be addressed immediately for heart patients, as you know.

·       Canceling or postponing my yearly appointments for my cardiologist, vascular specialist, and all the yearly tests that keep an eye on the state of my heart and arteries. These are appointments that I must keep for my peace of mind, if nothing else. Advanced heart disease can worsen in months, so these are important check points for me to ensure another year (or so) of cardiac health.

·       One of the warnings for COVID19 is not to go to the ER or Urgent Care, unless they screen you first. But in the case of a heart attack or stroke, I would need to be in there immediately. Not sure how fast this will happen under the quarantine precautions of every medical office, and I hope I will never need to find out. Living with the fear of how it will work or what I will be exposed to once there is unsettling, for sure.

I have had some difficulty finding drugs and supplies:

·       I have a severe Vitamin D deficiency which is an added risk for cardiac health. I take a pretty high daily dose of vitamin D that must be vegan, because I can’t tolerate the animal vitamin D. I can’t find the vegan, high-dose Vitamin D in a store. Online, I have found that most everyone is now out of stock for Vitamin D. I have found one supplier that still had it. It took me twice as long as normal to receive it in the mail and it cost me three times what I normally pay for it.  

·       Everyone is completely out of strips for my INR machine which I use weekly. Some suppliers (like Amazon) still ship them but only to individuals who have an “Amazon medical account” (which I had never heard of before). I also found out that Roche, the manufacturer of the strips and of the machine only ships to medical offices, as well, and not to individuals. I am working with my INR clinic to be a registered “home tester” with Roche so they can send me the strips directly. This requires a bit of setup and lots of red tape – I have been trying to get this set up for three weeks and I am still not officially registered with the home tester providers, and I have still not received any strips.

Why the Quarantine Is Easy for Me

As weird as this might sound, there are some things that this quarantine requires that have come somewhat easy to me. Some of this is due to the fact that I live, every day, with some of the measures now required from everyone in place. 

For example:

·       As I mentioned before, I must avoid infection at all cost, because of my mechanical valve. For this, I have a very strict routine for disinfection and cleanliness to protect me from bacteria and viruses.

·       I already had most of the needed supplies:

o   Disinfectant, and antibacterial soap.

o   Masks and gloves.

So, when all these supplies were out of stores, I already had them in the house. I still have most of it, even two months and almost two weeks later.

In addition, I take PCSK9 and statin drugs (for cholesterol) and they are known to help with decreasing inflammation and boost the immune system.

Some personal reasons that definitely helped with the mental survival during the isolation are:

·       I have worked from home every day with remote offices in three different countries since 2017. So, it took virtually not adjusting to entire days spent on Zoom and being remote from my teams.

·       Another personal benefit is that I am Romanian, and we cook. A lot. So, trying to figure out a home-made meal three times a day has not been that hard.

How the Presentation Was Received

I was really impressed by how the students receive my presentation. Since I was crossing borders and I was addressing students from another country, you can imagine some of their curiosity was aroused by the foreign-ness of it all. Some of their questions were around how we do the pandemic here, versus what they were used to in Romania.

Some of them asked why I think the US has such a high number of cases. My personal opinion is that, outside the fact that we do have a large population, people just don’t listen. I am shocked when I go to the grocery store and people don’t respect the distance, they don’t wear masks and pretty much do everything they can to get others infected – like jumping behind the cash register when the cashier is supposed to be isolated, or sneezing and coughing without covering their mouth, or rubbing their nose, then touching boxes of products and then putting them back on the shelves. Just mindless carelessness.

Another question which I thought was very thoughtful and insightful for 19-20 year olds was how do I think people will be able to cope with this pandemic emotionally. Honestly, I struggle with the answer to this. Right now, I think we (my husband and I, my sister and her family and my parents and mother in law – all quarantined in two different states and three different countries) are doing OK, emotionally. For one reason or another, we can keep busy and stay connected with one another and things are pretty much settled into the new routine. But I do see people struggling all the time with the isolation, with the psychosis of not getting the disease, especially those of us who are at a higher risk of complications. Honestly, I don’t know how people will cope emotionally. What we can do, I think, is reach out and ask, and check and offer a sympathetic ear, and an open facebook/ facetime/ Skype/ Zoom/ phone line …

Unrelated to COVID19, one young gentleman asked a very specific question about the cost of the PCSK9 drugs: these drugs are, for the most part, nowhere near being mainstream in Romania. It was a surprise that a first year medical student knows about them at all. His question was very specific, too: “ I know these are very expensive. How can you afford them? Do you buy them out of your own pocket? Or is your insurance or pharmacy paying for them?” This gave me hope that maybe these drugs, which are life-savers for so many FH patients, might become more familiar in Romania, too, and that one huge hurdle that prevents so many people from getting them (cost) is already familiar to the medical world there.

I hope everyone is doing well, from a physical as well as an emotional perspective. Hang in there, protect yourselves, and others around you. And I hope we can all meet on the other side of this soon. Much health!