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!

When Being a Germophobe Finally Stops Making Me Feel Like a Pariah

Protecting ourselves from germs in the time of the coronavirus pandemic

My brother-in-law gets the award in our family to be “a germophobe before it was cool”. I won’t steal that title from him. I am only his late-adoption second follower. Nowadays, the whole world’s gone apey with buying disinfectants!

The truth of it is, for me, until I had my open-heart surgery, I thought all the precautions were a bit exaggerated. And then, about four years ago, they opened my chest. And cut open my heart. And after all that was over they told me that I had no immunity for a while, because my body was busy creating white cells to heal my stitched-up heart and not creating white cells to protect me from infections. Infections which, in turn, could muck up (that is a very correct, strictly medical term) my newly inserted artificial aortic valve and my artificial aorta and cause me to get endocarditis (heart infection). In which case, I’d have the surgery all over again to redo the transplant. That is, if I were lucky enough to catch that before it would kill me.

I guess what used to be somewhat of a slur word has now become ennobling. Today, we’re all trying to protect ourselves and (hopefully) everyone else around us from spreading the coronavirus, so we all take pretty much the same precautions I have been taking for four years now. Because what we hear is that the number one thing we can do ourselves is to stay clean, kill the virus by repeated cleaning, and not spread it, if we do get it, by staying put. Some of these things I have now done since my surgery four years ago.

Some of the things I have always done:

·       I never put my silverware in a restaurant on the table. I wipe them (sometimes with hand sanitizer) and put them on a clean napkin (inside of the napkin out). Of course, we don’t worry about this right now, since we can’t eat out.

·       I never put my menu on my plates (again, now it’s not helpful, but keep in mind for when we get set free again).

·       I always have at least two small bottles of hand sanitizer with me. I sanitize my hands before I eat in restaurants (even after washing my hands in the same restaurant), after shopping anywhere, after using my credit card, or filling up my gas tank.

·       I try hard not to touch my face until I get home to properly wash my hands with very hot water and lots of soap. I scratch my nose and face with my elbow or my shoulder.

·       When I travel by plane, I travel with Lysol wipes and I disinfect everything around me that I touch: the armrests of my chair, my seat-belt, the table in front of me, the vent above my head, the light switches.

·       I never wear the clothes I wear on planes and airports the day after until after I have washed them again.

·       I never unpack my suitcase and I never touch anything in a hotel room until I wipe down all the hard surfaces, all the light switches, door knobs, bathroom fixtures, toilet, etc …

·       The first thing I do in a hotel room is remove the bed spread. That is infectious! Not traveling now, but this is my usual routine.

·       We (my husband and I both) wipe the handles of carts in grocery stores, even before the pandemic.

·       I have hand sanitizer not only in my purse, but also in my car and my husband’s car, as well as my travel pack and my carry-on pack.

·       I never go to pools or public hot tubs anymore. Not even to dip my toes!

·       Even before my surgery, I would never use the tubs in hotels, but now, I wear beach flip-flops in the shower of the hotels, for my feet not to touch the public tiles in the bathroom.

During this pandemic, I stepped it up a notch to also:

·       Disinfect the outside of boxes and bags that come from the grocery store with Lysol or alcohol.

·       Throw away (recycle) any plastic bags that I bring home.

·       Wear a mask when I go to the hospital for appointments. No, I am not making them unavailable to the medical staff, these are masks I had had for years. During flu season, for four years now, if I have had appointments, especially in a hospital, I have worn the masks. In January, before we knew about the coronavirus, I had an appointment for an MRI. I wore a mask because it was wintertime and I was going to be in a huge hospital where they see thousands of patients a day, either admitted there or from the ER. You just never know. Now, during the pandemic, I wear the mask even when I go to a clinic. I know they said masks won’t help you unless you’re sick, but I can’t help but think that someone who is already sick like a doctor or a nurse who sneezes around me can infect the air which I am breathing in, so I feel like a mask guards me against that polluted air.

·       Both my husband and I try very hard to respect the guidelines of social distancing nowadays, too. We had a neighborhood party where our neighbors placed lawn chairs in a circle in a cul-de-sac on our street, 6 feet apart from one another. They brought their own drinks and they had a “social distancing neighborhood party”. But I didn’t feel safe enough to go to it. They also brought a table where people could share finger foods.  I guess we’re still new to this germaphobia thing and this social distancing, but sharing your cooking with the neighbors is not, in fact, distancing much …

·       We go to the grocery store 2-3 times a week (we try less but they keep running out of things we need so we end up going several times till we find everything we need).

·       We order out from a couple of restaurants a week.

·       Outside of this, we stay put or walk by ourselves a lot.

And that reminds me: I always have appointments. Whether they are specialists’ appointments, or primary care visits, or lab tests, I have one at the very least once a month. This month, I was scheduled for a physical but my cardiologist emailed me to tell me not to go to it. He said the risk of exposure to the virus will be higher than the risk of skipping a routine physical, unless I had serious concerns that I had to clarify with my regular doctor. Which I didn’t. Funny thing was: the next day my regular doctor called to cancel it with pretty much the same reason: routine visits will stop so the staff can be available for the increase demand of possible flu patients.

As a heart patient, I am considered to be someone with a higher risk of mortality and increased severity if I contract this virus. I am trying to continue my “normal” protected routine as I am adding new guidelines to my caution. I am not panicking and I am not bored yet. There is so much to do in this house, so many projects and things I have always wanted and needed to do that I never had the time for. Time is all I have now – a luxury that might not come around often!

Also, I am not judging but I am shocked that so many people must not have had cleaning products, alcohol, soap and other cleaning supplies in their houses already – because obviously they all needed to get them now?! Or maybe they never got them before and they don’t know that you don’t need to get 10 bottles of Lysol. One will do for a couple of weeks. Or, geez, how long has it been since you really cleaned your house, people?! We were lucky to have most of these products already, but our supplies are dwindling now and the stores are still empty for the most part. Hopefully, people are stocked up for a while and the bounty of what was once overflowing American bounty will return.

Stay clean. Stay safe. Stay distanced. Keep warm hearts, everyone! Let’s see each other on the other side of this, with lots of good stories to tell!

A New Member of my Health-care Team – a Vascular Specialist

You will learn fast that when it comes to FH you very often don't take just one medication. You take several. You don't follow up with just one test. You follow up with multiple tests (blood tests, imaging, etc). Very often, you don't see one specialist, but you see several, as a routine. This is a story about all that. 

Following up on my January appointment with my cardiologist (http://livingwithfh.blogspot.com/2020/01/the-en-garde-life-of-fh-patient.html), I got an MRI of my abdominal aorta in February. The list of findings was long, but the most important ones are the following:

1. There is a significant stenosis at the origin of the celiac trunk (>75%).
2. There is moderate proximal stenosis in the superior mesenteric (~50-75%)
3. The right renal artery has an acute take off. There is moderate stenosis (eccentric in shape) at the ostium of the right renal artery (~50%).

These are the most important concerning areas that this latest MRI revealed.

I will also have to add that for the first time in … I am not sure how long of a time, the MRI tech chased me down the hallway after the test was over and after the nurse took out my IV to ask me about my history. He, of course, did not say anything about the findings, as they never do, but he had a cheat-sheet with hand-written notes in his hand and he wanted to understand my history, my background, and why I had such an involved surgery four years ago (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html). I wondered when he did that what he found or whether what he found was unexpectedly worse than what he was hoping for… Maybe this is why no techs ever talk with you when you have these tests – because if they do, you start wondering and worrying. I wondered, but not worried. With my history, you take pretty much each day as it comes and try not to expect too much.

A couple of days later, I got an email from my cardiologist saying something to the effect that “it all looks good. Abdominal aorta unchanged from the ultrasound we did in December.” I pulled my December results and the findings then were quite different than what this MRI showed. Then, they noted the following:

Mild to moderate calcified plaque was identified in the proximal to distal segment of aorta. Elevated velocities were recorded in proximal to distal segment of aorta,
suggesting a greater than 50% stenosis by velocity criteria. The
bilateral common iliac arteries were visualized (…)  with mild to
moderate calcified plaque identified. Elevated velocities with biphasic
waveforms were recorded in proximal segment of common iliac arteries
bilaterally, suggesting a greater than 50% stenosis by velocity criteria.
(…) Elevated velocities were recorded in the proximal segment of celiac axis artery and superior mesenteric artery, suggesting a greater than 50% stenosis by velocity criteria. Decreased diameters in caliber were identified throughout.

As you can see, the findings were quite different. So, I questioned him. He insisted that the findings are “the same, but the tests are different, so we can’t compare apples-to-apples: one was an ultrasound, one was an MRI, so the measurements are different but the diagnoses is the same: I have disease, but there is nothing they want to do now because it’s not near 90%, so I need to just wait it out.” (pretty much an actual quote from the cardiologist).

I did not feel comfortable about his answer. I do like the work he is doing for my heart, but I felt like he was taking my aorta findings quite lightly. I pulled out my operative report and started to highlight all the references the surgeon had made to my “porcelainized aorta” and the “severe stenoses” he had found in multiple arteries. The aortic valve was so calcified only one leaflet (out of three) was functional. And I wanted to sit down with a vascular specialist to understand exactly what kind of a risk my arteries are facing. From my annual heart echo, I have a pretty good understanding of my heart, I think, but I feel like I need a “watch” plan for my arteries just the same, in addition to my heart.

When I had my surgeries, the three surgeons that were in the OR all told me the state of my arteries was one of the worst they had ever seen and my own surgeon repeatedly told me that I need to monitor them closely, not only in my heart but everywhere else in my body.

So, I pushed for more answers. I asked the cardiologist for a referral to a vascular specialist and apologized if he thought I didn’t trust him – I do, but I need someone more specialized in arteries the way he is in the heart. He didn’t take it the wrong way (I hope) and he made an appointment himself with one of the interventional cardiologists and vascular specialists in the same clinic. I met with this new doctor last week and it was quite a different conversation than I had with the cardiologist.

He does manage hearts, but his specialty is all “the other” arteries, outside of the coronary ones. He agrees that I should be equally concerned about my arteries as I am with my heart. He explained that the difference between the ultrasound and the MRI is that the tests are indeed different and the level of detail is higher on the MRI.

He would like to monitor me, and get on a yearly monitoring plan, probably a CT – Angiogram scan every year to all the arteries between my jaw and my knees. Although he agreed that the most accurate test would be an MRI (and with the least amount of radiation), he would need to order three MRIs to capture the length of the arteries he wants monitored, whereas with a CT-A, he can order one test. The MRI, although the most accurate, would triple the cost. 

The main area of concern is my abdominal aorta and especially my celiac trunk, but also the mesenteric and renal arteries, as well as the subclavian arteries which come up as stenotic in the carotid ultrasounds.

Now, I add one more test to my yearly plan: in addition to a heart echo, we will add a CT-Angiogram scan which will probably also replace the yearly carotid ultrasound that I normally do.

The vascular specialist will work together with the cardiologist to follow the development of my disease closely, both for my heart and for my other areas of my arteries. 

I’ll have to say, I feel better about having a plan. The cardiologist was maybe going to repeat the tests, but the thing with him is: he keeps doing a different test every time – an ultrasound, an MRI, a CT scan. I felt like we need some consistency, to build a baseline, and to see a clear progression from where we started, over time. This is what I did for the heart and this is how I knew when things were bad enough in the heart that I needed to have surgery. The vascular specialist agrees. He also “promised” me that I will probably have more surgeries in my lifetime to correct some of these areas as the disease in them looks pretty advanced for a person my age. So, watching this closely is that much more important, so we know when we need to act, hopefully before some major event should happen.

I guess, the moral of this story is like always: if you have doubts, if you need more answers, ask, explore, push and get them. There is no shame and no guilt in wanting to be in the know about your own body. It is your life, after all!

Happy health, you all! And I wish you all answered questions, and answered prayers!

Four Year Anniversary

In some ways, 4 years seems like yesterday. And in most of others, the past 4 years since my open-heart surgery feel like a lifetime. I am not the same person I left on the other edge of that precipice. I never will be. That person is in my past, maybe even dead, and this new metamorphosed person is here now, scars and all, to tell the story of what was and what is here today. I do know one thing for sure: if it were not for that open-heart surgery that old person would not have made it alive to today. And there would not have been a new one.

Every year, I recap what happened: the aortic arch was repaired and cleaned out from the multiple levels of calcification; the ascending aorta was replaced with a Dacron graft; the aortic valve was replaced with a mechanical On-X valve; four coronary arteries (including the LAD and OMB, some of the larger ones) underwent endarterectomy (this is plaque removal) and bypasses. A week after the big surgery, the heart attack followed.

Three months of cardiac therapy and pretty much bed rest followed. Three more months of not being myself, tired all the time, having visions, tinnitus, speech lapses, left arm and left leg neuropathy, labored shallow breathing and sleeping sitting up followed after that. After about a year, I started getting used to my new normal which still involved some degree of all these. Also after about a year, I started flying again. After about another year, I started flying by myself. One baby step after another, I made it to today. I never count the days that passed except on my anniversaries. I am just glad I am here and I get to write this. I am grateful for every breath, every tic-toc, every full minute that slips in the past.

New symptoms every so often, old symptoms getting better or disappearing, old drugs and new ones are my every-day routine, but then again – they were part of my old life, too, so not much to get used to there. Some old issues disappeared but I traded them with new ones.

New and old tests show that my valve is doing great. Most of my bypasses are closed because the cleared arteries are working fine on their own. The bottom part of the heart is a little weaker than the rest of the heart but with an ejection fraction of up to 65% I am almost as close to the old ejection fraction as ever (it was 70% before the surgery). The blood pressure continues to be very atypical, in various ways, but there are yet more tests for that to follow. Some of the neuropathy still exists in my left hand but my leg is 100% better.

My breathing is mostly better, except with exertion. All in all, I am lucky. I work full time; I travel anywhere and any time I can. I really cannot ask for more. The best present I was ever given in my life was these full years after that surgery!  Every single minute of every one of them.

Every year, on this date, I read my operative report and beyond the awe of what a body can get through and survive I find at least one thing that makes me chuckle.

This year, I found these statements which refer to a type of surgical clamp. But if you’re not in the know … they sound hysterical, I think: “The bulldog was released and hemostasis was satisfactory. The bulldog was reapplied.” That just made me laugh out loud. Just the visual of the bulldog, the dog … who “was released …” Must have been a friendly bulldog, since it didn’t kill me.

Looking forward to tomorrow and every day after, but I have no expectations. Just enjoying every minute of every breath and being filled with gratitude.

One baby step after the other – the only way I know how to do it …  

The “En Garde” Life of an FH Patient

Happy New Year to all and here’s to much health, first. Here’s to everything else, second!

If you have read my blog before and if you are an FH patient yourself, you already heard me say this and you already know yourself that life with this disease is a constant checking in with your doctors, and a constant changing, adjusting of diet, medication, exercise, routine, etc … We always have some value to check, some artery to scan to see the progress of disease, a blood pressure, a calcium score to follow, or even new tests that we didn’t even start with when we started this journey.

Now, if you’re one of the “lucky” ones, like me, who has seen this disease affect other parts of your body, if you are a heart patient, or a fatty liver patient, or a kidney patient, then you have a full time second job to keep up with. But we all know this. I am just reiterating it for those who are new to it and might be wondering what it looks like.

But there is good news, you all! The good news is – if we do stay on top of these checks and appointments and scans and what not, we have a big change to a pretty regular life, otherwise. We live in a time where there is more and more known about FH and about what it can bring about if left untreated. We have places to research, we have The FH Foundation, and we have more and more medical professionals who recognize, understand and can manage it. Just remember this, too. The power is in the knowing, and there are infinite more places to find out information about it today than there were when I started 33 years ago in communist Romania!

Now, I’ll turn the focus on me and what the latest check-up has revealed. I saw my cardiologist in December. I did get the results to my blood tests shortly after that, but the rest of the tests that he ordered took a while. So I am posting this now so I can cover all the findings. I will have to give you a fair warning though and tell you that this might be boring. But, if you want to know the details of my every-day life, I hope you find something helpful here.

Before I saw my doctor in December, I had had a couple of months of really weird dizzy spells. I could be sitting at my desk, working, or on the couch, reading, and all of a sudden my head weighed 1000 lbs and the room started spinning. It is not like vertigo, it’s more in a heaviness and my knees sort of turn to jell-o. I mentioned this to him and he did several things:    

• he hooked me up to a holter monitor for 48 hours;
• he also ordered a ultrasound of my carotid arteries (which we know have narrowings of about 50-69%);
• he ordered an ultrasound of my abdominal aorta;
• he reduced my beta blocker drug (Atenolol) to 37.5 instead of 50/ day.

He figured that if there is an increased narrowing somewhere I guess it could cause the symptoms (hence the ultrasounds), and if there is anything “electric” wrong with my heart, the monitor would tell him. The atenolol could be slowing down my heart rate too much which could also cause the dizziness … I guess that was the reasoning behind all those.

Well, the carotids are stable – still at 50-69%, which they consider not yet bad enough to do anything about.  I am really happy about the fact that they seem to be stable for the past 4 years or so. Ever since my LDL dipped under 200 (which is still nor normal, but incredibly better for me), my carotids seemed to have slowed down the shrinking. Until then, every year they showed to be a little bit worse.

The distal abdominal aorta came back as narrowed as the last MRI showed – with a cross section of around 0.7 x 0.6 x 0.9 cm this time (I believe the normal diameter for a woman is around 1.7 cm). The abdominal aorta came out as less conclusive than the MRI showed it 7 months earlier, so because of this he is ordering an MRI next (but more about why that is needed in a second).

I reduced the Atenolol but for some odd reason, although my dizzy spells didn’t stop at all, my blood pressure started climbing right after I did that. I consistently got numbers like 167 over 59 and 165 over 55 and I felt even more dizzy and felt more heart palpitations than ever before. So, I had to take the Atenolol back to 50 mg/ day.

The holter didn’t show anything worth mentioning. Historically, though, the electrical function of my heart has been great. I have never had a-fib, and have never needed a pacemaker, or defibrillator, for a change!

Because of my blood pressure being so high lately, he is ordering this MRI of my abdominal aorta again. He wants to eliminate any suspicion of a severe stenosis before he does a nuclear stress test to look at my heart and before he medicates my blood pressure. So, those steps are next.

He also checked my cholesterol and my liver in December. My total cholesterol is up, slightly, as you can see in the picture below, but that is because my HDL is actually up, for the very first time in 5 years! I never quite buy the “eat nuts, they’re good for your HDL” talk, because I always think that fat is fat and your body doesn’t know the difference, but … I am here to tell you that the only thing I changed about my diet is the fact that now, I eat a handful of (very) dark chocolate – covered almonds once a day, almost every day (5-6 times a week). Now, the size of my hand is very small so don’t think that I am eating like a pound of chocolate almonds. It comes out at around 6-8/ day. This is the only change I made to my diet. Coincidence?! Not sure, but whatever it is, I’ll take it. I believe there is some research that says if you already have coronary heart disease and atherosclerosis the HDL does little to protect you against disease but I am pleased that the pesky LDL was not the one on the rise this time around.  

In addition to all this, he checked the level of my lipoprotein (a) for the first time which is slightly high, although he commented that “not high enough to be an issue.” I have included my level below along with the normal range. As I am learning about this new fraction, this value does not change during your lifetime (except it can increase with menopause for women), and does not respond to diet, exercise or medication. So, it is what it is, I guess, for the rest of your life. Here’s what the wiki says about it: https://en.wikipedia.org/wiki/Lipoprotein(a). 

I also like to know things like these just for my own education. Right now, there are no medications that affect this protein but it has been studied that it is one of the fractions that does contribute to CVD and atherosclerotic diseases. Maybe in the future there will be research that you could qualify for if you are one of the people with a higher value of the lipoprotein (a). All it takes is a blood test and you never know why it would be important to know.   

My liver values all came back normal, thank goodness! I always encourage everyone who is on any medication for cholesterol to demand that doctors check their liver values, because you just never know how these medications affect the liver and you do want to stay informed about what is happening in the liver before it’s too late.  

I went back to see my cardiologist this week because I am truly concerned with my blood pressure lately. We will follow up with an MRI of my abdominal aorta, like I said, and we’ll go from there. He wants to see my heart next but not if I have some sort of a severe stenosis in my abdomen. He believes my carotids look “clean enough” at 50-69% blockage, and he repeats what pretty much every other cardiologist has ever told me “when you are this young doing less too early is better than doing too much.” So, stents are not recommended for my age (almost 45) unless the stenosis is more severe than 90%.

He also checked my kidney values because the narrowest portion of my abdominal aorta is my infrarenal aorta. The kidney functions are fine except my BUN and Creatinine which are incredibly low. He did not comment on that at all (and from experience none of my other doctors do), but I researched this and one of the reasons they can be low is lack of protein in the diet. This would make sense, because I am almost 100% vegan and I eat about 1-2 servings of fish weekly. I do eat beans and nuts, but possibly not enough?! So, my next step is to incorporate more protein in my diet somehow. This will be a tricky business because protein messes up my INR level which is important to stay between 1.5 to 2 for my mechanical valve to be happy. Like I said: constant checking, adjusting, tweaking … and …

Onward we’ll go. I will probably follow up with one update after all the other tests are settled and we have stabilized or are on the way to stabilize that naughty blood pressure.

As they say in the heart patient world, folks: the best to you all, and keep ticking!