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.