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!