Immunocompromised in the Age of COVID-19

So that I am able to walk and lead a somewhat normal life instead of being confined to a wheelchair, I take medicines which have numerous side effects, one of which is to suppress the immune system.  When exposed to germs, my immune system is less able to fight disease than it did before I took these medicines.  I look perfectly normal, and unless I tell you about my medical condition, you would not know that I’m not perfectly healthy.

I have dealt with this situation for a dozen years now, and am frankly tired of people who have become experts by watching the news and reading online blurbs for a few months telling me how to protect myself.

Guess what?  I have gotten quite adept at protecting myself from inconsiderate people who go out into the community when they are sick, spreading their germs when they ought to be home recuperating.

  • I carry hand sanitizer and use it after interacting with people. I’ve done this for eleven years.
  • When I enter a grocery store, I wipe down the handle of the cart with one of the wipes that are available in a little stand at the door (they’ve been there for years, but suddenly other people are discovering them). I dispose of that wipe and grab a second one to use on my hands after I’ve selected my produce.  I grab a new wipe in the meat department after I’ve put meat in my cart.  I sanitize my hands after I get to my car.  This is not new.  I’ve done it for years.
  • I eat nutritious foods instead of junk. That means I usually cook at home instead of going out to eat.  You’d be amazed at what a difference it makes.  Really.  There is a ton of medical info about the link between nutrition and health.
  • If I go somewhere and someone shows up sick, I distance myself. Depending on the situation, I have been known to suggest that the sick person ought to go home and stay in bed instead of getting everyone else sick – and after that, I make a point of inquiring if that person is healthy before gatherings, explaining that I don’t associate with people who won’t stay home when they’re sick. It makes the point quite well and raises awareness within the entire group, which results in people calling and saying they can’t make it when they’re contagious, which results in everyone being healthier.
  • If I attend a meeting, I carry sanitizing wipes (Clorox, Lysol, etc.) and clean the table where I’m sitting to reduce my exposure to germs. I don’t make a big show of it; it can be done unobtrusively, and there are people who have talked with me while I’m cleaning the table who don’t realize that’s what I’m doing.
  • I have given up some activities, such as teaching Sunday school, because the germ exposure is too great.
  • I do my grocery shopping in off-hours, so there aren’t as many people around, thus limiting my potential exposure.

Other people have different strategies depending on their needs.  When my daughter was in college, she carried Clorox wipes in her backpack and always wiped down her desk/chair in every classroom.  I talked with a teacher once who taped a line on the floor around her desk, and kids in the class knew that if they had a cold, they had to stay outside that line.  The point is that people who need to protect themselves already know how to do so. There are many invisible illnesses similar to mine. You might be surprised at how many people are on immunosuppressing medications.  We find ways to cope.

The current situation means that it’s no longer socially acceptable to be out in public when you’re sick, and I think that’s a good thing.  But I should not have to stay home when I am not contagious just because it will assuage your conscience and make you feel virtuous, as if you’re protecting me.  Decisions about how I protect myself should be a private matter between me and my doctor.

Grocery Shopping is different now. There used to be only 2-3 people in the store in the mornings.  Now, the parking lot is half-full at 7 a.m. when the store has special shopping hours set aside for those who are at-risk.  Didn’t all these people care about germ exposure before?  I like the idea of one-way aisles, not so much for social distancing, but for the improvement in traffic flow.  I’ve heard that some stores police the entrance and ban people not wearing masks, but have not encountered that myself.

Churches in my state are preparing to begin meeting again.  And while I understand that church leaders have a difficult task with voices coming at them from every side, sometimes I wonder if they’re bothering to listen to any of those voices, or if they’ve already made up their minds and don’t want to be confused by the facts.  Frankly, I am fed up with people who know nothing about being immunocompromised telling me what to do.  I research on reputable medical sites, and take medical advice from my physicians, not from pastors.

Recently our church leadership made an announcement, which I’m guessing they think is compassionate, but is not. It is offensive.

When we do come back, I want you to know that we will follow the CDC guidelines.  We need to do that.  We need to make sure we are doing our part, that we are a good witness to the people in and around us, and even in our community. 

And I want to say this:  if you are medically vulnerable or fragile, please, you’re gonna need to stay home for the live-stream at first, for a little while.  We just need to be careful.

We need to be careful?  Is there a mouse in your pocket?   am already careful.  My presence is not going to make anyone else sick.  The presence of other healthy people is not going to make me sick.  Wouldn’t it make more sense to tell sick people that they need to stay home?

Since when do we announce to people that they aren’t welcome in our churches?  I feel like I’ve been told that I’m not wanted, and that despite my dozen years of experience in living life immunocompromised, suddenly the ignorant opinions of people who know nothing about it matter more than people who actually know about the situation.

Furthermore, this is discrimination.  The CDC doesn’t merely talk about those who are medically vulnerable.  What they talk about is those at increased risk.  Are we going to have bouncers instead of greeters at our church doors, telling fat people that they need to stay home?  Having a BMI over 40 lands you on the at-risk list.  Will the bouncers be asking for ID, carding people and turning away everyone over 65? They’re on the at-risk list.  There is no excuse for singling out those with medical conditions and telling us that we need to stay home.  Either say nothing, or include everyone who is at risk.

The pastor’s statement tells me that the people making these pronouncements have not actually read the CDC’s website, because the CDC is quite clear that they are not telling people what to do or issuing directives to churches.  It’s not legal for them to do so.  The CDC offers “general considerations” and allows churches to make their own choices.  Shouldn’t pastors do the same and allow congregants to make their own choices?  The CDC recommends offering options (not mandating them).  Dictating that one small subset of the at-risk population needs to stay home is vastly different from offering options to all those who are at-risk and letting people decide for themselves.


Credit: CDC Website

We are adults, not two-year-olds.  Allow people to exercise some personal responsibility.  People with no experience and no qualifications need to quit dictating how others ought to protect themselves from germs.  People who are immunocompromised have multiple doctors they can consult about this issue, and are perfectly capable of protecting themselves.  I’ve been sick less in the past dozen years of being immunocompromised than I ever was when I was “healthy” because I pay more attention to preventing the spread of disease.  Let’s quit pretending that people are somehow safer at home.  Don’t tell people they aren’t welcome in church.

If you are immunocompromised, then talk to your doctor about what steps you need to take.  Do not get your information from google or instagram or news reports.  There are a number of articles, both for physicians and patients, in the COVID-19 section of Up-to-Date‘s website.  According to Up-to-Date, rheum patients on immunosuppressants are not at increased risk from Covid-19.  Other reputable sites include American College of Rheumatology and  European League Against Rheumatism.  I especially like Johns Hopkins‘ list of what patients can/should do and not do.  Nowhere does any medical site tell healthy patients to stay home.  That’s politicians practicing medicine without a license. Grocery stores, churches, and other places setting policies need to allow people to consult their doctors and make their own decisions. Stop listening to politicians for medical advice.

ECG Kindergarten

An electrocardiogram measures the electrical signals that travel through the heart while it beats.  Doctors are looking at how long it takes the electrical wave to pass through the heart, as well as how much signal there is.

The printout from an ECG is more than just a bunch of squiggly lines.  A closer look will reveal that not only are there squiggly lines, but there are also a few letters and numbers scattered about the page.  What does it all mean?

ecgStrip Leads

All Those Wires

If you have an ECG done, you’ll rest flat on your back and they’ll hook up a bunch of electrodes. It does not hurt.  These electrodes allow the doctor to look at the heart’s electrical activity from different angles.

To illustrate how this works, consider these pictures:


These pictures are quite different but they’re all photos of the same thing, just from different angles.  Likewise, the different leads used in an ECG give doctors heart-activity pictures from a bunch of different angles.  It’s one heart, but the electrical waves look different depending on your perspective.

Chest Electrodes and Their Leads

Six electrodes are attached to the chest at specific places to provide a picture of how the heart is functioning. These six chest electrodes show the electrical signal looking from the horizontal plane.

  • V1 and V2 look at the heart from the center (septal)
  • V3 and V4 look at the heart from the front (anterior)
  • V5 and V6 look at the heart from the side (lateral)

Limb Electrodes and Their Leads

There will also be an electrode for each limb: right arm, right leg, left arm, left leg. One peculiar thing is that the leg electrodes can be positioned anywhere between your torso and ankle.  As long as they’re the same location on both sides of the body it doesn’t seem to matter (I’ve had them near my ankle and also had them on my lower abdomen, and was confused about the variation depending on who’s doing the test – but now it makes more sense).  These limb electrodes generate views from a vertical plane.

  • When measuring the flow of electricity toward the right arm, this is called augmented vector right (aVR)

  • When measuring the flow of electricity toward the left arm, this is called augmented vector left (aVL)
  • When measuring the flow of electricity toward the left foot, this is called augmented vector foot (aVF)
  • When measuring the flow of electricity toward the right foot – nope, that doesn’t happen. They only consider the left electrode; the one on the right is neutral.


Maybe you’re puzzled, as I was, about how it can be a 12-lead ECG when there are only ten electrodes (6 chest + 4 limbs).  It turns out that leads are not synonymous with electrodes.  The six electrodes for the chest are the same as the leads, but to understand the others, we have to recognize that those leads are made up of pairs of electrodes.  Think back to high school science class and what we learned about electricity.  Or maybe it might help to picture the terminals on your car battery, where we know that electricity flows from the negative to the positive.

An ECG also measures the flow between the limb electrodes (from negative to positive):

  • Lead I measures the flow from the right arm’s electrode to the left arm’s electrode
  • Lead II measures the flow from the right arm to the left leg
  • Lead III measures the flow from the left arm to the left leg

If you ever want to have even a fuzzy idea of what your ECG shows, it’s important to know about the leads, because the printout of your heart’s rhythm will reference those leads.  The letters and numbers on the ECG’s printout are referring to the lead used for that portion of the tracing.  The ten electrodes give twelve leads: six chest and six limb.

The Strip (Printout)

The printout from an ECG shows the heart’s electrical signal as waves.

  • If there is no electrical impulse, the line on the ECG is basically flat. This is called the baseline.
  • When an electrical impulse is travelling toward a lead, the line on the graph will move upward.
  • When an electrical impulse is travelling away from a lead, the line on the graph will move downward.

Just as the front and back of my nativity scene look very different, waves look different depending on which lead is being used.  For example, this shows the same heartbeats as seen from two different leads:

ecg updown

But what does it mean?  Notice that the squiggles seem to have a pattern.  Every distinct portion of the ECG means something specific. First the heart is at rest, and the horizontal line showing no electrical activity is the baseline.

ECGPartsPtoT in colorThe P-wave indicates the heart’s electrical signal traveling through the atria (top chambers of the heart).

Following the P-wave, the QRS complex shows the electrical signal traveling through the ventricles (bottom part of the heart).  When this happens, the ventricles contract and the atria re-set.

The T-wave indicates that the ventricles are resetting and getting ready for the next heartbeat.

ecg contractions

When we combine what we know about leads with what we know about these waves, we can look at the printout from an ECG and see how it all fits together.  This illustration is color-coded to show which leads view the heart from different angles, and where that information shows on the ECG’s printout.

Certainly this isn’t enough information to allow patients to read an ECG, but it does give us some background to have a hope of understanding what doctors are saying if they ever attempt to explain what they’re seeing on the printout of our electrocardiogram.

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About Pericarditis ECG’s:

Technology as health tools

I thought that being an RA patient was a full-time job.  If so, then taking care of an aging parent qualifies not just for overtime, but for double-time! It is exhausting, which hasn’t been so good for my RA.  Fortunately, I’ve learned a few things that have actually helped me improve my own health.  My brothers are assisting with mom, and between us all we’ve done a few things that have helped my mom to be in better health now than she has been in at least a decade.  Two of those things we’ve done might be helpful for RA patients, too.  Technology is great.

The first thing we did involved gadgets.  We got Mom a Fitbit Charge2 (and an iPhone). There’s some interesting research showing that use of a pedometer can ease RA fatigue, so we might all want to make ourselves get up and get moving. If all you want is a pedometer, spend $5 at WalMart.  The fitbit does so much more than count your steps, though.  This is a pretty neat little gadget. It’s a wristwatch. It’s an exercise tracker. There’s a setting that will make the thing vibrate every hour if you haven’t taken at least 250 steps (but not at night), so you get a gentle reminder to get up and get moving (which I need).  I knew that with my RA diagnosis I’d learned to conserve steps, but didn’t realize quite how sedentary I’d gotten until I started looking at my step-counts. You can set a goal for how many steps you want to take each day, and when you reach your goal, the fitbit congratulates you 🙂  Adding in an app to sync the fitbit with your phone makes it easy to set exercise goals, sleep goals, and even track how much water you drink each day.

The next thing we did was take a look at mom’s glucose readings.  (skip this paragraph if you don’t care about diabetes) There have been problems with mom’s medicare-approved glucose meter, the most significant being that mom’s anemia is severe enough that the meter often gives errors instead of reporting results.  Nearly as important, imo, is that the black numbers on a grey background are nearly impossible for her to read. Why Medicare pays for something that’s basically useless, I don’t know.  We found a solution! We bought a meter that is able to give results in spite of the anemia, and which has a white background and extra-large numbers so that mom can read the display. This solves both problems. (OneTouch Verio, if you’re in need of a good glucose meter.)  What we’re really liking is that this meter syncs with the OneTouch Reveal app on mom’s phone, so there is an easily-viewed record of all mom’s glucose readings.  We showed her doctor at the last appointment, and the doctor loved it. My brothers and I also put the app on our phones and logged into mom’s account, then set reminders to check mom’s glucose readings about 10 minutes after her meal times.  It’s nice to see those numbers and know that mom’s okay. Before switching to this meter, we’d asked her to text us every time she tested, which she found a little more cumbersome than she wanted to deal with. Now she just tests like normal, and we can see her numbers. The way the report is set up, it’s easy to look at it and see patterns.  “Gee, mom, you’re always high at lunch time; maybe you should consider changing what you eat for breakfast.” We’re finding the right balance between, “You’re an adult; do what you want,” and “Given your family’s life expectancy, you probably have another 20-25 years; controlling your glucose will have a significant impact on what those years are like, so you might want to get this under control.” If her numbers are high, then my brother texts, “What did you eat?!” and that helps her be mindful of her diet. If she doesn’t post something, or if her reading is low, I contact her to make sure she’s vertical and not in need of assistance.  Never again will she nearly die because nobody knew she was sick.

The final thing we did that seems to be helping mom tremendously, and is helping my brothers and me lose weight, too, is set up a free MyFitnessPal account. We all set up accounts and friended one another so we can help mom keep track of what she’s eating and how that affects her glucose levels. I know that the fitbit app allows tracking of what you eat, but we’ve found MFP to be easier to use.  It also displays the info we want (and it syncs with the fitbit so the data is both places).  We did the math to help mom figure out how much protein and how many carbs she should be eating (and did the same for ourselves). We named the meals with that information because she was having a tendency to forget, so, for example, her meal names are:

  • 7:30 am: Breakfast (32g carb, 15g protein)
  • Noon: Lunch (32g carb, 15g protein)
  • 4:30 pm: Dinner (32g carb, 15g protein)
  • 7:30 pm: Bedtime snack (32g carb, 15g protein)

Combining these three things (three apps on our phones) has made it really easy for mom to see the correlation between what she eats, how much she moves, and what happens to her glucose. She thought she was controlling what she ate, but seeing exact protein:carb numbers has been extremely helpful. She got her A1c down to 7.0 ! It helps me, too, because I can do a virtual check on my mom at any time.  Honestly, it was exhausting when I had to drive to her house  Getting mom to really get things under control with the help of these tools (apps) has made my fatigue level decrease 🙂  If you have diabetes, or are caring for someone with diabetes, maybe these things can help you, too.

As for RA, I find these apps quite useful in a couple different ways.  First, using MyFitnessPal makes it easier to keep macronutrients in the right proportions, which means that I have to eliminate foods that provoke inflammation, so my disease is better controlled. As a bonus, eating the right proportion of macronutrients means that I don’t get hungry between meals so am not tempted to snack.  Second, the “friends” aspect of MyFitnessPal means that others in my family can see what I eat, which inspires me to make choices that I won’t be ashamed to have them see :).  Finally, getting a fitbit has me moving way more than I used to. Although it seems counter-intuitive, the extra activity actually decreases fatigue.

I’m looking forward to browsing the iMedicalApps site to see what other helpful tools might be out there!