If you or your loved one has just had a diagnosis of COVID-19, your chances of surviving the illness will depend on your ability to gather your resources, make a plan, and adapt.
By Martha Campbell APRIL 19, 2020
As told to her daughter, Carrie Severino. This article is personal information, not medical advice. Please consult your doctor with any health questions and decisions.
The past two weeks have been a rollercoaster as my husband and I celebrated our 49th wedding anniversary, learned we were both COVID-positive, spent multiple nights we thought could be our last ones together, and finally received a surreal email from the Kent County Health Department declaring us free and clear of any COVID-related quarantine. We are now allowed to take part in normal life again with “no restrictions” (whatever that means under total lockdown).
My husband Mark and I are both medical professionals: he an oncologist, and I a retired community health nurse. We put all our skills to use in fighting this virus. Here are some of the things we learned that can help you if you or your loved one has just received a positive COVID diagnosis.
This Disease Is Wildly Variable
Both of us had COVID, and presumably the same strain. But we both had very different courses of the illness. For both of us, the major early symptom was a clear, runny nose, so unusually runny that it motivated my husband to call the Centers for Disease Control and ask about getting a COVID-19 test very early on. Until one of his close co-workers turned up positive, that wasn’t enough to qualify.
My disease never progressed beyond a worsening cough and shortness of breath. By that point my husband had become more serious and was on hydroxychloroquine and azithromycin. That’s when I started these medications as well. Whether because I had a milder case or an earlier drug intervention, my case never got worse than that.
The only other symptom I experienced was the loss of smell and taste that many have described. It was more frustrating than it sounds. While we were both exhausted — him from COVID and me from caring for him — we had to force ourselves to eat and nothing was appealing. I would test myself by opening a container of peppermint extract and taking a big whiff. For days, I couldn’t smell a thing.
My husband’s symptoms ultimately included all the typical ones: fever, shivering, night sweats, shortness of breath, rapid and shallow respiration, and exhaustion. His wasn’t just a dry cough, but sometimes a productive one.
If you or your loved one has just had a diagnosis of COVID-19, your chances of surviving the illness will depend on your ability to gather your resources, make a plan, and adapt.
Provide the Best Treatment You Can at Home
So much focus has been given to concerns about overflowing emergency rooms and hospitals and the lack of ventilators that we have often neglected the importance of good home care prior to, and hopefully instead of, hospital treatment. As heroic and dedicated as our hospital workers are, it is in everybody’s best interests to maintain your ability to stay at home. That will keep the hospital staff from being overwhelmed by patients and prevent you from infecting others.
You should always be in touch with your physician to look out for signs that you should transfer to hospital care. But here is what we learned to help us keep out of the hospital.
The key reason people go to the hospital with COVID is difficulty in breathing. When my husband started to feel his breathing become more strained, he asked his doctor to order an oxygen tank that he could use at home. Many people may not realize that home oxygen is even a possibility, but it is prescribed for many conditions and there are companies that provide oxygen with systems meant to be used by non-medical professionals, delivered through simple tubes into the nose.
Along with the oxygen, we got an oximeter to measure oxygen saturation in the blood. It’s the little device they often clip onto your finger in a hospital. They’re available at some pharmacies, and we later learned that the oxygen company had a few as well. Having the ability to monitor oxygen levels at home was key to being able to gauge whether it was still safe to be at home and whether things were getting better or worse.
Another simple technique that is now being employed widely in hospitals, is that of sleeping prone, on one’s abdomen. Many hospitals are trying to keep COVID patients face-down for 16 hours a day, with them sitting up the other eight. That maximizes the lungs’ ability to work effectively, which is hard on one’s back. For my husband it was particularly uncomfortable because of a previous neck surgery, but by monitoring his oxygen saturation we could see how helpful it was.
When his oxygen was at 92 percent on his back, it jumped to 97 percent on his abdomen. We would have had to double his supplemental oxygen to get that kind of improvement. When he didn’t want to stay in that position, I used several strategies to keep him there.
I would put on a podcast he likes to listen to and challenge him to stay on his stomach until it was done. I gave him a back massage and used a technique I had learned as a nursing student to help clear the lungs of children with cystic fibrosis, hitting his back with cupped hands. It seemed to shake loose some of the secretions, and afterward his coughs were more productive. Even if the prone position is too uncomfortable to maintain, keep the patient off his back and on his side. If he is in a chair, keep it upright, not leaned back.
A spirometer was another great tool I wish we had started using earlier. It is essentially a plastic tube you suck into, lifting a gauge or ball to hit certain targets. It’s often used in therapy to improve lung function or in recovery from surgery. Somehow, being able to focus on how high he could raise that little blue ball was so much more effective than just saying “breathe deep,” and as Mark has been regaining lung capacity this has helped him dramatically reduce his supplemental oxygen.
Equally as important for increasing the expansion and efficiency of the lungs is focused deep-breathing exercise. Try lifting the arms up near the ears and breathing in through the nose and out through the mouth. Do this in a slow and focused way — put your hand on your belly and feel it push out.
Almost any health program will tell you the importance of exercise and drinking lots of water. That goes double if you have COVID-19. COVID-19 sends microemboli (a small particle, often a blood clot) that can become caught in the bloodstream, damaging the heart, kidneys, and other organs. Water is important to prevent emboli and support kidney function.
A South Korean friend suggested that warm water is particularly helpful to redirect and block virus particles from continuing to infiltrate the lung. She also recommended a tea of ginger and garlic. For the less adventurous, regular tea with honey can make drinking more appetizing. Some think a twice a day gargle with lemon juice and salt water is effective.
Movement is important for keeping up lung function. If you are up for it, take walks, or use small weights, elastic bands, and exercise bikes. Even five minutes or less makes a difference. If the patient is already too tired to walk outside, taking a walk around the room every hour or so while awake will help keep up lung function and stave off worsening pneumonia.
Movement, water, and of course fiber will also keep the GI tract and bowels functioning properly. You can also stay ahead of any dreaded block-up by eating prunes, figs, or high-fiber cereal or proactively taking a stool softener.
Equipment and Items to Have on Hand
If you’re on the front end of COVID, here are the items I’d locate now and put in a place all together so you can easily access them. Put them back every time you use them so you don’t misplace them when you need them most:
Masks (for when people come to the door or you need to leave for blood draws and medical assessment).
Kleenex—bring a trash can near the bed, so it’s easy to dispose of used tissues.
Sanitizing wipes or spray and paper towel.
A box or basket in which you can put all your medications so you don’t misplace them. In our case that included hydroxycholroquine, azithromycin (to prevent bacterial pneumonia from developing), zinc supplements, aspirin (a regular 325 mg tablet twice a day to counter micro-emboli), and eventually prednisone (a steroid prescribed later in Mark’s illness to reduce inflammation once the virus is attacking the lung ). Have Tylenol or another acetaminophen product available to treat fever — some studies have shown that ibuprofen can exacerbate COVID and while they’re still preliminary, it makes sense to use an alternative out of caution.
A measuring cup for measuring liquids (aim for about eight 8-oz cups of liquid daily — water, tea, etc. — if kidneys and heart are functioning well) Gatorade or a similar electrolyte drink is also a good choice.
Pillows of all shapes and sizes—you’ll probably want them to help make the patient comfortable, especially on his or her stomach.
A Starbucks-type reusable cup with a top and a bendable straw. Staying hydrated is very important, and it’s easy for the patient to inadvertently tip over a cup, which is frustrating and creates unnecessary messes that can be difficult to clean, especially if someone is tired and hard to move out of bed. They also may need to be drinking while lying down, and a bendy straw makes this possible.
A notebook to record important information (more on that below).
A basket to keep cards you are receiving from friends, perhaps with stationery and a pen to write responses if you have the opportunity.
Extra sheets—night fevers and sweating may mean you want to change the sheets and you’ll want to have them ready to do so quickly when the patient is up.
Try to Stick to a Routine and Maintain Order
Staying organized in the key aspects of life, even amid the growing chaos, is crucial for navigating a period of high stress. Obviously your routine has to be adaptable to changing circumstances — every day was a different challenge during our most difficult week with COVID. But keeping up patterns of putting medicine in the same place, noting what the patient eats and drinks, and even knowing where to find your shoes or car keys if you needed to go to the hospital will save you stress in the long run.
My granddaughter used to remind me when leaving the house of the three things I always needed: keys, wallet, cell phone. I used this principle to have a mental checklist for whenever my husband woke up. I knew he needed his rest, so I maximized this time to get everything done at once: give him water to drink, have him take some deep breaths, take his oxygen saturation, and give him medications.
Don’t forget yourself in the routine. It’s like the old adage of putting on your own oxygen mask first so you’re able to help others. I found it kept me sane to make sure I got dressed first thing every day. When possible, shower and put on makeup. Remember that when you get the patient a refill of water to refill your water. When you get a plate ready for your patient, get one for you at the same time.
I tried to text my friends each morning to let them know how the night went, even if the news wasn’t good. I asked a few friends to notify different groups of people because I couldn’t call everyone I would have liked to. If I didn’t send out a message early on, I might get a barrage of phone calls or texts from concerned friends later in the day.
Make keeping good records a part of your routine. I kept a small notebook by the bedside to keep all the information in one place. Note the medications to be taken, and the time and dosage given. Keep track of vital signs—temperature, pulse, respiration rate (how many breaths taken per minute), oxygen saturation levels, and how many liters of oxygen are being given. Keep track of when and how much the patient eats and drinks.
This can be incredibly helpful to share with doctors as you are constantly assessing whether things are improving, holding steady, or further intervention is needed. Write down any directions from the physician so you don’t forget them with all that is going on, as well as doctors’ phone numbers so they are easy to access. You can also keep a list of things you need so you don’t forget anything when friends offer to go for groceries or to the pharmacy for you.
Plan for the Future
While everyone is hoping theirs will be the mild or even asymptomatic case, it is best to plan for all possible outcomes. You should regularly report your symptoms to your physician and keep in regular contact with him or her. This took my physician husband a day or two to remember himself.
Discuss with your physician the medications that may be appropriate for you and when you will take them. Make sure to tell or remind your doctor if you have any of the conditions that might make COVID more serious: high blood pressure, chronic lung disease, diabetes, obesity, asthma, compromised immune systems, or other conditions affecting your lung function. I reminded my husband to tell the doctors about his history of polio as a child, which still has lingering effects.
If you’re starting to get short of breath, discuss the availability of home oxygen, as well as the safe range of oxygen flow rates and at what oxygen saturation level hospitalization might be necessary. Oximeters are in short supply—look for one now. Spirometers are available for only $4-$12 on the internet, and hospitals offer them at bedside.
Decide now if you are willing to go on a ventilator to buy time for your body to heal. You may need higher levels of oxygen than your home system can deliver. Hospitals can offer additional high-oxygen delivery through a mask as a ventilator alternative. If you do not want to be on a ventilator (my husband didn’t), write a directive to communicate this and have it witnessed.
Explore with your doctor whether there are any medication protocols with pre-Food and Drug Administration-approval drugs that you might be eligible for, or whether plasma donations from COVID-19 survivors are available.
Know your plan if you have to transfer to a hospital. I packed a bag with a change of clothes for my husband and kept our shoes by the door and keys in the car. Find the medical insurance card. If you have to leave, grab the box with the current medications to bring along, both so the doctors know what they are and so you have them if a dose comes due before the hospital is able to take over. Bring your notebook with the medical stats so you can communicate them to the hospital staff.
When we did leave for the hospital, I couldn’t find my husband’s wallet, but luckily we had his insurance card ready to go. Pack an extra phone charger and always keep your phone battery full just in case. If you need gas in the car, you may need a friend to help get it for you, assuming he feels safe driving your vehicle. After my son, a car dealer, dropped us off at the hospital for testing, he joked “I don’t know how I’ll ever sell this car!” We have taken to calling it the Covidmobile.
Identify Your Team
Remember, you may be isolated, but you are not alone. You have a team around to help you: your physician and medical staff, your family, your friends, your religious community, even your pet. Our son made regular trips to the store and pharmacy to bring us the things we needed, leaving them outside our door. He often had to go to many stores to find scarce items, like our oximeter. For the final two hardest nights, he suited up with what protective gear he had and slept in our lower level to be nearby in case we needed help.
Countless friends and neighbors thoughtfully brought food and gifts. My good friend Marian knows exactly what types of comfort food Mark likes and kept us supplied with homemade rolls, applesauce, cooked peas and carrots, and peanut butter cookies. I set up a delivery spot—for us it was a large crate—outside the garage so friends could leave things there and I could retrieve them once they were safely away.
I soon learned that if there was more food than I thought I could eat, I should have someone else who could use it come and take a portion before I went to the box so I wouldn’t potentially contaminate it. Nobody wanted food once it had entered the “Covid Castle.”
I had several sleepless nights during which friends kept a virtual vigil with me. Margie, with whom I had spent lots of time just before my diagnosis, and miraculously wasn’t infected herself, stayed up a whole night with me to help me keep awake and monitoring Mark. Barb in Portland sent me beautiful prayers and music.
My friend Peggie in California stayed up with me another night while I had to monitor Mark’s oxygen every 30 minutes. She kept texting me hymns and music as well as prayers, including one she wrote herself. She would send me Bible verses to encourage me.
If you’re doing this for someone, try to send them the whole verse, not just the reference. To look it up takes several steps and it’s much easier for them if you text or email them the full thing. I had so many friends who were supporting us from afar. We called it “Praying in Place.”
There may be resources in your community you don’t know about. After my husband had already turned a corner I learned that a friend’s daughter had recovered from COVID-19. She offered to help me and was one of the few people who could have done so, even in my home, without worry of getting infected. (Yes, there are questions about how long immunity lasts, but most doctors agree that for several months at least a recovered patient should be immune.)
I’m looking forward to being able to help others once my husband has completely recovered. If you don’t have someone at home that can help care for you, it’s worth asking around because there may be somebody available to help that you don’t expect.
Meet Your Patient’s Deeper Needs
When in nursing school I studied Erik Erikson’s phases of psychological development. Some of the earliest stages that I have relived with my own children and grandchildren are those of Trust vs. Mistrust and Autonomy vs. Shame and Doubt. These are normally achieved at 18 months and three years of age, but when people are seriously ill, they often regress to the earlier stages. To get my husband’s cooperation with different aspects of his care, it was crucial to make sure these fundamental needs were being met.
We had several wonderful medical providers, two of whom I attribute much of his survival and whose advice he took precisely because they established his trust. As a physician, my husband was determined not to go into the hospital unless absolutely necessary and was very concerned about not losing control of his care. We both worried that going to the hospital would mean being separated from each other, maybe for good. A physician friend and my daughter’s sister-in-law, an ER nurse, both acknowledged and respected Mark’s goal to stay at home as long as possible, and he trusted that they weren’t trying to rush him into the hospital prematurely.
When we did go to the hospital, this doctor explained to Mark how he could simply get the full battery of tests to know whether there was organ damage, pneumonia, or a pulmonary embolism that are all treatable, even at home, with the right medications. He emphasized the need for information while letting Mark know he could go home if he decided that was best, recognizing his need for control.
Ultimately, after a chest X-ray, a battery of blood tests, and a consultation with the pulmonologist, that’s what he decided to do. Never one to gush, he joked, “Where else am I going to find someone who will rub my back 16 hours a day?” But he told his doctor that even if things were going to go south, he wanted us to be together.
“If I’m in a situation with this that is not going to get better, I do not want to be on a breathing machine. I want to be home with Marty so I can talk to her. She has been a wonderful wife to me and a wonderful mother. I could never have asked for more. And I would want to be home with her if I am not going to get better.”
Along with trust, the patient needs to maintain autonomy as much as possible. It’s challenging and humiliating as an adult to lose the ability to care for yourself. So look for ways to provide autonomy, recognizing that it’s important to set achievable goals. One day our goal was simply to have Mark butter his own bread and walk to the bathroom by himself. Another day I had him peel his own hard-boiled egg. If you find the goal you set is too high, drop back until you can find success.
It’s also important to acknowledge how hard the patient is trying and show him empathy, even when you are frustrated or scared that he isn’t doing enough. When I wanted Mark to keep moving, instead of telling him to get out of bed, I offered to prop him up in bed with pillows because he was maybe too tired to get up. Often he rallied at that and decided to move to a chair, implicitly acknowledging that he knew the repositioning was important as well.
My message was, “I know you want to do the best you can, and I know you’ll do as much as you can, you just let me know how much you can do.” When he was exhausted and uncomfortable on his stomach, I said, “I know you need some relief, why don’t you stay on your back for 15 minutes.” He got his relief, and then got back in the position we both knew was better for his lungs.
Prayers and Mantras
In times of crisis, it’s important to have simple principles to fall back on. My friend Barb taught me her short, emergency prayer I resorted to often during this ordeal: “Help me, help me, help me! Thank you, thank you, thank you!”
Another refrain I learned from working with mental health patients was “Be nice!” It’s even more important when you and your family members are under intense stress. I put this to work in action with another favorite reminder of mine: “Don’t insult the alligator until you’re on the other side of the river,” and my follow-up, “and then still don’t insult him.”
In the process of navigating this disease, we had bumps on the road where I was tempted to mouth off at a few alligators, like when the oxygen tank company initially lost our order and then two tanks in a row turned out to have faulty compressors so they weren’t delivering the full measure of oxygen. I managed to maintain my composure during the first mixup and by the time the third oxygen tank was delivered had befriended the company and delivery man enough that they brought their top-of-the line tank, after hours, and even managed to scare up a scarce oximeter to boot.
Everyone, from the doctors to the patients, is learning about this disease as they go. Mistakes are inevitable. For your mental health, you can’t let mistakes stop you in your tracks. You always have another chance to start again. I would remind myself that the goal is simply that next time I will make mistakes less often and less intensely.
Finally, never forget that the “perfect” is the enemy of the possible. Whether it’s in following orders to stay on your stomach, or getting the recommended amount of liquids, nutritious food, or movement, we are bound to fall short while under attack by a brutal virus. Do what you can, even if it’s less than you had hoped.
Many of the items on this list are ones I didn’t manage to keep up with myself or that I learned the importance of because I didn’t do them. Aim high, but don’t beat yourself up for not being able to achieve every goal. If you aren’t getting the vegetables in, grind up the greens and ginger and flax in a smoothie to start the day.
When my cousin sent us oregano oil, having heard it was helpful, Mark refused to take it, as a longtime picky eater and natural skeptic. So when I was massaging his back, I sprinkled on some of that oil, getting it in whatever way possible. After sweating through his sheets, Mark was too tired to get up so I could change them. I just folded another sheet and was able to get it underneath him so he wasn’t lying right on a wet sheet. Better than nothing.
We have been through a lot in 49 years of marriage, from births of our children, to deaths of our loved ones, from a life-threatening car accident, to cancer. COVID-19 may have been the hardest challenge we have faced, but it did bring us even closer to each other and forced us to rely even more fervently on God.
Mark went into the hospital on Good Friday and finally turned the corner on Easter Sunday. We took great comfort from the timing of that trial. After Mark left the hospital Friday night, I texted a friend, “We are in for the fight of our lives — I think we are up to it.” With God’s grace, we won the battle.
Martha Campbell is a retired community health nurse from Michigan.