On June 14, 2022, I attended a virtual lecture given by the Kidney Foundation of Canada. Whether you are in end-stage kidney disease, have received a transplant or are immunosuppressed for another reason, we all ask ourselves a question: what do we need to know to protect ourselves in a world where covid is omnipresent, and health measures do not exist? Although with variants, covid seems less dangerous for healthy populations, for us it remains very worrysome!
Several specialists and patient-partners took of their time to come and talk to us about it. Without further ado, what do we need to know, and what are the official recommendations for us?
The two ways to protect yourself from Covid and other infections
The first specialist, Dr. Upton D. Allen, is Chief of the Division of Infectious Diseases at the Hospital for Sick Children affiliated with the University of Toronto. He told us about how to protect people who have a lower immune system (immunosuppressed, people with end-stage kidney disease with other related diseases (e.g., blood pressure, etc.), etc.
1st way to protect yourself: be your own protector
First, the person is responsible for protecting him-her-their-self! To do this, we need to wear a mask in public places, wash our hands frequently and keep a distance from people. Basically, we continue the basis of what we have been doing for more than two years!
2nd way: the protective cocoon
The second thing to do to protect yourself on a daily basis is to build what he calls a “protective cocoon”. What we want is to make sure that the people closest to us are involved in protecting us. It allows us to have a safe environment at home, and reduces the risk of contamination that can lead to unfortunate consequences on our health.
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The second thing to do to protect yourself on a daily basis is to build what he calls a “protective cocoon”. What we want is to make sure that the people closest to us are involved in protecting us. It allows us to have a safe environment at home, and reduces the risk of contamination that can lead to unfortunate consequences on our health.
People in our family bubble should all be fully vaccinated (unless medically contraindicated for them, obviously) and follow the same protective measures as the person with the lower immune system (wear the mask and wash their hands frequently). With their help, the person at risk is at least lucky enough to have a safe place for them; their own home.
What to do when you have children/teens at home
Several people who attended asked themselves the same question as me; What do you do with a child at home who is socializing? It’s quite simple for my boyfriend and I to protect ourselves, but we want his daughter to have a fulfilling social life, despite the need to offer me a protective cocoon.
What he recommends is to create mainly planned interactions. Let’s take for example if my daughter-in-law has a birthday that she wants to attend to. We would call parents in advance to ask them to be vigilant for covid symptoms in children and adults present, so that they can call us immediately to pick her up if there is ever a risk. If the children are doing something in a public place and we are not there, we will ask the supervising parents to pay attention to the environment. They will ask my daughter-in-law to wear a mask if the environment is shady.
If it’s with her classmates, since she doesn’t wear a mask in shcool with them, she doesn’t need to wear one with them. In case of a dubious situation (like, does a child have allergies or covid?), she could stay there but would wear a mask, and would try to stay away from the shady child. 😛
We were already doing this in our interactions with our families and friends, and we will have to learn to be comfortable with the generalization of this way of working. She can see her people as much as she wants, but we have to be careful.
We talked about it with my boyfriend’s daughter and her mother, and both are very understanding. We continue to live our lives, but we are vigilant! I am really grateful to them for giving me this protective cocoon, which allows me to be relaxed at home! ♥
Possible treatments related to covid
He also told us about two possible treatments: Paxlovid and Evusheld.
Paxlovid
Maybe you’ve already heard of Paxlovid? This medication helps to temper the symptoms of covid. It is currently the only drug that can be taken when you are declared positive for covid and you are among the populations at risk of developing serious complications of covid (There is another one given to pregnant women, Sotrovimab). Paxlovid should be taken within the first 5 days after testing positive for covid.
A friend with kidney failure told me today that her nephrologist recommends that patients who have less than 30% kidney function (stage 4 and 5) call their nephrologist to be prescribed it, as it could sometimes have a detrimental effect on your kidneys. In any case, calling your healthcare team to tell them that you have covid and asking them what to do is a good idea!
Evusheld
Evusheld is a drug used in prophylaxis (to prevent disease) in some people at high risk of complications related to COVID-19.
As I understand it, this drug is especially useful for people who received the vaccines when they were already immunosuppressed. Because of that, they didn’t have as much protection with the vaccine as the general population. The drug does not replace vaccination in at-risk populations at all, but can be an additional protection, as indicated in this sheet from the Government of Quebec.
It may also be useful in the case of a person who cannot be vaccinated due to medical contraindications (e.g., allergy or other).
Here’s how Evusheld works: neutralizing antibodies created in the lab are injected into the bodies of people who need them, in an attempt to protect themselves against covid. So, rather than relying on the person’s body to create antibodies, they are given already existing ones since their body does not produce them as well as in other people. Antibodies work for about 6 months.
To find out if we can benefit from this medication, we must talk to our doctor, who will judge if it is necessary for us or not. In my case, there is no reason for me to take it since I am not transplanted and have been vaccinated. On the other hand, knowing that there are certain drugs that can provide antibodies even when our body no longer produces them as well as before, I find that cool to know and reassuring for after the transplant!
The horror of dialysis units at the beginning of the pandemic
We then had a presentation from Dr. Veronica Silva, nephrologist. She told us about the horror experienced at the beginning of the covid pandemic on dialysis floors in hospitals.
She told us about the large number of patients who were infected directly on the dialysis floors in Québec, when we knew almost nothing about the virus. The amount of infected patients was very large, and infected people often had very serious consequences, up to death. Since hemodialysis is done 3 times a week in the hospital, for 4 hours each time, people build deep bonds with other patients. Imagine the mental impact of seeing friends and/or patients disappear one after the other…
Now we are not in the same situation on the dialysis floors. After 2 and a half years, we know more about covid and how to prevent it, although it is still a brand new disease. Masks will remain mandatory for a long time in Québec on dialysis floors, employees won’t go to work if they are sick, hand hygiene is respected. If a patient has symptoms, they should notify those treating them to provide the dialysis they need in an environment that is safe for others.
Dialysis in times of covid in certain difficult populations
Corinne MacNab, a social worker working with kidney patients, reminded us that although the ordinary world resumes its normal life without more restrictions, it is not the same in hospitals. Some people who need dialysis have mental disorders, since it can affect all populations. Compliance with mask wearing and hand washing can be very complicated to enforce in some cases! I hadn’t thought about that point of view!
Two testimonials on the daily life of immunosuppressed people in times of covid
Working with people in times of covid
The first testimony came from a person who is a photographer. He tells us how he can continue to work with people despite his immunosuppressed status. For a long time, he could not work because of the pandemic in order to protect himself. Today, his wife still works from home, but he has started working outside of the house again. To protect himself, he always wears a mask and makes sure to wash his hands often. He stays up to date in his vaccination, and uses his car now rather than public transport to stay safe. If he believes that a contract will not be secure for him, he does not take it.
Basically, he has resumed a normal life, but protects himself much more than before. In addition, as his wife is also careful, he has a protective cocoon at home that allows him to have a safe home!
Catching covid when you are immunosuppressed
The second person who came to testify is also immunosuppressed following a transplant she received 10 years ago. As soon as she felt symptoms of something, she called her nephrology team to determine what to do. With his symptoms, they asked him to go to the hospital immediately. She had caught covid, which then caused pyelonephritis (the bacterial infection of one or both kidneys) on her graft (the kidney she received from a transplant). She had to be hospitalized, but was quickly given Paxlovid and her kidney infection was also treated.
Today, her graft suffers no consequences from the infection it suffered. She was able to quickly get the care she needed for her recovery thanks to the speed of her call to her care team!
A necessary conference!
I want to thank the Kidney Foundation of Canada for organizing this conference, we needed it! Thank you for the information, it keeps us all healthier and safer! ♥
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