COVID-19 and Transplant Patients

Posted by jolinda @jolinda, Mar 14, 2020

As a kidney transplant recipient I have been extra vigilant/worried about protecting myself as COVID-19 spreads. Like most transplant patients I am used to washing my hands, carrying hand-sanitizer, avoiding sick people, getting flu shots, etc. The COVID-19 outbreak has caused me to take additional steps to try to remain safe but I am worried for my health. I would like to hear what you are doing to stay safe and how you are feeling.

Interested in more discussions like this? Go to the Transplants Support Group.

@keggebraaten

Hi all, Rosemary is correct. Please know that Mayo Clinic is on top of this situation and your transplant teams are waiting for the official word that a vaccine is ready. Once that happens, the teams will need to gather to study the vaccine science of the ones released to be sure they are appropriate for you. This process takes time, so if the FDA releases authorization tomorrow, please don't expect to hear from your transplant team on Monday. They are waiting for guidance from the experts and officials, and then I am certain for those who are Mayo Clinic patients, we will have a statement that your teams will send to you. When that happens, we will certainly give a statement in this group. Just remember, the doctor caring for you should be the one you get your information from. We will provide a general statement here once one is available, but you should never do any new vaccines without consulting with your own care team. We are all impatiently waiting as this has been such a long haul. There's an end in sight - just try to be patient just a bit longer.

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@almula, I understand your concern. This is a question that is not being ignored by our transplant teams.
-Click on the blue 'In reply to' at the top of this reply.- you can read and feel some confidence that we are going to receive information when it is available to the transplant patients.

You are not alone, as we all wait and wonder.

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@scottij

My advice is to not come here for medical advice. Please contact a medical professional and avoid our "amateur hour"

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Please do not use condescending comments, I'm a four time kidney transplant and had my first surgery when I was four years old, I know plenty.....there is nothing amateur hour about me!

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@ca426

Please do not use condescending comments, I'm a four time kidney transplant and had my first surgery when I was four years old, I know plenty.....there is nothing amateur hour about me!

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My apologies. I was not attempting to be condescending to you. The reference to amateur hour is all of us on this site, not you in particular. We are not medical professionals and hence should not be dispensing medical advice nor taking it from this peer site.

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@almula

dear all I am liver transplants guy ..I like to know if the vaccine will be ok for us or we should wait ...please advice..

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@almula. At this point they don’t know if it’s safe for us because that testing has not been done.

As others have commented though, wait to hear from your transplant team. My gut feeling, along with what I have read, is that it will be well into 2021 or possibly even longer, before they know if it’s safe for us. The advice I read was to wait for “community immunity”, basically the same as herd immunity.

I realize that may not be what you want to hear, but it is what I have read. 😖
JK

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@contentandwell

@zon I was very discouraged and frankly, depressed, this week when I read that the vaccine was not being recommended for people on immunosuppressants. We were actually thinking that those of us with compromised immune systems would have some priority but my hopes were dashed with this news.

My husband is isolating to an extreme and expects the same from me. He says I can do what I want but if by that one in a million chance, taking precautions, I was to catch Covid and pass it to him I could never forgive myself if I did survive it. It's not as if I want to do anything extreme, I would simply like to do a couple of very low-risk things like go to the supermarket very early when it was still very empty. Things of that nature. We are having EVERYTHING delivered and now that we cannot visit with friends outside due to the temperatures, I am having a very hard time, it's like being in prison. It looks as if I will have to continue living like this for the foreseeable future. I believe what I read was that it will be at least close to the end of 2021 before immunosuppressed patients MAY be able to get the vaccine.
JK

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Jk, I’m very sorry that things are working out this way. I’m living the same type of existence. My wife see’s many patients a day and has multiple exposures. I hate the stress it puts on her knowing how awful she would feel if she brings it home. I can say that’s a stress I’ve heard over and over again from other health care workers. From my perspective I understand the risks and support her working. If she gets it and brings it home I won’t for one second be mad or upset. In a pandemic there are no perfect outcomes. I would recommend trying not to look to far ahead. Take this challenge a day at a time. It’s important to still look for the positive things going on. Today I’ve taken great joy in watching all the videos of health care workers getting vaccinated. I learned that vaccine is arriving in Rochester and I’m really excited for all the people at Mayo getting the shot. They are so deserving. I remember all there kind faces and looks of reassurance as I felt my road narrowing. I’ve use the same strategy now that I used living with chronic condition before transplant. Every morning I make a list of 5 kind things I can do for friends or family. When I go to bed I review the list. Some days it’s not quite the same, many days it’s more. But one thing it does is keep me in a good and give a sense of worth while social distancing. Everyone in our situation needs a plan to keep attitude up. Jk I wish you the best. I will share one more article that has a little more information on why we are where we are with the vaccine.
https://creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/covid-19-vaccine-immunocompromised/

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@danab

@zon Hi and thanks for the info on the Vaccine. Interesting I saw a video recently of a Dr who was testifing in the Senate about a drug he has had great success with but manly.when they get the paient early or is taken prior to infection. It was a Doctor Pierre Kory who was speaking on behalf of a group of doctors that have great data on a drug already in use. The plea was to get there data reviewed and approved by the powers to be. Sounded very promising. Here is a link to the video.
https://youtu.be/Tq8SXOBy-4w
Have a blessed Day
Dana

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Thanks for posting video!

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@zon

Jk, I’m very sorry that things are working out this way. I’m living the same type of existence. My wife see’s many patients a day and has multiple exposures. I hate the stress it puts on her knowing how awful she would feel if she brings it home. I can say that’s a stress I’ve heard over and over again from other health care workers. From my perspective I understand the risks and support her working. If she gets it and brings it home I won’t for one second be mad or upset. In a pandemic there are no perfect outcomes. I would recommend trying not to look to far ahead. Take this challenge a day at a time. It’s important to still look for the positive things going on. Today I’ve taken great joy in watching all the videos of health care workers getting vaccinated. I learned that vaccine is arriving in Rochester and I’m really excited for all the people at Mayo getting the shot. They are so deserving. I remember all there kind faces and looks of reassurance as I felt my road narrowing. I’ve use the same strategy now that I used living with chronic condition before transplant. Every morning I make a list of 5 kind things I can do for friends or family. When I go to bed I review the list. Some days it’s not quite the same, many days it’s more. But one thing it does is keep me in a good and give a sense of worth while social distancing. Everyone in our situation needs a plan to keep attitude up. Jk I wish you the best. I will share one more article that has a little more information on why we are where we are with the vaccine.
https://creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/covid-19-vaccine-immunocompromised/

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I love “ the list!”

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@almula

dear all I am liver transplants guy ..I like to know if the vaccine will be ok for us or we should wait ...please advice..

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@almula, please see this post from @keggebraaten, a transplant coordinator at Mayo Clinic
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/?pg=26#comment-446964
She explains that the Mayo Transplant team is "just now getting the scientific information they need to decide if they will be recommending this vaccine for our transplant patients. Once they have a decision, we will let you all know. However, please remember that you should get the final word from the team that is caring for you. General information is fantastic to have, but every patient is unique and should rely on specific information from their current doctor. Also note – the information regarding COVID changes by the hour as the experts learn more about this virus. Something published today could be out of date tomorrow. You can get the most up-to-date information from your local health department or the CDC website.

Here is the latest general patient information about the COVID vaccine from Mayo Clinic. This is not specific the transplant patients.
– COVID-19 Vaccine https://mcforms.mayo.edu/mc3100-mc3199/mc3127-72.pdf

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@scottij

My advice is to not come here for medical advice. Please contact a medical professional and avoid our "amateur hour"

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@scottij, you're quite right that when seeking medical advice, it is best to consult with a medical professional.

However, I strongly disagree with labelling the knowledge and experience exchange of transplant patients, donors and caregivers as "amateur hour." There is nothing amateur about first-hand experience with organ transplant. Recipients, donors and caregivers have knowledge and expertise to share that only someone "who has been there" can impart. I know you know this as a heart transplant recipient and someone who is moved to share their knowledge here in this forum and in a book. Instead, I refer to you and others who contribute to the collective knowledge of Mayo Clinic Connect as experts by experience.

It is possible that you made the statement with a wink and tongue in cheek. It is good to keep in mind that without tone of voice or body language, humor and irony can be easily misinterpreted in a discussion forum where we only have the written word. For that reason, we caution about the use of sarcasm and humor in the Community Guidelines. See item 2 here: https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/

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@colleenyoung

@almula, please see this post from @keggebraaten, a transplant coordinator at Mayo Clinic
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/?pg=26#comment-446964
She explains that the Mayo Transplant team is "just now getting the scientific information they need to decide if they will be recommending this vaccine for our transplant patients. Once they have a decision, we will let you all know. However, please remember that you should get the final word from the team that is caring for you. General information is fantastic to have, but every patient is unique and should rely on specific information from their current doctor. Also note – the information regarding COVID changes by the hour as the experts learn more about this virus. Something published today could be out of date tomorrow. You can get the most up-to-date information from your local health department or the CDC website.

Here is the latest general patient information about the COVID vaccine from Mayo Clinic. This is not specific the transplant patients.
– COVID-19 Vaccine https://mcforms.mayo.edu/mc3100-mc3199/mc3127-72.pdf

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Thanks a lot..

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