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.

@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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@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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@contentandwell, I am sorry for your situation. Have you ever tried starting a new hobby? I have found myself in a similar situation to you. I work from home, and I stay at home in case I should need to visit my immune compromised parents. I only venture out when necessary and found myself with the same isolating thoughts you express. I remembered back to days with my grandma who taught me how to crochet some 30 years ago, and I found a ball of yarn in the house and tried it again. Now I am "wasting" hours a day making stuff that probably no one wants (it really is a lost art). I find myself looking at the clock and hours have gone by. I know that people often poke fun at Pinterest, but there are literally 1000s of hobbies on there. You can order supplies from some craft stores and do curbside pickup.

Just an idea for you – take a peek online and find something you might like to do. YouTube can teach you almost anything you want to try! If I learned crochet, anyone can learn it. And I plan to donate all my scarves and blankets to our homeless shelter – keeps me busy, and keeps someone else warm. A double win!

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Happy Thursday everyone! I hope those of you on the east coast are braving the snow. Here in MN, we just don't have anything to discuss in terms of the weather. It's an usual December for sure.

We wanted to be sure you all saw the recent update from Dr. Poland. If you don't know, Dr. Poland is an infectious disease expert, and he is the head of Mayo Clinic's Vaccine Research Group. Since the beginning of the pandemic, he has been posting many videos a week with Q&A information about the pandemic, the virus, the safety measures, and now, the vaccine.

In this recent video, around minute 16:00 – 18:00, Dr. Poland talks about the vaccine related to transplant patients. We thought you all might like to hear this information, but please remember, the information about COVID is changing so quickly. The videos we post today could be quickly outdated with the release of new information. And also please remember, you should consult the transplant teams caring for YOU before you embark on any decisions to receive, or not receive, the new vaccines.

We will continue to update you with new information as it becomes available to us. In the meantime, make sure to get your COVID information from a trusted source, such as the CDC or your local health department or your transplant physicians. Take care!

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@keggebraaten

Happy Thursday everyone! I hope those of you on the east coast are braving the snow. Here in MN, we just don't have anything to discuss in terms of the weather. It's an usual December for sure.

We wanted to be sure you all saw the recent update from Dr. Poland. If you don't know, Dr. Poland is an infectious disease expert, and he is the head of Mayo Clinic's Vaccine Research Group. Since the beginning of the pandemic, he has been posting many videos a week with Q&A information about the pandemic, the virus, the safety measures, and now, the vaccine.

In this recent video, around minute 16:00 – 18:00, Dr. Poland talks about the vaccine related to transplant patients. We thought you all might like to hear this information, but please remember, the information about COVID is changing so quickly. The videos we post today could be quickly outdated with the release of new information. And also please remember, you should consult the transplant teams caring for YOU before you embark on any decisions to receive, or not receive, the new vaccines.

We will continue to update you with new information as it becomes available to us. In the meantime, make sure to get your COVID information from a trusted source, such as the CDC or your local health department or your transplant physicians. Take care!

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Thanks for the link to update. Makes perfect sense.

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@keggebraaten

@contentandwell, I am sorry for your situation. Have you ever tried starting a new hobby? I have found myself in a similar situation to you. I work from home, and I stay at home in case I should need to visit my immune compromised parents. I only venture out when necessary and found myself with the same isolating thoughts you express. I remembered back to days with my grandma who taught me how to crochet some 30 years ago, and I found a ball of yarn in the house and tried it again. Now I am "wasting" hours a day making stuff that probably no one wants (it really is a lost art). I find myself looking at the clock and hours have gone by. I know that people often poke fun at Pinterest, but there are literally 1000s of hobbies on there. You can order supplies from some craft stores and do curbside pickup.

Just an idea for you – take a peek online and find something you might like to do. YouTube can teach you almost anything you want to try! If I learned crochet, anyone can learn it. And I plan to donate all my scarves and blankets to our homeless shelter – keeps me busy, and keeps someone else warm. A double win!

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@keggebraaten Thank you, Kristin, for your caring response. I don't have a hobby as such, I used to do crewel a long time ago but with age my close vision has diminished a lot and it makes things like that more difficult. Back when I did it I had to be doing two things at once, that and generally watching TV since just the crewel couldn't hold my attention — I have some ADD. I actually am pretty busy though and most often do not get everything done that I want to do. That's why I am now an alumna mentor on Connect, lack of time for everything. Still though, I miss my real life, I miss having a social life and seeing my son and daughter, I miss going to my health club for exercise even though I am exercising a lot at home.

I was dealing with all of this fairly well but there was that light at the end of the tunnel – the vaccine – but now that light seems to have gone out. From what I have read this week it's somewhat up to the individual hospitals to decide what they want to do for their patients. I heard that Johns Hopkins is advising getting the vaccine and that Mayo says no. I have not seen a statement from my transplant center, Mass General. I have read that there is a feeling that any possible ill-effects associated with the vaccine would not be as bad as getting Covid so that is why many hospitals are in favor of their patients getting it. I have also read that the vaccines will not be as effective for those of us on immunosuppressants as they are for the general population, which makes sense. So, bottom line, even when we do get the vaccine we will have to continue to be very cautious.
Please do not take the preceding paragraph on transplant centers as gospel. It is what I have heard and read on various sources but I cannot absolutely vouch for it, although I do believe the last two sentences make a lot of sense.

Kristin, that's such a great idea to donate your crocheted things to a homeless shelter. I'm sure they will be much appreciated. I tried crocheting when I was pregnant with my daughter and made her a darling "sack" type of thing. It was very basic and that's as far as I ever got with it.
JK

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I had a liver transplant in 2008 and am going well. On Dec 29th I tested positive for Covid-19. Very mild symptoms but my local doctor recommended I get an experimental drug that may relieve some symptoms due to being a "high risk" patient because on transplant, 80 years old and other complications. Today Dec 30th I received Bamlanivimab intravenously. I went through the 4 hour procedure and all vitals are normal but I have to quaranteen for 2 weeks and get a blood test sent to Mayo every week.
I just wanted to let everyone know there are experimental treatments out there. I am feeling fine and will try to update this of any complications.

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@jerrynord

I had a liver transplant in 2008 and am going well. On Dec 29th I tested positive for Covid-19. Very mild symptoms but my local doctor recommended I get an experimental drug that may relieve some symptoms due to being a "high risk" patient because on transplant, 80 years old and other complications. Today Dec 30th I received Bamlanivimab intravenously. I went through the 4 hour procedure and all vitals are normal but I have to quaranteen for 2 weeks and get a blood test sent to Mayo every week.
I just wanted to let everyone know there are experimental treatments out there. I am feeling fine and will try to update this of any complications.

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Thank you for your post. I'm interested to know what the Mayo transplant doctors thought of your experiential drug regime. Were they on board? Thanks. And I hope you are feeling better already.

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@jerrynord

I had a liver transplant in 2008 and am going well. On Dec 29th I tested positive for Covid-19. Very mild symptoms but my local doctor recommended I get an experimental drug that may relieve some symptoms due to being a "high risk" patient because on transplant, 80 years old and other complications. Today Dec 30th I received Bamlanivimab intravenously. I went through the 4 hour procedure and all vitals are normal but I have to quaranteen for 2 weeks and get a blood test sent to Mayo every week.
I just wanted to let everyone know there are experimental treatments out there. I am feeling fine and will try to update this of any complications.

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hope you get well soon..God bless you and happy new year..

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@jerrynord

I had a liver transplant in 2008 and am going well. On Dec 29th I tested positive for Covid-19. Very mild symptoms but my local doctor recommended I get an experimental drug that may relieve some symptoms due to being a "high risk" patient because on transplant, 80 years old and other complications. Today Dec 30th I received Bamlanivimab intravenously. I went through the 4 hour procedure and all vitals are normal but I have to quaranteen for 2 weeks and get a blood test sent to Mayo every week.
I just wanted to let everyone know there are experimental treatments out there. I am feeling fine and will try to update this of any complications.

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@jerrynord, I hope that your symptoms remain mild and go away soon. Please keep i touch – because we care about you.

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@jerrynord

I had a liver transplant in 2008 and am going well. On Dec 29th I tested positive for Covid-19. Very mild symptoms but my local doctor recommended I get an experimental drug that may relieve some symptoms due to being a "high risk" patient because on transplant, 80 years old and other complications. Today Dec 30th I received Bamlanivimab intravenously. I went through the 4 hour procedure and all vitals are normal but I have to quaranteen for 2 weeks and get a blood test sent to Mayo every week.
I just wanted to let everyone know there are experimental treatments out there. I am feeling fine and will try to update this of any complications.

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Thanks for letting us all know! You will be in our thoughts and many prayers!! Stay well!!

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I just had a kidney transplant 12/7/20, and asked my Mayo Transplant Nephrologist yesterday about the Covid vaccine, and said that if I am offered it to go ahead and take it, as it is not live and won’t hurt my transplant. However, she also agreed that it is unknown at this time how well it will work when we are severely immune compromised. (I am just under a month since transplant) That said, any immunity is better than no immunity. I wonder if we might need future “boosters” if we do get the vaccine?
I just returned home yesterday, and am so thankful to Dr. Prieto (my surgeon), my donor, and all of the Mayo Transplant team members!

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