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.

As some of you know, my husband is a kidney transplant recipient. He is supposed to retire this year and has today decided it is probably 4/30. Escrow closes tomorrow on his condo, and he will be driving up here and stay for two weeks then return back. His work-from-home schedule is a bit unique as his work is 800 miles from here. He will be working from here during those two weeks so social distancing is not an issue! When he returns he will be probably working off-site most of the time. After his full retirement he will be taking off about 3 weeks and then return for chunks of time back to that company. He finally understands the importance of washing your hands and keeping everything clean! That's something we have practiced since late 2016 when he was transplanted. Now it is more important than ever!
Ginger

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@jdlogan65

Greetings Jolinda, I am a liver transplant recipient and have to do weekly labs. I make appointments at LabCorp and login when I arrive. I wear a face mask and take a Clorox wipe with me to open the door and wipe down the kiosk screen. I give them my cell # and self quarantine in my vehicle until they are ready to draw my samples. I wear sunglasses to protect my eyes. After my visit I go home and take my shoes off and sanitize them. I immediately take a shower and wash my clothes. Be sure to wipe down your steering wheel and door handles as well. I am cautious with my mail box and mail. I have also informed my other Doctors so I avoid the coughing people in the waiting room. They have adapted to my special needs and some have changed their policies and procedures for immune suppressed patients. Be proactive and healthcare professionals will help keep you safe. We are all in this together and need to inform our doctors that we have special needs during this COVID-19 Pandemic. Perhaps they will continue to isolate us from waiting rooms full of sick patients. Best wishes! JDLOGAN

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They closed our LabCorp branch. Now I have to go to the hospital, more expensive and more people.

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@rosemarya

@zon, and all new members-

I want to let you nknow that there is a Discussion Group that is about many other Transplant topics.
https://connect.mayoclinic.org/group/transplants/
I invite you to click on the following blue link, choose a topic, then post a question, comment, or a "Hi". Your experience makes each one an expert by experience. We are here to learn from each other and with each other. .

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https://www.ncbi.nlm.nih.gov/pubmed/21752960
This is the paper I mentioned which discusses the possibility that cyclosporin inhibits some coronavirus. Please note that it is dated 2011 and, of course, makes no mention of Covid 19. Even then, it applied only to some of the many coronavirus types.There are other papers which suggest that tacrolimus has the same properties. I mention these papers, not to give anyone false hope, but to suggest that our wonderful scientific community will, I'm sure, be looking at all these connections.

Here in Scotland, life has become very different especially for transplant patients. We are to be ' Shielded' – a new term to describe these strict measures- and must not leave home for the next twelve weeks. We must also practice social distancing, as much as possible, from our family members. It is okay but I already seriously miss having a cuddle! i am lucky as my husband is doing all our shopping and taking his 'hygiene' duties very seriously.

My thoughts and prayers are with you all in these difficult times.

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@wildcat
Thanks for finding this.
Great info and very relevant.

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@wildcat

https://www.ncbi.nlm.nih.gov/pubmed/21752960
This is the paper I mentioned which discusses the possibility that cyclosporin inhibits some coronavirus. Please note that it is dated 2011 and, of course, makes no mention of Covid 19. Even then, it applied only to some of the many coronavirus types.There are other papers which suggest that tacrolimus has the same properties. I mention these papers, not to give anyone false hope, but to suggest that our wonderful scientific community will, I'm sure, be looking at all these connections.

Here in Scotland, life has become very different especially for transplant patients. We are to be ' Shielded' – a new term to describe these strict measures- and must not leave home for the next twelve weeks. We must also practice social distancing, as much as possible, from our family members. It is okay but I already seriously miss having a cuddle! i am lucky as my husband is doing all our shopping and taking his 'hygiene' duties very seriously.

My thoughts and prayers are with you all in these difficult times.

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Good to know as I was worried about the opposite effect of taking Tacrolimus. Reading into further articles mentioned I get the impression Tacrolimus is twice as strong as Cyclosporin for inhibiting certain viruses. I will bring this up at my Mayo appointment, if it isn't cancelled, and let everyone know.

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@jerrynord

Good to know as I was worried about the opposite effect of taking Tacrolimus. Reading into further articles mentioned I get the impression Tacrolimus is twice as strong as Cyclosporin for inhibiting certain viruses. I will bring this up at my Mayo appointment, if it isn't cancelled, and let everyone know.

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@jerrynord I would love to know if my immunosuppressant, Sirolimus, has the same effect.
I did read in studies that people taking immunosuppressants did not seem to have a greater risk if they contract COVID-19.
JK

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@jdlogan65

Greetings Jolinda, I am a liver transplant recipient and have to do weekly labs. I make appointments at LabCorp and login when I arrive. I wear a face mask and take a Clorox wipe with me to open the door and wipe down the kiosk screen. I give them my cell # and self quarantine in my vehicle until they are ready to draw my samples. I wear sunglasses to protect my eyes. After my visit I go home and take my shoes off and sanitize them. I immediately take a shower and wash my clothes. Be sure to wipe down your steering wheel and door handles as well. I am cautious with my mail box and mail. I have also informed my other Doctors so I avoid the coughing people in the waiting room. They have adapted to my special needs and some have changed their policies and procedures for immune suppressed patients. Be proactive and healthcare professionals will help keep you safe. We are all in this together and need to inform our doctors that we have special needs during this COVID-19 Pandemic. Perhaps they will continue to isolate us from waiting rooms full of sick patients. Best wishes! JDLOGAN

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Greetings-
Thank you for sharing your navigation of getting weekly labs. 🙏

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@gingerw

My husband is a kidney transplant patient, receiving his kidney 10/1/2016. Just yesterday some of his co-workers came to him and asked why he was still there, not working from home. He went to the vice-president of the company, who sent him home. First he got software and permissions for installing company software on his personal computer, and the IT unit created a new drive that he and others will access for joint projects. He is about three weeks away from retiring after a 40 year career at the same company. He will go in tonight to get some equipment to bring home and work on, then return it on Saturday and work all day with fewer people there. The biggest obstacle for him will be lack of people contact face-to-face, as he is very much a people person.
Ginger

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Sounds like me. I am going a little stir crazy cooped up at home. Any business I have to take care of is extremely difficult. In Mn. Bank lobbies are closed-government buildings are closed so even if you now have all this free time it’s very difficult to get anything done. I had to chuckle when you mentioned your husbands co-workers admonishing for being at work. I work with outside vendors on a daily basis and they all pretty much know about my transplant. And when they started to quiz me as to why I was still working in a job that had such a high volume of foot traffic I started to consider a LOA. But it wasn’t until I got a text message from my daughter in all caps that I did the right thing. Hope to get back to work in the upcoming months and until then its me and the dogs and a very long honey-do list.

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I did not see Sirolimus mentioned.

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@wildcat

https://www.ncbi.nlm.nih.gov/pubmed/21752960
This is the paper I mentioned which discusses the possibility that cyclosporin inhibits some coronavirus. Please note that it is dated 2011 and, of course, makes no mention of Covid 19. Even then, it applied only to some of the many coronavirus types.There are other papers which suggest that tacrolimus has the same properties. I mention these papers, not to give anyone false hope, but to suggest that our wonderful scientific community will, I'm sure, be looking at all these connections.

Here in Scotland, life has become very different especially for transplant patients. We are to be ' Shielded' – a new term to describe these strict measures- and must not leave home for the next twelve weeks. We must also practice social distancing, as much as possible, from our family members. It is okay but I already seriously miss having a cuddle! i am lucky as my husband is doing all our shopping and taking his 'hygiene' duties very seriously.

My thoughts and prayers are with you all in these difficult times.

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To you who are commenting about this article, I urge you – Please note that it is dated 2011 and, of course, makes no mention of Covid 19."

Background:
This post is in response to a questionable statement made in another discussion several days ago. The member had heard "that both cyslosporin and tacrolimus have been effective in stopping the replication of some types of coronavirus in the past." Not wanting to start a rumor or spread false information I asked for someone to share where that information originated. I want to thank @wildcat for locating and sharing the information with us in the COVID-19 discussion.

I beg all of you to remember that scientists are constantly researching and exploring medicines and treatments even in the best of times – that is what they do! Please take this article and information for what it is, namely research. Please do not take it out of context.

Let us be careful to not misinterpret the results as they are 9 years old. Instead take it a a sign of hope and give credit to our transplant researchers who are always looking out for our well-being.

@jerrynord, @jolinda, @contentandwell, I hope this makes sense.

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@rosemarya

To you who are commenting about this article, I urge you – Please note that it is dated 2011 and, of course, makes no mention of Covid 19."

Background:
This post is in response to a questionable statement made in another discussion several days ago. The member had heard "that both cyslosporin and tacrolimus have been effective in stopping the replication of some types of coronavirus in the past." Not wanting to start a rumor or spread false information I asked for someone to share where that information originated. I want to thank @wildcat for locating and sharing the information with us in the COVID-19 discussion.

I beg all of you to remember that scientists are constantly researching and exploring medicines and treatments even in the best of times – that is what they do! Please take this article and information for what it is, namely research. Please do not take it out of context.

Let us be careful to not misinterpret the results as they are 9 years old. Instead take it a a sign of hope and give credit to our transplant researchers who are always looking out for our well-being.

@jerrynord, @jolinda, @contentandwell, I hope this makes sense.

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@rosemarya I would like to add that I know first-hand how quickly researchers are responding.
Last week my niece and her research team at the U of Minnesota immediately set aside their long-term stroke research, and within 48 hours applied for and received a grant, and started a study to identify effective treatments to prevent or mitigate Covid-19 in people who are known to be exposed, but are not yet showing severe symptoms. (There are also studies there for developing treatments for the currently infected, developing a vaccine, and quickly making basic ventilators from readily available supplies, among others. The teams are working round-the-clock to find answers, while putting their own lives on hold and relying on family & friends to care for their kids.
But we need to understand the process – postulate, experiment, test for effectiveness, repeat until an effective treatment is found, test for safety, apply for & receive approval, produce & disseminate.
This is not instantaneous, which is why it is so important to do all we can to slow the spread. And to not jump to conclusions based on early anecdotal reports of "breakthrough" treatments.
For the immediate future, our most effective treatments are distance or isolation, good sanitation and staying home (as in do not travel unless truly necessary – why I am still in South Texas instead of home with my family.)
Please everyone, take this seriously and stay safe.
Sue

REPLY
@rosemarya

To you who are commenting about this article, I urge you – Please note that it is dated 2011 and, of course, makes no mention of Covid 19."

Background:
This post is in response to a questionable statement made in another discussion several days ago. The member had heard "that both cyslosporin and tacrolimus have been effective in stopping the replication of some types of coronavirus in the past." Not wanting to start a rumor or spread false information I asked for someone to share where that information originated. I want to thank @wildcat for locating and sharing the information with us in the COVID-19 discussion.

I beg all of you to remember that scientists are constantly researching and exploring medicines and treatments even in the best of times – that is what they do! Please take this article and information for what it is, namely research. Please do not take it out of context.

Let us be careful to not misinterpret the results as they are 9 years old. Instead take it a a sign of hope and give credit to our transplant researchers who are always looking out for our well-being.

@jerrynord, @jolinda, @contentandwell, I hope this makes sense.

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I think it is good information and understand that COVID-19 is brand new and relevant studies are being done currently around the globe. I have NO intention of changing my meds or asking for something different. @rosemarya you are smart to point out it's simply a glimmer of insight and possibly hope. Still great info and I appreciate having been able to read the info. Thanks @wildcat

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