1. < Transplants

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.

jerrynord | @jerrynord | Mar 22, 2020
In reply to @rosemarya "@almula, I see that you are a liver transplant recipient. I want to invite you to..." + (show)
@rosemarya

@almula, I see that you are a liver transplant recipient. I want to invite you to the Liver transplant support group and meet some other liver transplant recipients.
https://connect.mayoclinic.org/discussion/liver-support-group/

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I thought I was there but maybe not.

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jerrynord | @jerrynord | Mar 22, 2020
In reply to @rosemarya "@jerrynord, This is fantastic! I transplanted in 2009, too. At Mayo Rochester. I would love to..." + (show)
@rosemarya

@jerrynord, This is fantastic! I transplanted in 2009, too. At Mayo Rochester. I would love to continue a conversation with you in a liver transplant discussion where other liver patients can join in.
Let's take our liver transplant conversation to the Liver transplant support group.
https://connect.mayoclinic.org/discussion/liver-support-group/

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OK.

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zon | @zon | Mar 23, 2020

My family and I are practicing wide social distancing. We are only as safe as the people our families come in contact with. Only time I leave the house is for a run in the woods and with vogmask and if I see someone coming I make wide separation. I use insta cart to order groceries delivered. Have them leave groceries outside the door. It feels very similar to post transplant 2 years ago. I struggled with return of immune system and ended up in hospital once. One small positive about all this is education across society about vigorous hand washing and staying home if you are sick. Things we have already adapted to. Hope this sticks in years following this pandemic. It’s been a journey to get here and I wish everyone the best and Stay safe.

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1 reply
estrada53 | @estrada53 | Mar 23, 2020

I tell my family and friends: "welcome to my world"..

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almula | @almula | Mar 23, 2020
In reply to @jolinda "@ca426 You will find more information in The Journal of Renal Nutrition from a study conducted..." + (show)
@jolinda

@ca426
You will find more information in The Journal of Renal Nutrition from a study conducted by Linda Moore et. al. We are so blessed as a transplant community to have such amazing scientists researching on our behalf. The study looks at supplements and herbal remedies including but not limited to:

Vitamin C
St. John’s Wort
Herbal teas: green tea, chamomile, peppermint, dandelion...
Echinacea
Dong quai
Ginseng
Feverfew

Here is a portion of the article which I will cite below as well as a link to the Journal of Renal Nutrition:

"More research is needed regarding how transplant recipients could safely incorporate any of these products into their lifestyle. Until then, clinical teams should help transplant patients understand that these products will affect how their bodies absorb, distribute, metabolize, and excrete the antirejection drugs and could affect the outcome of graft survival."

1. Moore LW. Food, food components, and botanicals affecting drug metabolism in transplantation. J Ren Nutr. 2013 May;23(3):e71-3. doi: 10.1053/j.jrn.2013.02.002. PubMed PMID: 23611558
https://www.jrnjournal.org/article/S1051-2276(13)00061-7/fulltext
Foods known to interact with transplant meds are: grapefruit, grapefruit juice, pomegranate, Seville oranges.

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Hi, I read the research paper which dated in May 2013, I am not sure if the FDA or any other institutions have confirmed the recommendation of the said study. Do you have any new article that recommends the same findings of this study? ..regards

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jdlogan65 | @jdlogan65 | Mar 23, 2020
In reply to @naturegirl5 "@lisamb Thank you for your post. Did you receive your care and your transplant at Mayo..." + (show)
@naturegirl5

@lisamb Thank you for your post. Did you receive your care and your transplant at Mayo Clinic? It appears that you were transplanted in 2019-is that correct? How are you feeling? Are you self-isolating and what to do you do care for yourself? Anything you'd like to share about your journey would be most appreciated as I try to support our close friend with cholangiocarcinoma who is on the transplant list at Mayo-Rochester. Blessings to you.

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I was diagnosed with HCC in 2015. I was told to go home and was not likely to get a transplant. I called UNOS and was advised to go to Phoenix Mayo Clinic. They were so professional and said I would be listed on 6-22-18. I am from Sparks Nevada so I rented a Condo in Scottsdale. The day I was listed I received the call from Mayo to come to the hospital for the transplant. Wow! Post transplant they discovered I had Cholangiocarcinoma as well! OMG! Thank God it was discovered by pathology post transplant or I would not have received this special gift of life. I have already beat the odds by living 6yrs. Post diagnosis. I am coming up on my 2 yr. transplant anniversary 6-23-20. I am so blessed and grateful! I won’t let this COVID-19 take me out! I see familiar posts by some of my team! Thank you all so much! I am taking care to avoid any exposure!

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 23, 2020
In reply to @zon "My family and I are practicing wide social distancing. We are only as safe as the..." + (show)
@zon

My family and I are practicing wide social distancing. We are only as safe as the people our families come in contact with. Only time I leave the house is for a run in the woods and with vogmask and if I see someone coming I make wide separation. I use insta cart to order groceries delivered. Have them leave groceries outside the door. It feels very similar to post transplant 2 years ago. I struggled with return of immune system and ended up in hospital once. One small positive about all this is education across society about vigorous hand washing and staying home if you are sick. Things we have already adapted to. Hope this sticks in years following this pandemic. It’s been a journey to get here and I wish everyone the best and Stay safe.

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@zon, Welcome to Connect. I am glad that you found us in this discussion dedicated to living with COVID-19. It sounds like you have a fantastic family who has learned with you and supports you.
You mentioned running, do you encounter many other runners when you are out? I walk, and I am noticing fewer runners and walkers out and about. I wonder if some people are afraid to get out due to fear of coronavirus. Of course the weather plays a major role, too.

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2 replies
JK | @contentandwell | Mar 23, 2020
In reply to @jdlogan65 "I was diagnosed with HCC in 2015. I was told to go home and was not..." + (show)
@jdlogan65

I was diagnosed with HCC in 2015. I was told to go home and was not likely to get a transplant. I called UNOS and was advised to go to Phoenix Mayo Clinic. They were so professional and said I would be listed on 6-22-18. I am from Sparks Nevada so I rented a Condo in Scottsdale. The day I was listed I received the call from Mayo to come to the hospital for the transplant. Wow! Post transplant they discovered I had Cholangiocarcinoma as well! OMG! Thank God it was discovered by pathology post transplant or I would not have received this special gift of life. I have already beat the odds by living 6yrs. Post diagnosis. I am coming up on my 2 yr. transplant anniversary 6-23-20. I am so blessed and grateful! I won’t let this COVID-19 take me out! I see familiar posts by some of my team! Thank you all so much! I am taking care to avoid any exposure!

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Hi, @jdlogan65 Welcome to Connect.
That's unbelievable that you were told you would probably not get a transplant. I presume that was by a local doctor. More and more I am convinced that if you have a medical condition beyond something very ordinary you should go to a large medical center, preferably a teaching one. They see so much more so they know much more. I was diagnosed up here in NH after a very lengthy amount of time but then was treated in Boston at Mass General. I know now that if I am not diagnosed quickly I will head to Boston.

How fortunate you were to get a transplant so soon too. I presume your MELD was already high when you were listed. Your attitude about COVID-19 is perfect. I tell my son that I am invincible because he's such a worrier!
Stay healthy and be careful.

@rosemarya We have taken to walking on our street every day that the weather makes it possible. We have always had many walkers but now it is more than ever. We all are careful of maintaining a distance from each other too.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 23, 2020
In reply to @jdlogan65 "I was diagnosed with HCC in 2015. I was told to go home and was not..." + (show)
@jdlogan65

I was diagnosed with HCC in 2015. I was told to go home and was not likely to get a transplant. I called UNOS and was advised to go to Phoenix Mayo Clinic. They were so professional and said I would be listed on 6-22-18. I am from Sparks Nevada so I rented a Condo in Scottsdale. The day I was listed I received the call from Mayo to come to the hospital for the transplant. Wow! Post transplant they discovered I had Cholangiocarcinoma as well! OMG! Thank God it was discovered by pathology post transplant or I would not have received this special gift of life. I have already beat the odds by living 6yrs. Post diagnosis. I am coming up on my 2 yr. transplant anniversary 6-23-20. I am so blessed and grateful! I won’t let this COVID-19 take me out! I see familiar posts by some of my team! Thank you all so much! I am taking care to avoid any exposure!

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@jdlogan65, Welcome to Connect and Thank you for sharing your miracle here. You are to be commended for your proactive approach that brought you this far.
Have you seen the Transplant Discussion Group? Here is the link, is you go to it, you can scroll the list of discussion topics. I invite you (and all who see this) to join a discussion, and meet others who are sharing and asking questions about all things related to transplant.
https://connect.mayoclinic.org/group/transplants/

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 23, 2020
In reply to @rosemarya "@zon, Welcome to Connect. I am glad that you found us in this discussion dedicated to..." + (show)
@rosemarya

@zon, Welcome to Connect. I am glad that you found us in this discussion dedicated to living with COVID-19. It sounds like you have a fantastic family who has learned with you and supports you.
You mentioned running, do you encounter many other runners when you are out? I walk, and I am noticing fewer runners and walkers out and about. I wonder if some people are afraid to get out due to fear of coronavirus. Of course the weather plays a major role, too.

Jump to this post

@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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