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.

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@naturegirl5

I am not a transplant recipient, but one of our closest friends is on the liver transplant list at Mayo in Minnesota. He has cholangiocarcinoma (malignant tumor in the liver) and has been through so much over the past year. The tumor is stable, no change, and no mets. He will stay in Rochester as he awaits the transplant. I am writing this because I pray for him and his wife every day. He spent his professional life as a neonatologist and I think of all the babies he saved and families he worked with over the years. I know he is in self-isolation at home right now until he flies to Minnesota again. Every one of you or your loved ones, as transplant recipients, must be more vigilant. No one of you is overdoing it. Not at all. It's a blessing that you can all provide validation to one another here on Mayo Connect.

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I was diagnosed with cholangiocarcinoma (rare bile duct cancer) In March of 2017 and went thru a long 18 month wait for a deceased donor. I would be glad to share my journey with anyone. Be Safe, be clean, be strong...

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@gingerw

Just last night my husband and I were talking. He is a kidney recipient, and currently lives 800 miles away, working to retirement. His flippant remark that he will send me to do the shopping etc when he gets here hit me wrong. While he is on immunosuppressants, he failed to understand that my autoimmune conditions also place me in an at-risk group, along with age.
Ginger

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@gingerw People have suggested that my husband could go to the store but I think that his added age - he is 12 years older than I am - sort of equalizes him with me being on immunosuppressants, plus he could of course bring home germs. I would feel fine going out in the very early hours and grabbing a few quick errands, avoiding being within 6' of people, and then of course thoroughly washing my hands when I got home, but my family is all over me so I don't think I will. Although I think the risk is minuscule, if I did catch this virus my family would all be too furious at me to risk it.
JK

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@lisamb

I was diagnosed with cholangiocarcinoma (rare bile duct cancer) In March of 2017 and went thru a long 18 month wait for a deceased donor. I would be glad to share my journey with anyone. Be Safe, be clean, be strong...

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@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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@dfenderso

Any transplant patients here who are also healthcare providers? As of now, I have 1 week off, when who knows. I'm working in a county where we have 8+ confirmed cases and up to 100 others under consideration. I work as a nurse practitioner in both a busy hospital and in a busy outpatient clinic. I am on a Cellcept/sirolimus/prednisone regimen. I know I am part of a high risk population, and likelihood of more severe symptoms in the immunocompromised is high. My employer told me to wear a mask and stay out of the hospital. A mask alone is not so reassuring to me, nor 100% evidence-based given so many unknowns. Our clinic currently has no policy in place for adequate screening of patients, and we have 100+ patient coming and going from our clinic daily. I feel like I am being pulled in two directions between self preservation and job preservation. As health care providers, we are trained to more or less "do and die." We are made to feel guilty if we make a selfish decision. But frankly, I'm currently scared to go to work and feel like I need to be selfish right now. Any input, thoughts, or words of reassurance?

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Defenderoso, be selfish. There is not enough information on the covid-19 virus to rely on a mask. I highly recommend that you follow your gut and the instructions of the CDC and your transplant team. Covid-19 causes multiple organ failure if the infection is severe. I have no intention of letting it claim my son’s kidney from my belly! Be selfish and do so guiltlessly. You will be a healthcare provider after the infection has passed and will be much needed since nurses and doctors are falling ill from exposure to the virus.

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@joyces

One very important thing to strengthen our immune systems is to avoid ALL processed foods. I cook from scratch for the most part, don't buy anything that has a long list of ingredients, many of them various chemicals. I've done this forever. We also almost never eat out. My daughter never had colds/flu...until she moved out at 24, started eating packaged foods, and had so many respiratory infections that her insurance dumped her. All that was 26 years ago.
My husband traveled, doing nine trade shows in the outdoor industry every winter, some of them back-to-back. Days of driving, followed by other exhibitors and the public all hacking, sneezing, coughing. He's a brittle diabetic and, during those years, had very low kidney function. I pre-cooked meals for him to heat up in the microwave in his room; he made sandwiches and took fresh fruit for lunches. In spite of his health issues, he never, ever had even a sniffle all those years! He quit doing shows for the company when he went on dialysis, subsequently got a kidney transplant six years ago and, of course, is on immunosuppresents. He's never had a cold or flu since the transplant. We quit doing anything other than simple hand washing 5½ years ago.
Avoiding the additives and chemicals in processed foods is a huge step towards staying safe. Cooking many things from scratch is not terribly difficult. I do use a few canned items, like tomato paste (not sauce, which is full of salt) that have nothing other than the food itself. Naturally, I avoid any canned item that has salt. Due to his diabetes and both of our kidney issues, I avoid using salt, sugar, and fat in everything I prepare. Making pasta sauce from canned tomato paste only requires adding herbs and enough water to yield the right consistency, with a pinch of sugar to bring out the natural tomato flavor. How much more difficult is that than heating bottled sauce that's full of chems and salt, perhaps sugar?

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Joyces @joyces It sounds like you are a wonderful cook and caregiver for your post transplant husband. One thing I questioned early on from your post is when you said “one very important thing to strengthen our immune systems is to .....”. The thing about being post transplant and on immune suppression medication is that we need our immune systems weakened (NOT strengthened) on purpose so that we don’t reject our transplants. That is mainly what puts us at a greater risk of catching and then not being able to fight off bad stuff. We have to be vigilant in finding other ways to avoid the bad stuff and protect ourselves.

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@cehunt57

Joyces @joyces It sounds like you are a wonderful cook and caregiver for your post transplant husband. One thing I questioned early on from your post is when you said “one very important thing to strengthen our immune systems is to .....”. The thing about being post transplant and on immune suppression medication is that we need our immune systems weakened (NOT strengthened) on purpose so that we don’t reject our transplants. That is mainly what puts us at a greater risk of catching and then not being able to fight off bad stuff. We have to be vigilant in finding other ways to avoid the bad stuff and protect ourselves.

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@cehunt57
Well said!!! As transplant patients we have a responsibility to take our medications keeping our immune systems at the appropriately LOW levels in order to prevent rejection. I shudder when I hear transplant recipients taking high amounts of Vitamin C, herbal medicines or other non-prescribed remedies to "stay healthy", when in fact boosting the immune system in transplant patients is proven deadly. @joyces healthy eating is certainly a good idea as is maintaining optimal BMI and daily exercise but self prescribing other immune boosting supplements are ill advised without doctors orders.

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@jolinda

@cehunt57
Well said!!! As transplant patients we have a responsibility to take our medications keeping our immune systems at the appropriately LOW levels in order to prevent rejection. I shudder when I hear transplant recipients taking high amounts of Vitamin C, herbal medicines or other non-prescribed remedies to "stay healthy", when in fact boosting the immune system in transplant patients is proven deadly. @joyces healthy eating is certainly a good idea as is maintaining optimal BMI and daily exercise but self prescribing other immune boosting supplements are ill advised without doctors orders.

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Thank you for your post. I am so afraid right now to take anything. Especially in the middle of this Coronavirus pandemic. I think I May be a bit depressed.

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@cehunt57

Joyces @joyces It sounds like you are a wonderful cook and caregiver for your post transplant husband. One thing I questioned early on from your post is when you said “one very important thing to strengthen our immune systems is to .....”. The thing about being post transplant and on immune suppression medication is that we need our immune systems weakened (NOT strengthened) on purpose so that we don’t reject our transplants. That is mainly what puts us at a greater risk of catching and then not being able to fight off bad stuff. We have to be vigilant in finding other ways to avoid the bad stuff and protect ourselves.

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!cehunt57: There's something else at work when you eat real food instead of the crap that comes in pkgs. I think it's a little like adding flax meal to my dog's kibble: it makes his skin so healthy that fleas go elsewhere. Although we've done the food from scratch thing for decades, which does make us much healthier and resistant to diseases that others catch (immunity?), his kidney doc reduced the amount of immunosuppresant drugs during first three years post transplant. All of his quarterly tests are A-OK, indicating that he's in no immediate danger of rejecting the kidney.
Eating properly-prepared (at home) foods low in fat, salt, and sugar is part of an overall healthy lifestyle: adequate rest, exercise, avoiding stress, etc. We know that all of those things can make you feel far better every day, and that does improve your ability to avoid infection. It may be why he, insulin-dependent for decades, never gets infections, not even when our cat forgets to keep his slicers in! Docs have always been amazed at how nicely/quickly he heals following surgeries.
Perhaps this is a slightly different kind of immunity. I don't know, but I do know that it works, so we'll continue.

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@cehunt57

Joyces @joyces It sounds like you are a wonderful cook and caregiver for your post transplant husband. One thing I questioned early on from your post is when you said “one very important thing to strengthen our immune systems is to .....”. The thing about being post transplant and on immune suppression medication is that we need our immune systems weakened (NOT strengthened) on purpose so that we don’t reject our transplants. That is mainly what puts us at a greater risk of catching and then not being able to fight off bad stuff. We have to be vigilant in finding other ways to avoid the bad stuff and protect ourselves.

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@cehunt57 Be mindful of our diet, our lifestyle, and our social interactions is so critical is this time whether it is clouded by the coronavirus or not. My husband is a transplant recipient, I am also in an at-risk category due to age and other medical issues that I deal with. I agree with eating as healthy as possible and I have an overactive immune system which is the cause of so many of my issues. We are each being very careful about how we handle each day.

If you are a sewer or you know someone who is, here is an article that you might find helpful. While there will be arguments against wearing these homemade masks, I feel that they are better than nothing and they can be laundered which is a big plus in a time of shortage. I will be making some for both of us here!
https://www.courierpress.com/story/news/2020/03/18/coronavirus-deaconess-ask-public-provide-medical-face-masks/2865273001/

Ginger

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@dshaver

Thank you for your post. I am so afraid right now to take anything. Especially in the middle of this Coronavirus pandemic. I think I May be a bit depressed.

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Try being functionally deaf, unable to use phones or hear news on TV or radio during this pandemic when you live in a rural area with no real local news! Now, that IS depressing!

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