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.

@danab

@joyces it's the Prednisone that causes the tremors at least with me. I'm on only Tacrolimus only now they took me down to 0 during the first 6 months on the prednisone. I'm actually heard that prednisone is usually one of the first to eliminate because of the tremors and lack of appetite which for me was a blessing. Food for me that first 6 months tasted awful.

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@danab I had terrible tremors. I couldn't hold a fork, spoon or pen. When I tried to read the book was all over the place. I was taken off prednisone within the first 4 months post transplant. My appetite was zero but that was also caused by my 4 ERCP's to insert a stent to clear a blocked bile duct. I got pancreatitis 3 times and could eat no solids for 7 weeks.

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@gaylea1

@danab I had terrible tremors. I couldn't hold a fork, spoon or pen. When I tried to read the book was all over the place. I was taken off prednisone within the first 4 months post transplant. My appetite was zero but that was also caused by my 4 ERCP's to insert a stent to clear a blocked bile duct. I got pancreatitis 3 times and could eat no solids for 7 weeks.

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@gaylea1Yes I definitely remember all you mentioned about holding things. Thank God for my Wife that took care of all the written work needed since I was also working on getting disability going since I could not do my former work. But today all is good except I still cant climb towers anymore(I was a communication Tech) but I am so glad that I received this awesome Gift.

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To all of my fellow transplant recipients, Lets get back to the topic of COVID-19 and Transplant Patients.

I want to share this clip from the Mayo Newsfeed related to COVID-109.
We are already leading the way forward because we have already learned to live without handshakes!

Is COVID-19 the end of the handshake as we know it?
https://youtu.be/ep_R3-5kmZ8
You can find the Mayo Newsfeed and keep up on the latest news and COVID-19 updates at: https://newsnetwork.mayoclinic.org/

What are you learning about living with an organ transplant in this COVID-19 era? How are you managing to adhere to your personal pre /post transplant protocol during the shelter-in-place restrictions?

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@rosemarya

To all of my fellow transplant recipients, Lets get back to the topic of COVID-19 and Transplant Patients.

I want to share this clip from the Mayo Newsfeed related to COVID-109.
We are already leading the way forward because we have already learned to live without handshakes!

Is COVID-19 the end of the handshake as we know it?
https://youtu.be/ep_R3-5kmZ8
You can find the Mayo Newsfeed and keep up on the latest news and COVID-19 updates at: https://newsnetwork.mayoclinic.org/

What are you learning about living with an organ transplant in this COVID-19 era? How are you managing to adhere to your personal pre /post transplant protocol during the shelter-in-place restrictions?

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@rosemarya It could well be the end of hand-shaking. I did shake hands with people prior to this, I was never told I should not, and it never occurred to me not to. In fact, even doctors tend to shake hands.

Other than not shaking hands anymore, which I really have not had occasion to anyway since we go nowhere, I am just following the protocols suggested, which do create quite a bit of work -- cleaning everything off that comes into the house, etc. We set mail aside for four days before opening it, my husband has four rotating shopping bags set up in our foyer. We have not been out to a store in weeks. It's nice to have Instacart and Whole Foods deliver, but it's difficult when you are ordering fresh foods like produce and meat. I like to choose for myself. I don't dare order avocados since I could end up with soft and mushy ones.
I did have to go two labs recently which I was not happy about but it was necessary and the facilities were doing everything in a way very conscious of not spreading any germs.
JK

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@rosemarya

@brenwhite, I want to add my welcome to you and I congratulate your son, you, and the transplant team for this transplant during these most difficult of times. I want to commend you for your positive attitude and trust in the care that your son is receiving at Mayo. Mayo is where I had my transplant 11 years ago (liver and kidney) and I assure you that your son is is the best possible care. I know that you will be overjoyed when he is able to safely come home. I am happy that you are adjusting to living like a transplant recipient, because that makes you one of us! Sending prayers as recovery continues.

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I had a liver transplant in 2018. Congratulations for your new life as part of the Mayo family. This may seem like a small tip but after years of filling my weekly drugs I found that it was difficult to open the gel packs on my Zortress (everolimus). I had to cut them out of the package sometimes damaging the pills. I asked the Mayo Specialty Pharmacy if there was another manufacturer that packaged them in regular bottles. They found exactly what I needed and changed to a different company that made everolimus in bottles. It made it so much easier for me and I don’t damage the time release pills. I was taking eight pills daily so it saves me so much time. Check with your doctor before making any changes. Best wishes and prayers for a speedy recovery!

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@contentandwell

@rosemarya It could well be the end of hand-shaking. I did shake hands with people prior to this, I was never told I should not, and it never occurred to me not to. In fact, even doctors tend to shake hands.

Other than not shaking hands anymore, which I really have not had occasion to anyway since we go nowhere, I am just following the protocols suggested, which do create quite a bit of work -- cleaning everything off that comes into the house, etc. We set mail aside for four days before opening it, my husband has four rotating shopping bags set up in our foyer. We have not been out to a store in weeks. It's nice to have Instacart and Whole Foods deliver, but it's difficult when you are ordering fresh foods like produce and meat. I like to choose for myself. I don't dare order avocados since I could end up with soft and mushy ones.
I did have to go two labs recently which I was not happy about but it was necessary and the facilities were doing everything in a way very conscious of not spreading any germs.
JK

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@contentandwell I just received my first food delivery from our local grocer and it was like celebrating X-mas in April!!! Like you, I've not been out in my car for shopping or errands in weeks. I set up the garage for a prepping "station" but was dismayed by the length of time spent in disposing of wrappings safely, wiping down items and washing produce, and preparing some for the freezer.

I only go to the mailbox 2-3 xs/week but have also been placing "kept" mail on the entry way floor for sunlight for several days before opening it. Doubt the sunlight is killing any germs but this designated area continues to help me use caution in what I do now.

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@fiesty76

@contentandwell I just received my first food delivery from our local grocer and it was like celebrating X-mas in April!!! Like you, I've not been out in my car for shopping or errands in weeks. I set up the garage for a prepping "station" but was dismayed by the length of time spent in disposing of wrappings safely, wiping down items and washing produce, and preparing some for the freezer.

I only go to the mailbox 2-3 xs/week but have also been placing "kept" mail on the entry way floor for sunlight for several days before opening it. Doubt the sunlight is killing any germs but this designated area continues to help me use caution in what I do now.

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@fiesty76, You are absolutely correct to be extra careful . As transplant patients, we have learned the necessity of germ avoidance due to being immunosuppressed to protect our organs. Hand cleaning, avoiding crowds during flu, and avoiding handshaking /germ transfer are our normal way of life.
Have you had to adjust to living without shaking hands? What are your thoughts about the information in Dr Poland's 33 second video thart I shared yesterday? (Is COVID-19 the end of the handshake as we know it?)

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@rosemarya

@fiesty76, You are absolutely correct to be extra careful . As transplant patients, we have learned the necessity of germ avoidance due to being immunosuppressed to protect our organs. Hand cleaning, avoiding crowds during flu, and avoiding handshaking /germ transfer are our normal way of life.
Have you had to adjust to living without shaking hands? What are your thoughts about the information in Dr Poland's 33 second video thart I shared yesterday? (Is COVID-19 the end of the handshake as we know it?)

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So sad that our world has become an even less personal, friendly place. I've worked in the sport fishing tackle industry most of my life. There are huge annual shows just for the industry every summer, plus all the consumer trade shows that many of us do, either in our part of the country or nationwide. Although there are a few major companies, even they're small compared to the "normal" world, and most tackle companies are Mom 'n Pop operations. Used to be that attending a show was just one hug after another as we saw people we didn't ordinarily see except once or very few times each year. The "Me Too" movement put an end to public hugging, took away the one bright spot of those shows, with their long hours and the same questions repeated over and over.

Now, we're learning to be distant from each other, no personal contact whatsoever, using electronic devices to avoid face-to-face meetings. We're learning to order things delivered, delivered without any personal contact. I don't think that this is going to lead to a kinder and gentler world for our future! While it's great that many stores have now put up plastic barriers to separate the store people from customers, they'll stay in place and become the norm, further depersonalizing our daily lives into the future. And, even though the barriers are better than masks for those of us who rely on lip reading, they further suppress what little useful sound we receive. We are most surely losing our humanity, becoming more and more dependent upon devices, far less aware of other people, their unique values, personalities, needs--and what we have gained from those relationships in the past.

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@joyces

So sad that our world has become an even less personal, friendly place. I've worked in the sport fishing tackle industry most of my life. There are huge annual shows just for the industry every summer, plus all the consumer trade shows that many of us do, either in our part of the country or nationwide. Although there are a few major companies, even they're small compared to the "normal" world, and most tackle companies are Mom 'n Pop operations. Used to be that attending a show was just one hug after another as we saw people we didn't ordinarily see except once or very few times each year. The "Me Too" movement put an end to public hugging, took away the one bright spot of those shows, with their long hours and the same questions repeated over and over.

Now, we're learning to be distant from each other, no personal contact whatsoever, using electronic devices to avoid face-to-face meetings. We're learning to order things delivered, delivered without any personal contact. I don't think that this is going to lead to a kinder and gentler world for our future! While it's great that many stores have now put up plastic barriers to separate the store people from customers, they'll stay in place and become the norm, further depersonalizing our daily lives into the future. And, even though the barriers are better than masks for those of us who rely on lip reading, they further suppress what little useful sound we receive. We are most surely losing our humanity, becoming more and more dependent upon devices, far less aware of other people, their unique values, personalities, needs--and what we have gained from those relationships in the past.

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@joyces, I'm afraid there is much truth in your post and it's sad. A lot of what you write here is being expressed by members in this discussion that @ginger2 started in the COVID-19 group:
- A New Kind of Grief in These Times https://connect.mayoclinic.org/discussion/a-new-kind-of-grief-in-these-times/

In this discussion, people are also finding new normal post Covid that might be positive
- New Habits from COVID-19 and the New Normal https://connect.mayoclinic.org/discussion/new-habits-ive-learned-from-covid-19/

I'd appreciate your adding your thoughts to one or the other discussion.

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@fiesty76

@contentandwell I just received my first food delivery from our local grocer and it was like celebrating X-mas in April!!! Like you, I've not been out in my car for shopping or errands in weeks. I set up the garage for a prepping "station" but was dismayed by the length of time spent in disposing of wrappings safely, wiping down items and washing produce, and preparing some for the freezer.

I only go to the mailbox 2-3 xs/week but have also been placing "kept" mail on the entry way floor for sunlight for several days before opening it. Doubt the sunlight is killing any germs but this designated area continues to help me use caution in what I do now.

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@fiesty76.. Yes! Food delivery is like opening presents on Christmas day! Surprise! I got my 3 tubs of tofu from Whole Foods yesterday. It made my day! I need to organize my freezer today. On pre virus days I would do a freezer cleanse periodically, eat everything in the freezer before restocking. But now my daughter said I should leave them alone and eat what I can get fresh first. I don't eat much animal protein but now even less. Maybe that's why now I want an In and Out so bad! My son broke down and ordered a pizza the other night. He said he put the pizza in a very hot oven another 10 minutes before eating. Since everything is paperless these days, the only mail I get now is junk mail so I don't worry about it. I have a bag outside my house that I put the junk mail in so they don't even come inside my house. I noticed our mailman wears gloves and a face mask. We used to chit chat a little, but now we wave instead.

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