How I survived COVID-19 with a liver transplant began by eating a Liver Loving Diet. You knew that was coming, but there’s more. I also give a lot of credit to singing. There is a method to my madness, so read on. After spending the whole year safeguarded from the outside world, I ended up with getting exposed at home during the first week of December. My oldest granddaughter came to spend a few nights with us, and we knew that her friend group got sick around Thanksgiving. She had gotten tested, and finished her quarantine time, so we felt safe. My husband and I were shocked as we felt the virus coming on. Joe is in the best health of his life. We both work out a lot and feel very young for our age. We were still so stinking sick.
Essential Things I ALWAYS Do Anyway
Talk to my transplant team about any changes
Get my labs done
Eat a low sugar and sodium + healthy protein diet
Teach Tai Chi and Yoga weekly and also do cardio exercise
Laughter, Prayer, and Meditation are the best medicine, and I use all 3 generously.
Liver Disease Advocacy and the AASLD
Studying liver disease and COVID-19 was literally a full time job for me over the last year. Heck, I am the patient representative for a group of world renowned physicians, clinicians, and surgeons who have met faithfully and discussed every aspect of COVID-19 and the liver. You can access the patient facing documents here at the American Association for the Study of Liver Disease (AASLD) website and foundation. You can also learn from the compiled registries and data in 2021.
It’s beyond insane that in spite of everything I’ve learned, I still got it. But just like with Hepatitis, liver cancer, and a transplant – whatever I learn, will eventually get shared. I hope that these how-to’s will help you, or at least reduce your fears. They will apply to immunosuppression, and possibly for other types of liver disease as well. I’ll write more about the timeline later. Right now, this is the first day I’ve felt up to publishing a blog, since the fatigue comes and goes.
How I Survived COVID-19 with a Liver Transplant
Don’t wait for a positive test. I lived for 11 days knowing I had COVID-19, but my Rapid Test was negative. Trust YOURSELF and call your team.
Sleep often and anywhere. Hubby and I both felt like 10-12 hours a night was a minimum. We work from home, and dozed instead of having lunch.
My COVID-19 was more severe due to immune suppression. I was wiped out and had every symptom.
Drink a gallon of water a day. I started the day with a cup of coffee and then drank water.
I dropped Cell Cept for 2 weeks. While I was thinking my test was negative, I actually slept through 2 doses of Prograf. I set an extra alarm after that. I can’t wait to get my labs done to see how this has affected my liver enzymes and creatnine, and all of that.
Use a protein shake to help your body heal. We needed 60 + grams per day.
We were NOT hungry, felt nauseated and food tasted awful. The protein and vitamins were life saving.
A general multi-vitamin, PB 8 Probiotic, zinc, extra C, Vitamin D3, melatonin, and aspirin alternated with tylenol. (No more than 80 micrograms aspirin OR 1,500 milligrams of tylenol per day.)
The tylenol knocked the edge off of our fever and body aches. Did I mention headache from hell for 10 days? Like an icepick and a chisel. Baby aspirin didn’t help with pain, but was used alternately with melatonin to reduce the risk of blood clotting. Thank you Dr. Donnica.
We used Benadryl (mine is children’s liquid). I also used Robitussin. Joe had the cough, but mine quickly became thick and the expectorant helped. I’ve had pneumonia before and can tell you this felt like “walking pneumonia”. My chest was on fire and I had severe shortness of breath. I was panting for air during the worst of it.
Getting Physical
Standing Tai Chi and floor yoga poses helped reduce stiffness and back aches. Gosh it hurt, but was much needed. Lots of arm swinging while sitting in a chair or standing helped also. Watch for dizziness and do this sitting if neccessary.
Singing. Serious, out loud while strumming the ukulele. We also played every song we ever knew and sang along. That’s what kept my lungs open. I even did the entire original score of Handel’s Messiah (sometimes singing Alto, and other times Tenor). Pulmonary rehab will be part of a fb live soon. Ya gotta do it.
I took deep breaths, on purpose, and with much pain to keep my chest open. There is no drama in this statement: Walking was easier post transplant than it was with COVID-19.
Summary of how I survived COVID-19 with a liver transplant
I chatted with primary care, went to urgent care, and also talked to my team 2xs. All of the above were part of the “treat from home” protocol. Oklahoman’s have been spreading Covid at a higher rate per capita than any other state. My friend with a kidney transplant had to go to a neighboring state for health care. Please pray as they remove her from the ventilator this weekend. They are also burying her brother who passed from COVID. He donated his kidney to her over 30 years ago and is a Viet Nam Vet.
Joe and I feel that we had a moderate to severe case. He is never sick, and didn’t have anything to compare it to, but he was down for the count. We literally saved each other through this, and were so happy to finally be hungry. Lime green jello was all that sounded good Did anybody else go through that? I feel blessed to have gotten through this and want to offer hope to anyone who is afraid.
We Have a LOT to Lose and COVID-19 is a very sobering and deadly virus. Please remember that everyone is different. We are at different stages of disease. Follow your team’s advice and I’m sending love and hugs to all who are afraid of getting, all who are recovering, and all who lost a loved one.
I think a timeline would be the next good blog. I’m just so dang tired and it’s been almost a month since the onset. Let me know if you have questions. I remember how scared I was. xo xo Karen
14 thoughts on “How I Survived COVID-19 with a Liver Transplant”
Karen, I am so thankful for this blog post! My daughter was over Christmas and she had tested negative on Thursday and she got her results on Friday so she came over for dinner, she later left and later that night she wasn’t feeling well…She was sick and ran a fever all weekend and on Monday she was tested again and it was positive. I am now quarantined and have been taking my zinc, D3 (5000 units) Melatonin, and eating oranges like crazy. So far it has been a week and no sign of illness…how long were you exposed until you started feeling sick? I am worried. I miss talking to you…best wishes to get well. Love you!
Emma,
Hey sweetie! It sounds like you’re doing all the right things. Just like me. Except my granddaughter never tested positive. So she was here on Thanksgiving Day (Nove 26th) and heard from friends that they were sick. So we just let that one go, since she and I had ben up dancing and singing. It was a fun day and we all felt great. She tested negative.
THEN her friend’s boss got it, and another friend. That was the Dec 3-6th and she had another negative test and felt fine. She works and has literally had 3 negative tests in the past 2 months.
So on Sunday Dec 6th Joe got the headache. Then by Wednesday I started coughing. Nothing major. I woke up Friday Dec 11th (5 days after seeing my grand) I could barely get out of bed. We went straight to urgent care. The rapid response was negative, so I kept having meetings with kids and hurt all over. Hubby and I were moving about 1/10th speed. By the next weekend, it had moved to my lungs and we went back to ER. Long story. Sorry.
I really think we may have gotten on Thanksgiving 2 weeks earlier and that Jill just had the rapid test and it was negative? Plus she was asymptomatic. She’s never had a sick day, but she was the only factor that changed in our routine. In her defense, she told me she would wear a mask and Joe and I said no, because WE TRUSTED THE TEST.
Please keep me posted. Again, you’re doing all the right things. I’m still pretty much a zombie. Keeping my chest clear with meds. Watching Cleveland football today and thinking of our great times together!
Love you sister,
Karen
God bless you I’m awaiting my covid results. So far day two not so bad. Fever headache no smell shakes when Tylenol wears off. I don’t have liver diease but my husband had cirosis.. I have been keeping separate bedrooms and bathroom. Yes I’m scared. God bless you!!
Amelia,
My first few days there were no real symptoms either. It was like my shoulders hurt (like a crick in my neck) and the low grade fever. I’m glad you’re taking care to be separate. I’ve got a friend with a kidney transplant who separated her daughter from everyone in the house. Nobody else got sick.
It’s totally possible not to pass it. Keep me posted on your results. Did they go DEEP in your nose? Was it a cotton swab or the other hard metal thing? I’m just curious and truly think there is not enough accurate information. We’re left to learn from each other.
Thanks for writing. I hope the liver disease documents help you. Sending hugs and love to your whole household. xoxo
Hugs, Karen
So glad you both recovered! I was very curious to see how a (fellow) liver transplant patient fared, in recovering from COVID-19. It sounds like you had a Moderate case (not to try to downplay your suffering), compared to those in hospital, on Ventilators and dying by the thousands daily. I too am worried about exposure, as the virus has already begun mutating and people are coming down with it, who have no idea how they contracted it. Be well. Rest, and avoid a Rebound of the virus. Take no chances.
Richard,
It’s always good to hear from you here on the site. Thanks for stopping by. I’m think about all of this and trying to understand. I’m still working on a paper with the AASLD. The information is SO had to track.
You’re right about all those who pass and living on ventilators. It’s strange how some had heart disease or inflammation problems, or diabetes – which is definitely a threat. Other’s seem to have no health problems and weaken so quickly. I was scared. I think the heart problems scared me the most. My heart raced upward toward 120 and even to 127 while I was laying on the couch sleeping. I felt it going out of control. I just prayed and drank water and tried to get my lungs cleared.
I told my team that I did NOT want steroids. I only have 1 kidney, and felt that if I could stay away from steroids, it might be the safer option. I went to a local urgent care and they ran a chest x-ray. I went home and stayed home for a couple of weeks.
I’m watching for the rebound and THANK YOU for the reminder. We can’t take any risks with this. I had Hep C and know what a virus feels like. This is the weakest I’ve been and I’ve gone to work with a hemoglobin on 5. You’ve been sick, so you know what I mean. This virus is a wild card. I don’t want to over sensationalize, but you are right – Take no chances my friend.
Sending Love,
Karen
Dear Karen, You are so inspiring, humble & so honest. Thank God I found you & the liver loving diet book. So happy you got through Covid. I know you got a lot of living to do. Thanks for you generous kind heart. I sing that song during the day too. XXOOO Deb M
Sweet Deb,
I truly appreciate that coming from you. We’ve been through a lot together and I worry about all my friends. In a way, it feels kind of safe. At least I know what a moderate case feels like. For some reason, my body didn’t go wild with inflammation. I FELT the virus. I could barely keep my eyes open. Joe and I both said that it hurt to hold our head up. We watched each other like hawks, constantly taking tylenol. I’m truly not ready to die and would NEVER risk losing the gift of organ donation. We really thought we were safe.
I’m looking at it different now. What song do you sing during the day? I can’t remember what I wrote. haha. A joyful heart is healing for sure. Sending you love and hugs Deb. XOXOXO Karen
I am so glad that you are healing up. I am also so glad that you are sharing your experience. On a cirrhosis support group on Facebook, someone mentioned they tested positive and they were scared. Of course, the post turned into a debate on the validity and severity of Covid19 rather than an informative, constructive, or compassionate discussion. I am going to try to find the original poster and direct them towards this blog post.
Thanks for all that you do
Stephen,
Great to hear from you. Feel free to share it in any fb sites that you want. I’ll try to share it today. I put it in the transplant site. If the admin doesn’t want it, or people become decisive, they will take it down.
Most people are eager to hear personal stories of survival. I feel like the worst is over for me and am glad to have good news for some liver disease patients. I really feel that water to prevent dehydration and keeping lungs clear is KEY. Of course everyone is facing their own story of liver disease, and I certainly wish everyone the best.
Take care and stay safe!!
xo Karen
So glad that you are both on the mend and so grateful for all your leadership in sharing your experience.
Donna,
Thanks so much for well wishes – and caramel corn. It was the first thing I could actually taste! It’s really a rough go, and I’m heading for my first labs today. We’ll see what that all looks like.
This is scary and I hope we can get past this as soon as possible. You and I know what sick feels like, and I’m still very weak. Of course I’m also fasting and that doesn’t help!
Much love to you and the Global Liver Family,
xo Karen
Watching and praying for you. I’m so glad you’re on the mend. I have had a theory since this whole disease was discovered to have the huge immune response in the lungs. That was what ended up hospitalizing and killing so many.
Since we have a suppressed immunity perhaps we are a bit protected from that. I discussed it with my team right after transplant 6 months ago and she said it was interesting and the team is looking into it.
I miss our conversations and I’m glad to not be working so much and have a little free time now again.
Keep doing all you do, we all need your great encouraging spirit and smiling face every day!!
Praying that is The case and we can all be comforted if it turns out to be true.
Vickie – You’re so right and it has been discussed widely in the medical community. It’s one of the reasons Joe and I went ahead and kept our plan to stay out in a cabin in the middle of nowhere with hundreds of acres. We had plenty of fresh air and could walk around in nature. I did stop taking mycophenalate or cell cept. I got my labs back and they’re pretty good. Liver enzymes up to 33 and we’ll watch that.
It’s a relaxed body and mind for me right now. This “felt” like a brush with something super serious. It hit me hard. Hubby too. We’re totally changed by this experience.
I saw all of your fun with the job. You know, I’m glad you’re taking some time for yourself. Joe and I had 5 years post transplant to just BE. I’m enjoying teaching now. The home office is fun for us. I”m going to go get online and read with some kiddos now.
Everytime I see you post, I remember those late night talks last spring. You transplanted at one of the most frightening times in history. You’re a walking miracle girl.
Love you so. I’m doing Tai Chi at 4 today in the Karen R Hoyt fb room. It’s gonna be a relaxing stretch. haha.
xo Karen
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