I'm just over 9 months kidney transplant from a living donor. I've felt great but I do worry, since it is cold and flu season, about getting sick. Probably my biggest worry at this point. I try to wear masks when I am out and take all precautions. I just wondered though if I should get sick what are your recommendations for the different viruses that are "out there" during this season? Have any of you experienced any of these viruses? Do doctors just treat the symptoms? Are there medications that they used? I heard that I can not take Paxlovid should I get Covid. So I am just curious what has been treatments used and how serious it got. I guess I just worry and hoping that I don't' catch anything. I appreciate your thoughts and recommendations. Thanks and have a great weekend!
If you get sick...cold, flu, Covid...wha... - Kidney Transplant
If you get sick...cold, flu, Covid...what did you do?
Contact your transplant center right away, especially if you get Covid. Get your vaccines: flu, Covid, and RSV. I had Covid last October. It wasn't severe, but they did tell me to go in for Remdesivir. And yes, absolutely no Paxlovid. Keep taking precautions, but don't stress too much. Soon you'll be at the one year mark. Congratulations!
Thanks - I've gotten all of my vaccines....everything is up-to-date. I guess I just worry because the rate of viruses keep going up and up. Trying to do "normal" things but always have a little fear in the back of my mind. Masks do make me feel more comfortable but I worry about others that don't take things seriously. Had a lady in our church that coughed her head off and I thought, how inconsiderate...... I had an N95 mask on and thankfully no issues. I appreciate your positive comments - have a great weekend.
Talk with your transplant center and have a clear plan as to what you would do if you were infected. For Covid, if Paxlovid is contraindicated, the antiviral usually recommended is out-patient Remdesivir (it's IV and needs to be taken for three successive days). Find out where you would go for that. Although you hope to never need to implement your plan, knowing in advance will not only be reassuring to you, but would allow you to begin treatment as soon as possible.
First, CONGRATS on your transplant! I am so glad you are doing so well and I hope that you continue to do so. The precautions you are already taking will help tremendously.
I am just over 4.5 years out from transplant, also from a living donor, and significantly younger than you. I have unfortunately had my fair share of run-ins with the ER as a patient. I am also an EMT, so as someone who sees things from both the medical professional and patient sides of things, my go-to is usually the ER, because if it does turn out to be serious I want to know I am already in a place where I can be hospitalized if necessary. Given your age, I might recommend that as well depending on the seriousness of your symptoms.
However, dont underestimate the power of a great primary care doc either! They can do wonders to rule things out before you end up needing an ER. For example, my doctor recently found pneumonia from a CT scan and put me on antibiotics, which got rid of the intense chest pain I had from it.
Good luck!
I have a doctor friend that told me that the ENT’s & dentists during Covid all used a Qtip with hydrogen peroxide up the nose after crowds. I asked my doctor she said it was fine. I have done it the last 1.5 years and it has worked for me. I just got back from a cruise with 900 people for 8 days. I did not catch anything but both my kids caught Covid.
I am 2 .2 years post transplant and very blessed!!🙏🏻🥰
Ask your doctor but it works for me and I am sticking to it!
thanks - that is really interesting. I may have to try that. I am going to mention it to my ENT and get his thoughts as well.
My hubby has had a transplant for 2+ years. We keep our immunizations up-to-date. However, hubby managed to catch a cold and that was treated with over-the-counter meds. It ran its usual course - similar to pre-transplant days. Our transplant center give us a notebook when he was discharged back then. That notebook included info on "preapproved" over-the-counter meds that transplant patients can use to treat common illnesses; maybe your center did that too. My hubby merely followed those instructions on how to treat colds. Some transplant centers also provide their lists on their websites. My hubby has never had Covid. However, I managed to catch Covid, probably from an airport. I took Paxlovid to shorten the illness and immediately made myself scarce, claiming an unused bedroom on another floor in our house. (Transplanted folks should never take Paxlovid for any reason.) I wore a mask around the clock while I was sick and washed my hands constantly. Hubby never caught it. So, please don't worry too much. Things can be done to minimize probabilities. And it's highly likely, should you contract something, you will come out of it just fine if you're aware and hop on it quickly.
Ok, why? Why not Paxlovid? I had Covid and my doctor told me to take it.
Oh! I think you're right! My hubby was told that, under no circumstances, should he take Paxlovid since he was on immunosuppressants, one of which is tacrolimus - but that was well over a year ago. In hindsight, I think that my blanket statement probably doesn't apply anymore. More research has been done since then, some may not be on tacrolimus, or tacrolimus can be stopped for time, etc. So protocols have changed. This is report addresses the matter: medpagetoday.com/transplant...
That would be it. I don’t take Tacrolimus.
What do you take instead of Tacrolimus?
I take prednisone 5mg. , Celcept 750mg. twice a day and infusion of Belatacept once a month.
thanks!
Everyone’s case is slightly different. Paxlovid will make your tacro and cyclosporine levels completely toxic. I am on cyclosprorine I couldn’t tolerate tacro. Maybe Lavendar Rabbit was on sirolimus. My doctors have told me, Remdesivir is all we can take and it must be within 7 days of testing positive or it may not helpl
Thanks everyone for your help and advice. This site has been super positive and helpful !
Your body guest thing is stop worrying, it does help just be safe where a mask if you see someone cough and use common sense. You immune suppressed but still the same person you were 9 months ago. You’ll live through each one just be cautious and you’ll be fine. Send all that worry to God and be so thankful for live. God bless you,
Hullo and congrats on your transplant. I am 6 months out and had a cold which was, weirdly, milder than I would normally get them. Last 3 days. Then a run in with killer migraines which i was put on propranalol for and worked like magic. Went to ER 3X for that then my gp diagnosed migraine, which everyone else missed. Im up to date on all vaccines but am still on valcyte and mepron so we shall see what happens after that. I was nervous about catching things but doesnt seem to be a problem so far. Fingers crossed. X
I got Covid and I didn't need to go in the hospital. I juat treated the symptoms. For me the biggest thing I have to watch is a fever because I have Addison disease and if I get a fever I will need to go to the ER. As scary as all these different illnesses are I would recommend you taking all the precautions you can but don't hyper focus on them. Also, to help you have piece of mind I would speak with your center and ask about what to do for a cold and covid if you would get them. I do know that if you get sick and are throwing up go to the ER no matter what. I hope this helps.
I actually tested positive for Covid on Friday night. It has just been like a cold. Started with a sore throat, and a runny nose, and a cough. The transplant center told me to just treat the symptoms, but if I had trouble breathing, which I don’t, then I need to go to the hospital. Going to do a telehealth visit with my primary care doctor in about an hour. I’m very tired too. Hopefully that is it in a few days I’ll feel better. Thanks for everyone’s recommendations and support
Sounds like your doing everything right and just listen to your body it will let you know what you need to do! Hugs and prayers for a speedy recovery.
Thanks so much. Truthfully - Day 3 and I feel just fine other than a little stuffy nose. I've had all the vaccines and I think that has helped a lot. I know another person who was NOT vaccinated and she spent 6 mon. in either the hospital or a nursing home and still isn't right now. She has lots of problems. She was anti vaccine person and now I bet she wished she had gotten it. I am so glad I did for sure with a transplant. Again, appreciate your support.
Immediately after my transplant I asked my team when I could stop wearing a mask. Their answer: Never. So I always wear a mask when I go out in public, even if I'm just taking a walk.
Despite the mask I contracted Covid six months after my transplant. I didn't even realize I was ill, but a home health aide came and found me unable to stay awake for more than a few minutes at a time. She called an ambulance and they took me to hospital where I was diagnosed, given a prescription, and sent home.
Thankfully, aside from being ridiculously sleepy, I never had any symptoms. No chest pains, trouble breathing, no fever, no body aches. Lucky me!
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