I am finding my anxiety about Covid is impacting the quality of my life. I have periods of generalized anxiety where EVERYTHING scares me: from Global Warming to the drought in the western states to my husband dying and leaving me alone. After much thought, I think it all stems from the onset of Covid, right about the time I had my kidney transplant. I never experienced anxiety before. I've done everything possible to prevent exposure and/or infection: masks, vaccinations, boosters and 2 doses of Evusheld, but my anxiety is getting worse and I avoid leaving the house! My husband and I are both retired so we don’t need to go anywhere, but it’s starting to get to me.
Has anyone had Covid while immuno-suppressed? How bad was it? I had a hard time post-transplant and I think I have PTSD from the whole experience. Being sick and hospitalized scares me to death, but I think I’m possibly over-fearful? I would welcome any advice, especially from those that have actually had Covid.
Thank you all.
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Djangosmom
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good morning. I am 49 year old female and got Covid 4 months post transplant. I received original vaccination and two boosters prior. My symptoms were very minor. A little sneezing and cough for a couple of days with mild headaches. But everyone is different as you know. I understand you concern about being around others. So continue to protect yourself. But it is a good idea to get some fresh air and go outside for your mental health. This can be done without being around people.
yes. Contracted COVID twice in 2022 - 4 years post transplant. Contacted my transplant center and received monoclonal antibodies. Completely vaccinated. Symptoms mild. I am anxious about it also, you are not alone. Best wishes.
Are you reading and watching News more now that you are retired ?...News is depressing and alot if it is exaggerated to play to their audience...I have to be careful ...try to hit the highlights because I want to know what is going on in the World....but then put on a movie or sitcom
Hi friend! Anxiety is so tough, and definitely valid after going through something so life changing as a transplant.
Everyone reacts to things differently, and COVID is no exception. I had COVID in 2020, a couple months after celebrating a year post-transplant. It was scary, but I ended up doing just fine. I went to the hospital just to make sure things were still looking good but otherwise I was able to ride it out at home. Since this was in 2020 it was also prior to when the vaccine became available, & I happened to be working in healthcare at the time. However, I am also young (currently 30 years old) so that probably helped.
If you're still wearing masks in public, washing your hands properly and regularly, and your vaccines are up to date I imagine you'll be okay. The risk of exposure is much lower because the rise in cases recently has been so much smaller than previous waves of COVID. Of course it's also not a bad practice to consult your nephrologist!
hello mam, I had it in July 2022 but now the covid infection is not worst as I already got my two vaccines, not the booster (as my doc said no to it) still covid is just like any other viral infection me least. But I think just always take precautions. nothing else as the covid situation now is less effective on the body.
Hi. I am 56. Had a kidney transplant on 4/20/20. Had COVID in July 22. Got monoclonal antibodies. No issues. Was a cold. The only issue was some fatigue for 2 weeks. I am a nurse and work full time in the hospital. I wear a mask at work but mostly don't wear a mask going to the stores. I do wear one on airplanes. I like to travel and just went to NYC for Christmas. Did not get sick at all. I am sorry you have such anxiety related to it. I am sure my needing to work full time helped me because I had to leave the house. I hope you feel better about going out soon!
Thanks for your reply (I'm not the original poster). I'm pre-transplant and plan to continue working in primary care as I start dialysis and it's nice to see that I'm not the only one. Through this pandemic I have observed a very wide range of responses to risk of infection, with some of my (healthy) friends still being in social lockdown and some of my least healthy friends still living a busy social and occupational life with some precautions. I think the amount that someone restricts their activities has more to do with their willingness to tolerate risk than anything else.
This is almost the exact same experience for me as well! I had my transplant in Jan 2022. I got Covid July 2022 and within 6 hours of testing positive, had gotten antibodies and I felt almost completely fine after. But yeah I had awful fatigue for about a month after. Wasn’t expecting that
I have had Covid twice and both times ad I received the antibodies via infusion both times. I was fine. Life on a transplant is worrying and the medication can effect our mental well being too. I think talking to a mental health professional would help. I think that we can focus so much on our transplants and our body without caring for our mental well being too. Anxiety will surface in many disguises and it’s hard to see it for what ot is… negative repetitive thoughts taking over from our real self.
Having a transplant , taking these strong medications is a huge huge deal. It’s traumatic but at the same time it saves our lives …in between these two places there is a calm space but not unsurprisingly can take a while to find it.Keep going .
First of all, what a darling pic you have - small person in your life I assume. I had a transplant in 2009. I’m careful in regard to Covid, but I have to admit I’ve been in groups of folks, for example at a baseball game with no mask. Recently I was at my dermatologists office, masks are no longer required there. Confusing. Got transplant labs today, everyone at that clinic wears a mask.
I too find myself worrying about things out of my control. My husband’s health, the stock market, school shootings - we have a 6 year old grandchild. The longevity of my transplanted kidney. Take the best care of the gift my friend Molly gave me as I possibly can.
Etc etc etc
When I find myself thinking anxiously about the future (easily done) I try to remember what my therapist says - “how is this serving you”
He is an excellent therapist - I’ve seen him (virtually since Covid) for years. Recommend him to at least 15 people. He is my age, 66 & I told him that I would definitely not be OK with him retiring.
A new kidney is such a gift. SO many people waiting for one - many people dying as they wait.
I pray you can find some peace & enjoy yours.
You might want to consider talking with someone who is trained to help with anxiety.
There must be a social worker at your transplant clinic who knows a good therapist. If you find one & don’t click , after a few sessions-I’d suggest moving on till you get the one that’s right for you.
God Bless - Hope you are having a good winter so far. Snowing ❄️ like crazy here !!!!
You can always reach out to the NATIONAL KIDNEY FOUNDATION.
Good morning. Sorry to hear you are feeling so low. Transplants affect everybody in different ways. I am 71 and retired. I felt my transplant gave me my life back and I live it to the full. I had covid last year. The symptoms were mild but it dragged on for 20 days before a negative test. Not qualified to offer advice but maybe some counselling would help. Perhaps contact the kidney foundation or the American equivalent for advice. Good luck and best wishes for the New Year.
Hello sorry you are feeling anxious as I think we all are in our immunosuppressed state. I had covid October 2022 one year and 3 months after transplant. I was careful and work in an isolated part of the building. I hardly had any contact with anyone but one of my colleagues brought the virus to work. Everyone in close contact with them was ok but I picked up the bug unfortunately. We are definitely more vulnerable but I think you have to act quickly once you do and contact your healthcare team they will work quickly to get you treatment. In my case stop immunosuppressants to fight off the virus and monoclonal therapy at the hospital. I started a low grade fever before the monoclonal therapy, body aches, cold symptoms but surprisingly at the end of the IV drip my runny nose had almost resolved. It definitely is concerning once you contract the virus but there are more treatments now so that symptoms are controlled. Hope you can get some help with the anxiety but also live with the level of comfort you are ok with and enjoy it.
Hi, Djangosmom. My advice: Chuck your TV and if need be your radio. Betadine nasal spray and throat gargle kill viruses and bacteria in the nose and mouth. Consider it a 1st line of defense. 2nd line is 30mg of Zinc taken with 1000mg of Vitamin C (which helps zinc get into cells) and which prevents replication of viruses. 3rd line of defense is Vitamin D. Extremely important. My transplant information manual advises I take 800 to 2000mg daily (from food and supplement. I take at least 1000mg). People who ended up in ICU tend to have very low kevels of Vitamin D. Lastly, we are in an information war. Some people want you to be afraid. Fear and anxiety as you know negatively affect health. Practice prayer or meditation, if you are so inclined. Spend time in nature. Walking or other exercise can help reduce stress. I hope this helps. Best of luck!
I can totally relate as I have dealt with extreme anxiety as well since my transplant. I had Covid December 2021 (at Christmas time literally) I did not fully recover until early February of 2022. I’m thankful that I mostly experienced a very very bad cough with congestion. I took a home remedy that actually cured the cough and got me well again. I never stopped wearing my mask and sanitizing. Everyone body is different and some may have experience worse symptoms.
I am sorry that you are feeling such great anxiety. Covid has had a far reaching impact on all of our lives. I have had to be much more cautious about going out and have limited my activities a great deal. My husband passed away suddenly one month after I had my transplant, which was a year and a half ago. It was a very difficult time and I had a lot of drug related complications.
Have you talked with a psychiatrist or psychologist or social worker or nurse about your concerns? I think they could help you think through your worries and develop ways that could help you cope. They helped me. Hang in there.
I got COVID but barely felt it. I took Paxlovid 3 days after diagnosis and already tested negative by Day 6 (3rd day of Paxlovid). I am six years post transplant, and was up to date on all my vaccines. But yes everyone is different, and there are factors including age, and to some degree, immunosuppressant medication taken. Those taking Belatacept tended to fare worse (look up Johns Hopkins study on COVID vaccines on immunocompromised patients.) I take Mycophenolate and Tacrolimus, and I'm age 55. I can understand the anxiety, but don't let that stop you from doing things you enjoy. The first two years post transplant, I got infections more often. During the pandemic, I've hardly had any, likely due to everyone in general following safety precautions. It's important that you wash hands often and mask and not touch your face. I will stay home more when the COVID rates are high in my area, but when it's not, I will eat out and meet with friends, go hiking, even take public transit (though avoid heavier commute times). Best wishes.
I had my transplant 12 years ago and had Covid last month. It was like a bad cold for a couple days, then just lingered on for a few days with just some mild congestion and fatigue. AFAIK the vaccine has yet to produce antibodies for me. The only treatment I received was that I was taken off cellcept for two weeks. I assume part of what made this treatment an option was my time since transplant. FWIW I am 62.
There were some different antibody treatments available if I had gotten worse, but I didn't. You mentioned Evusheld so you should know that it is not effective against new variants.
You should discuss your fears with your transplant department so you can figure out how careful you really need to be.
I think your fear is a logical one. It is always best to not get COVID for anyone. That being said, we are in a much better situation today with excellent vaccination to increase prevention and boost immunity to fight virus. Even if it happens, it isn't as frightening as it was in 2020. I am fortune to not having been infected, mostly due to my extremely careful measures. I am still enjoying life and work but use strategies like going to restaurants at off peak hours and socialize only with friends with no visible symptoms. I think fear can be managed if you catch and stop yourself from rumination. Successfully managed, fear is a protective emotion to keep you away from harm. So don't doubt yourself, just try to balance the healthy fear with enjoyable activities in life. Congratulations for overcoming the complications you had. Now they are out of your way you should enjoy life the best you can.
Hi, I just want to share that I too have had trouble dealing with anxiety since transplant. Like LisaSnow said, your fears are logical. Your anxiety is triggered in order to protect you from danger, that is a necessary biological function. I felt traumatized by some aspects of getting the transplant, and my anxiety was not going away. I eventually found a therapist that I met with virtually which was a big help. Also, understanding the nature of anxiety helped me deal with it better. Therapy in a nutshell on YouTube has tons of short videos by a therapist who does an excellent job of explaining how and why anxiety gets triggered and simple ways to manage it. It’s not a replacement for actual therapy but I found it helpful to be reminded that I can develop coping skills to deal with it. Hope this helps.
Thank you all SO MUCH for taking the time to answer my concerns. I have no idea what brings on the anxiety….most of the time I’m fine, but I have periods of generalized anxiety where everything scares me! For some reason it’s worse in the mornings and gets better as the day goes on. I haven’t sought counseling because I’m usually OK, but I may need to find someone because this is a recurring problem.
I have to go on news/tv breaks when I’m feeling anxious,, so I realize that TV can be a trigger….
(An aside: the profile picture is ME, 64 years ago!)
It really helps to hear how Covid has affected all of you, so again, thank you so much for answering!
I actually pocked up covid post op and was diagnosed 2 weeks later at a check up with transplant clinic.i had mentioned i was a little short of breath off and on and one morning had a fever,but i thought it was allergies cause i have those too.they did a covid test and i was shocked i had it after never contracting it in the previous time since covid started.i later dound out i picked it up at hospital after my surgery as there was a outbreak on the ward.I had three vaccines prior to sx and truthfully i wouldnt have known i had it if they hadnt tested me.I was put in hospital that night to be administered the iv reslyne for three days.I went home day 4 but was testing positive for another 2 weeks but no symtoms.regarding anxiety and that it is the drugs,ive never been so mood swingy and anxious and weepy it nuts but i know that is why.
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