I’m 3 1/2 months out from transplant. My husband and I have been isolating since COVID-19 with a few instances of freedom with a few road trips when cases were down And we did attend a wedding that was mostly outside and everyone had to test for Covid. My husband did have to attend a business trip as well as a few work meetings. He wore a mask on the plane and we isolate from each other the first five days and then test. So far this has worked for us and neither of us has gotten sick in general including COVID-19. I think we are the only ones left In the USA who have not gotten Covid lol. Now that mostly everyone has had it, nobody really requires testing before big events anymore and certainly nobody requires masks. And now that I’ve been transplanted, any infection is a concern. My question is, when did you feel safe after transplant to go out ie travel on an airplane, be around others in a large group like a wedding , eat inside a restaurant, shop in person at a store, be around others who have to be out or travel without having to quarantine for five days-Basically live life as normal again after transplant? What steps do you take? I know just staying home is the safest choice but it is not feasible since my husband is ready to lose his mind from the isolation and I don’t want to become that person who is so afraid to go out that I Stop living. (I have asked my Transplant Center but it just depends on who I ask- some give more cautious advice and some tell me I can just go out and use hand sanitizer. Very confusing.)
How do you treat colds and other illnesses after transplant? For those of you who got Covid after transplant for the first time, what was it like and what treatment did you utilize especially recently with the newest variants and the fact that there are no affective monoclonal antibodies and we are not supposed to take the antiviral? Thanks everyone! I really appreciate you.
J
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Jamok
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I am 3 plus years on from transplant. In the first few months I got taxis everywhere and once asked my consultant when would it be safe to use public transport. He was surprised …. He said we’ve given you your life back, start living it, from then on I’ve done just that
I have had Covid twice and was treated with antibodies.
Yesterday I was bitten by a dog and just got a tetanus . Friends and family with immune systems have had more colds and sickness than me.
Simple precautions and observations should enough to keep you safe.
It’s a challenge to overcome fears but very rewarding when you do.
I was very nervous also , trying desperately to get all the answers & feeling more & more confused after having had a transplant during a lock down & trying to decide if I should travel from New Zealand to the UK for a family wedding , arrived back home with covid & jet lag together & still so very glad I went , my theory is the best protection against Covid is having had Covid , hope that’s helpful , I believe having had Covid protects better than vaccination which I had + some
Hi Jamok! Congratulations!!! The viruses that live within you and that have been dormant due to the immune system you used to have are the bigger challenges, in my experience. As I have posted elsewhere, I spent about the first 7 months fighting c-diff, BKV and CMV. Live life and enjoy time with those you love. Life is short. Keep fear to a minimum as it affects health in general and know you are already doing your best to maintain your health. Physical health is part of the whole, but not the whole. Social-emotional and spiritual health need balance, too. Have a beautiful summer with your new kidney!!!
I am also struggling with this and feel you so hard on the getting different advice! No one is gong to say definitively this is okay vs this is not and it’s frustrating. I am many years out of transplant but on mycophenolate which I’ve learned both reduces vaccine response and can increase severity if you get it. Anyway, I’ve been operating on a case by case (frustrating, I know). I got married 8 months ago and had everyone vaccinate/bridal party test. I am okay accepting the fact that I will travel/fly with a mask indefinitely..That’s not a big deal to me as I was already a germaphobe for flying pre pandemic but love to travel. I’m on the fence about eating indoors but I’m comfortable eating outside or even festivals as long as it’s outside. We do need to find our balance and enjoy life!
knock on wood no I haven’t gotten Covid, neither has my husband who has worked in an office through the pandemic and also travels a lot for work. KN95 mask worn properly. Up it to an N95 (over the head) for flying in particular. I didn’t wear one before Covid, just used sanitizer and always pick a window seat.
Hi Jamok, My spouse of over 40 yrs received his kidney transplant 4.5 yrs ago. The first 14 months were very difficult with assorted health issues he experienced and he was a couch potato often due to extreme fatigue and other issues more serious. Then covid arrived, as you know, March 2020. We are still now living like its March 2020. The only thing we both have done since 3/2020 is once a week use pharmacy drive through for medication pickups, go to grocery store during off peak times. We have not allowed anyone in our home since Dec 2018 and we don't enter other people's homes if they work full time or are socially active around different people all the time. I am healthy and could not obtain the 2nd bivalent booster shot due to not being 65 and being well which upset me so much. I tried different things to no luck. My spouse is 63 and did get this vaccine. He is an introvert and I'm an extrovert and depression arrived in May 2020 while I was working from home and still with me. We both wear N-95 masks when we are at a medical appt or necessary shopping. We have not traveled for enjoyment since Oct 2018. I was very disappointed in the two kidney doctors my spouse sees on what we can do differently due to covid19 and their vague responses. It really depends on your risk and my spouse feels he is high risk after the first 14 months of many serious problems he experienced, so he takes almost no risk to get covid19. We both have not had this virus. I hope to hear from others. It really depends on your risks in life. I feel very uncomfortable doing something on my own like "normal precovid" . Our game plan is if I was positive, I'd check into a motel if he was negative. My car has been packed with necessary clothes and toiletries since May 2020. We feel very stuck in life and exist and not live anymore. We never feel we get any support from the many doctors we know well on how to move forward. I wish you all the best.
Sorry to hear you are so isolated! I can tell you that my husband and I are the opposite of you, i’m the one who could probably stay in my house the rest of my life and my husband is getting extremely stir Crazy. So to compromise, we have gotten together with our four adult children and their boyfriends inside after they test. In the summer, we just stay outside, and I also have a screened porch which we can eat on. They sit at the table. I sit at a chair in the corner away from the table. I have gone to outdoor restaurants. This was all before I had my transplant. Since my transplant, I have gathered with my kids several times outside and have eaten on the porch and so far so good. We have also gotten together with some family members outside and visited my mother-in-law at her senior apartment outside and I wore a mask for the short distance from the front desk to the outside patio. I also attended an outdoor shower with about 35 women, I kept my distance and did not eat the buffet. I left before games or present opening. I also wear a mask to all my medical appointments or anytime I have to go inside. I do not go into stores but do curbside always.
If your husband is comfortable going into a store, would he be comfortable being outside with a few family members/friends who have tested first? What about eating outside at off hours, bringing your own silverware and water bottles and ordering from online menus or going for a walk on a quiet beach or park? Or perhaps a road trip and stay at a rental house that you have sanitized? Or camping?
I know you’re not asking for my advice, but I’m just a wondering, if he’s OK with a store, why not some of these, in my opinion, even less risky endeavors so you don’t have to feel so isolated. Your health is important too and depression can be just as life-threatening as kidney disease.
Hi Jamok, We have no family where we live , they live very far away. We have no children. We don't have places to eat outside where we like to eat at anyways, we have around 7 months of cold or very cold weather where we live. Like I said, he will shop 'off hours' and grocery stores have very high ceilings like a warehouse, so ventilation is big. On top of covid19 and how we live, my husband's energy and other negative side effects has been his 'norm' taking his anti rejection meds despite many tries to change them to something else or the dosages. It happens to some people. He had a rejection, very low red blood counts for 9 months where I gave him shots 3X a week, and also CMV virus happen the first 14 months after transplant then covid arrived. His body went through many negative challenges and some he never has recovered from. Like I said, everyone is different in how their bodies handle antirejection meds. His existing very maintained diabetes before transplant got very complicated after transplant and still is no matter what he does. Many factors other than covid19 play a huge role in why we live the way we do due to how he feels. Everyone is different. Is this fair to us, absolutely not. It is what it is. We h ave yet to celebrate anything really with others. I feel like we live in a snowglobe and watch what others are doing and we are inside. Even his many doctors don't have ideas on what we can change that we have not already done. This is the most difficult challenge in our over 40 yr marriage. Harder than when he had cancer and went t hrough chemo 9 months 33 yrs ago. He says that was a picnic compared to what he went through the first 14 months . We both are military veterans and have gone through alot in life, but nothing like the past 4. 5yrs. I sincerely hope you live your life to your fullest. I really do.
I am 14 yrs w/ transplant & had severe CMV 2 yrs after with extremely high counts. I was in cancer unit for 5 weeks with 2 infusions daily. I recovered & since then have had Thyroid cancer(7yrs aftertp), Afib real bad…4 Heart ablations to try & fix it, a pacemaker installed, & 2 hernia surgeries since transplant. The first 5 years are considered easier, as the longterm side effects of the meds has not had strong adverse affects yet. I think wearing a mask where there are crowds indoors, & eating out at 4:30 or 5pm before restaurants get busy has worked well for me. I got covid last Sept & thought I had just caught a bad cold. I did not take any antivirals to treat it. It was not a big deal. I’ve had colds as bad. My secret for treating colds …that was given to me by some elder Thai ladies years ago, is when you get a cold, or you feel like one is coming on, drink lots of hot honey, lemon & gingertea & even just hot water(as much as you can), … and take lots of hot baths and showers… multiples in a day. I had a cold last week and I did this and my cold was gone in under four days. Lots of sleep too. I honestly don’t think it’s healthy to live your life in depression & isolated. . There are many things you can do outdoors & even indoors to enjoy life. Possibly move to where it is not so cold. Walks in the park, hiking, a membership at the YMCA or fitness club and going lap swimming or join water aerobics, training on fitness machines, playing pickle ball or tennis (possibly finding some playmates that support your health needs), eating out, stargazing, plays, afternoon movies when there’s a few or no people there, and taking trips, even just a few hours away, or a day away, renting a hotel or airbnb, which they all do extra sanitation now, and explore history, nature and culture. I was told by my transplant team at Ucsf to do as much weight bearing exercise as possible to minimize future pain & deterioration in my hips, and to keep myself healthy . After 5 years this became way more necessary due to the impact of the anti-rejection drugs. Weight, bearing exercise includes hiking, jump rope, playing tennis, & basketball,. You can Google to find out which exercises are weight-bearing. Swimming and biking are generally not weight-bearing. I have read that weight bearing exercise is the only cure for bone deterioration in the hips from the anti rejection drugs. It gets painful….unless I keep moving & exercise often . My husband and I just got home from Ireland for a month (and we walked 4-8 miles per day)… He arrived home with Covid and I did not. Live your life … and just make conscious choices & be aware where ever you go. When I fail to hike for a few weeks…I start to feel crapy. When I hike…I feel great.
Thanks Tashikat and I hope your health journey with your transplant goes better than it did early on after the surgery. My spouse 4.5 yrs after transplant felt better 'before' the transplant. He has yet to feel good an entire day yet . For him, its the antirejection meds and how it affects him and his diabetes situation. WE used to do a zillion things alone and together and now he does not have the energy nor does he 'feel good'. All the ideas are great for a person who has energy and feels good (like me, the healthy person), but not my spouse. Everyone is different is all I can say. I'm happy you are finding a zillion things to do with your husband together. That is not the case now with us. Take care. We both have always been super active doing all kind of strenuous things together in nature while we were both in the military and after, but now since the transplant he has not bounced back like others have, like you have. Take care.
I am so sorry for his outcome. Diabetes is not an easy road. Eating healthy is a good preventative for so much…but having pancreas challenges from it are hard to manage I imagine.
I am almost 2 years post transplant. Age 77 at time of transplant. Female.
I have an extremely low white blood count and am treated with neurogen. This makes me highly susceptible to infections. I would never go into an enclosed restaurant, an airport registration area, big groups like an indoor wedding, professional conferences with large attendance, cruises, or similar situations. I always wear a mask even though it is no longer required and practice social distancing. I find people are understanding.
I rely on me renal team for advice. I comply. I am in contact with them every week. My situation is so serious that they tell me to be very cautious. Getting co-vid or flu or a "bad" cold could be disastrous.
My new normal is just fine with me. I still see family, friends and neighbors. I know they are vaccinated and they usually wear masks when needed. I have a lot of interests/hobbies. I am so grateful to have received the gift of life. that I will not jeopardize my transplant and health.
I know everyone's situation and health is unique so what anyone can do varies.
I think all of the above are very safe. If it was just up to me, I’m content living as we are, seeing our family and friends outside and avoiding big events. But my husband loves to travel, and we have weddings coming up that are very important. I’m just trying to find the balance between being safe and living the life that honors my little kidney bean’s sacrifice. Life isn’t meant to be spent in a bubble but just going out and ignoring all safety precautions is irresponsible. I’m thinking wearing a kn95 mask, sanitizing often and avoiding large crowds, especially when cases are high, could be the way to do this. thanks for your response.
you’ll find a comfortable balance. My team at osu said yes be careful but go live your life now. Wear a mask, wipe down touched surfaces or keep hand sanitizing. I’ve been out a few times and I’m 7 weeks post op. I don’t mind being home but it’s been almost 2 years so I try to get myself back. I laugh, I see close family and friends who make me feel good and it’s been helpful for my emotions. The rejection meds are making me feel low like dialysis did and I hate that feeling. I have a wound issue too. But I powered thru events knowing I’ll be exhausted the next day. I’m nervous about infections and re-hospitalizations for sure but I try and remember that this is a different start on life again. If I was going to have major surgery to get off dialysis I’m making the best of it. I took my sisters kidney so I have a lot of guilt.
i had covid last fall & it was a bad cold for me. My secret remedy given to me by elder Thai ladies years ago… Is to drink as much as your can of hot tea (lemon, honey, and ginger) or just hot water, & also take multiple hot showers & baths each day. It’s much easier to minimize the cold severity, Lots of sleep. if you jump on these things when you feel the symptoms coming on. If the cold is real bad, I may sometimes take a Cloricidin capsule to get myself to sleep…as it does not contain anything contra indicatiins to my transport meds.
My husband received his kidney transplant exactly two years ago today. We are so grateful. And we're living life in a very normal way. My husband has always had the mantra to leave the house daily whenever possible for a "cup a coffee" or whatever. He's done that his entire adult life. We did take great care during the three or four months while his immunosuppressants were being adjusted and so on. After that settled down, our transplant center relaxed the rules for dining out, traveling and so on. So we quickly returned to living life well. We monitor our environment well as all transplant recipients should do, but we are not held hostage by it. We get our immunizations on time, we have taken several vacations together, have our coffee daily at local coffee shops, and we dine out weekly. We even watch our grandchild playing soccer, making sure my hubby has on sunscreen and wears his cap. We keep umbrellas in the car if sun really gets out of hand. No, we no longer wear masks, but we use sanitizer consistently. When we visit our daughter, we rent a nearby place so my hubby can distance himself a bit from the children when they come down with runny noses. And so it goes. I contracted a mild case of Covid, but my hubby avoided it even though we live together in the same house. My hubby only picked up one cold during the past two years; everyone can expect to get a cold sooner or later. It isn't a death summons in the vast majority of cases. We simply turned to our transplant center notebook with its list of over-the-counter meds, picked one out, and recovery was uneventful. Transplants are meant to give your life back to you. Enjoy! Embrace it! Simply live your life with awareness and you will do great.
Jamok, I also got transplanted recently. I am cautious with what I can or cannot eat. I was really thinking the post transplant was going to be worst, but mu doctors put me at ease. I had a successful surgery and in general a good recovery. I have already gone to restaurants. We go at odd times do we expose ourselves to fewer people. I also wear a mask and ask for a table away from others if possible. I wipe everything and wash my hands often. I am not eating raw vegetables out of the house as I am unsure of how they are cleaned. I have travelled by car, not plane, yet. I had to use public restrooms, I stayed at hotels. So, I check ratings for cleaning and I didn't have a problem. I had not ventured into huge cowds like wedings or concerts, but I have gone out and visited with friends. Outdoors seems safer. As people have said, we didn't go through a transplant to end up isolated if we don't have to. We got it to live some more. So, I intend to do it, with caution, but I want to live. I think Covid was a good preparation for post-transplant time. I hope you find your comfort zone. I start working in 2 weeks. And I am a teacher, so school setting scares me, but we'll see how it goes!
I too am one of those rare people who has never had covid. Two people have said to me, You are the only person I know who has never had it! I wear a mask absolutely everywhere, since about two months after Covid started and they began recommending them. One exception was a family reunion last December. No one else was wearing one so I didn’t- most of the events were outside and at inside meals we were pretty far apart. I still avoid going to the grocery store and the pet food store, Until year two I avoided going to any stores like Macy’s etc but eventually decided my mental health was suffering and have gone into a few stores like that a couple of times. When I go to the occasional dinner party, everyone takes a Covid test for me. I get boosters regularly. The only plane flights I have been on since Covid started were the ones to my transplant evaluation and the one to my actual transplant (drove home 6 hours after my transplant.) My family is pressuring me really hard to fly to Virginia for Thanksgiving but I am not sure I am OK with going. Fortunately I see my transplant center for a 4 month follow up in October and I can always blame it on them saying they told me not to go.
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