My spouse had his transplant 3.5 yrs ago and we both received our covid19 vaccination/booster shots afterwards. If you got covid19, what were your symptoms and outcome. If you know how you got it, please share. We have been living very isolated for 3.5 yrs. We do not go into anyone's house or allow them inside our home, no restaurants, no museums, no vacations. We do the bare bones of shopping and medical appointments. The first 14 months of isolation was due to a variety of problems after transplant he had and doctors kept telling us to isolate, and then covid19 came as my spouse felt a little better. So we have been isolating a long time. Friends ask us, when can we do normal things? We tell them, we don't know. Our nephrologist at kidney transplant center tells us to continue what we are doing now. We have not done anything 'normal' for so long. THis is not living.
Vaccinations for covid19 done after Tran... - Kidney Transplant
Vaccinations for covid19 done after Transplant: if you got covid19, what were symptoms and outcome
I had my transplant in November 2019. After four jabs and a shot of evusheld, I tested positive with COVID two days ago. Only symptom seems to be a slight headache. I had an infusion of bebtelovimab (monoclonal antibodies) this morning and, so far, have had no side effects.
Thanks for writing, Did you get the infusion at the hospital via iv as an outpatient or inpatient or something else? thanks and I hope you make a full recovery very soon.
As an outpatient. My transplant hospital (and post-transplant clinic) administers the infusion. The infusion itself took less than a minute. The biggest delays were registration and waiting an hour after the infusion to see if there were any side effects. As an aside, I've been informed that paxlovid cannot be used by transplant patients
Hello, AT the last May2022 transplant clinic routine appt, we were told the same, no Paxlovid. Are you positive still now with covid19? If not, how many days were you positive? Do you have someone living in your home with you and if so how did you cope with this , trying to not spread it ? Its just me and my spouse with transplant and we have chosen if I got covid19 and he did not, I'd check into a motel in town. Our house is very small with 1 bathroom. Not easy to isolate. Was the Evushield difficult to obtain since there is a shortage of it being manufactured I had read months ago? His clinic in May did not even mention this drug to us.
My PCR test showed positive two days ago. (My home test two days before that was negative.) I haven't rechecked.
I'm living with my wife, and her mother and health care aid. In addition, my daughter and her husband and two-year old are visiting. My daughter was the first to show positive, then my grandson and then me. Everyone else is negative...so far. It's tight but we've doing our best to isolate. My daughter can mingle again on Thursday and I can on Saturday.
I had to ask for the Evusheld--my clinic didn't mention it either--but there was no problem in getting it. I'm guessing that that's how they allocate the treatment. People who keep informed, get it; those who don't, don't. Seems unfair to me.
Thanks for sharing. I had read that people who are immunocompromised can be positive 3 wks after they are positive at day 1 with covid. Please make sure you check yourself before feeling great and not knowing you are still positive and spreading the virus. I am sure , you know what to do. You have many family members to consider in your home. I wish you the best with this virus.
FWIW, the nurses who administered the monoclonal antibody infusion to me said that I needed to quarantine for five days after testing positive, but wear a mask for 14 days.
I believe that being immuno-compromised means that you're more likely to catch COVID-19, not more likely to spread it.
I am sorry you and your family got it. Sounds like you are getting better with symptoms that is great. Continue to rest up. Just a note, immunosuppressive medications can actually decrease body's ability to eradicate viruses and as a result, making the person more likely to hold on to more viruses and for longer, which enables "hosting them" longer to pass to others. So it is both - increases risk of getting and spreading the virus.
Thanks LIsaSnow, what you wrote is what I've read in my research. I do alot of ongoing research on my own when it concerns my husband's transplant, covid vaccinations and such with covid19. I just wanted to hear from others living a similar lifestyle due to compromised immunity after having all vaccinations/boosters. I wish you a great day giving your caring spirit to others.
You are too kind. Your husband is truly lucky to have you as his caring partner. It can be difficult to see our loved ones suffered from illness especially in a pandemic.I understand every one is at risk of COVID because no vaccine offers 100% protection. However, reading how isolating strict staying inside a home can be, benefits may outweigh the risk if the two of you go outdoors for walks or just taking an outdoors ice cream "date" a few times a week to break up the norm. We got to be careful but enjoy life too. As long as good hygiene, social distancing, and good masks are being used, it should be good to go outside and get some fresh air.
If one of you do get it, staying in a hotel for the protection of the other like you planned, is reasonable and sound. It's best not to get it of course but having a plan in place is wise.
Hello, THanks for writing me. WHere we live it is 7 months of cold or very cold. My spouse never did get back into long walks alone or with me after this transplant years ago or now. I am the one who is outside often even in cold weather taking 45 min walks in our village. I garden alot and he helps in some processes of growing our veggie garden and an annual flower garden. What we both miss the most is being around people and due to schedules and weather and their family obligations, its very difficult to manage. SO we don't see friends like pre transplant and never inside a building/home now due to covid or after his transplant due to problems he was having over a year. We just watch assorted tv programs we like in the evening and putter outside or indoors when weather is nice. Our county has been high positive 7 wks in a row and in past months , this is the normal for over 20 wks in a row. It is something we navigate as we run necessary errands.
Baby steps. It is impossible to be back to the Pre-COVID and Pre-transplant self quickly, but with baby steps and creative ideas, the newer self may be the best yet to come. He may enjoy a Zoom get together with family and friends projected onto TV to begun with, and attend Zoom church services if you find one you like. I found picking up a new hobby to be great for my mental health as we both work from home and I am bored often. I hope he will open up to try new adventures with you soon.
HI LIsaSnow, Due to how he feels on 14 medications and insulin 4X a day, he feels more lousy and 'off' daily than he did going through chemo at age 30. HIs doctors know all this and they are so happy with his blood labs and know there are side effects to meds that goes with the situation of a transplant. 90% of the hobbies he/we had done he cannot do because of how he feels and lack of energy and trembling. He is more accepting of all this change than I am. What we really thought he'd gain years after a transplant 'still' has not shown up. WE've tried zoom stuff and neither of us connect with it. I don't know why. THanks for your caring spirit. WE just keep trying different things and hoping something 'clicks' someday.
Has he been referred to physical therapy?
Hello, no, he never was referred for physical therapy. Very very slowly he recovered on his own but I strongly wanted him in PT so that he would not hurt himself.
PT knows a lot of good exercise to do at home to prevent sarcopenia. Daily exercise including chair exercise has been shown to improve cognitive ability as well. I hope your PCP can refer it for him.
I have a phys therapist on speed dial for myself and use them often in 20 yrs for assorted things since I'm active. My spouse may or may have not spoken to his primary doctor about PT. THe time I feel he really needed it was early 2020 about the time covid19 arrived and everything shut down. FOr ? reasons, he does not seem to use all the specialists available to help with such physical issues like I do.
Why does he need it? Sarcopenia is a very serious issue especially in the elderly. Our muscle is a "use it or lose it" system. From your description of him, he has not been minimally active for a long period of time. The loss of muscle strength compounds the fatigue and depressive symptoms as well as cognitive abilities as research demonstrates. Sarcopenia in severe form becomes cachexia which is the leading cause of death in cancer or other serious illnesses. It is extremely important to incorporate activities that he can do within the confine of your home to improve his overall condition. It only takes a chair, an exercise band, a repeat of 10 gentle movement a day to start. A PT is a professional whom has skills to convince and motivate a patient more effectively than patient's loved ones. For someone suffering multiple setbacks from a major surgery, getting stronger with a gentle and effective strategy that a PT can teach, is essential.
Hello, I don't know where 'scarcopenia' came up for I had to google it. My spouse slowly on his own pushed himself after and during all of 2019 which was filled with so many transplant set backs for over a year. His doctors knew what he was going through and examined him and felt his muscles were not atrophied bad enough I guess to warrant PT. It was not discussed to go see a PT 'ever'. Now after 2019 is behind us, he is doing better but no where as good as prior to transplant in 2018. Maybe in time he will slowly get better. THanks for your concern.
Some articles if you are interested:
ncbi.nlm.nih.gov/pmc/articl....
academic.oup.com/ageing/art...
consultqd.clevelandclinic.o...
bu.edu/articles/2010/exerci...
Thanks
I have a friend that was reluctant to get vaccinated. She is 18 years post transplant. She got COVID last Fall and now is back on dialysis. COVID attacked her kidney transplant and is now in renal failure.
Hello WYOAnne, I am so so sorry to hear this news about her being on dialysis again due to not getting vaccinated. I hope something positive happens for her. I really do.
Hi Gardner-NY, My husband is just 6 months post transplant now but doesn’t have medical challenges other than kidney failure. He had to leave the hospital early after his operation as so many of the staff were testing positive. At the time, terrifyingly, they told us he had a 30% chance of dying if he contracted covid so we understand your fear (although I suspect this statistic was out of date, even at that time). I feel we have been constantly weighing up risks vs. necessities ever since - often with little information to go on.
We have school-aged children so necessity for us has meant quite a lot of contact with the community. This has brought enormous stress and worry but also greater support and, unfortunately, a bout of covid from our kids.
After testing positive, my husband continued Tacro and prednisone but stopped taking CellCept to reduce risk of pneumonia. He took a 5 day course of Molnupiravir and tested negative on a PCR at around 2 weeks after having had only mild symptoms. Of course, we were concerned throughout, but he was fine. (His brother in Australia had covid at 9 months post transplant and made no changes to meds - also fine).
We are learning how to manage the mental health challenges as much as the physical ones - and to control what we are in control of (mask-wearing, hand-washing, physical distance). We haven’t exactly relaxed about it yet but we have been out for dinner, met with friends, and attended a school function - doing some of the ‘normal things’ has definitely helped us to feel more human.
Wishing you good luck with everything
THanks for your response Capecorp. I understand the risks we all are under as families with one person managing their kidney transplant is different. For over 3.5 yrs now we have not had anyone in our home nor we in theirs due to the first year of assorted serious problems my husband had after transplant including a low grade rejection. His doctors were in agreement how isolated we lived plus my spouse felt rotten for 14 months due to all the problems. Now we seem to live in a county where people in the county cause the high covid19 rate with the CDC tracking status we check once a week versus , get vaccinated and stay current on them if you can so the county can be low. WE are just concerned and that is why we live the way we do. Just us two, no kids, no family nearby. For now its the choice we've made and I have no idea when we can do some normal things like pre transplant. I'm in my first ever in life depression for over 2 yrs now and working on getting out of it. I am an extrovert and my husband with transplant is more introvert. THanks for your response, it means alot. I wish you a good summer that is healthy for all.
I received the 2 injection medication Evusheld to lessen the symptoms of Covid should I become reinfected. Instant lab created antibodies developed in South Korea. It is still an experimental med, given emergency use authorization by the FDA. No pain, for me, from the injections, the only side effect appears to have been a low grade fever that was gone in a day. It is available only for severely immune compromised individuals and apparently nobody knows about it. I’ve read reports of stockpiles of it in government freezers because it is unknown to the vast majority.
Hi KerryBMarino , I hope this injection medication helps you alot. It has been around for at least 6 months I've been reading about it mostly on this site, but some areas of the country don't have it for ? reason. Our VT transplant clinic did not bring it up as a good option to take at our May 2022 visit when we discussed what more can we do so my spouse and I can have some normalcy to our lives. I feel like we live in a snowglobe isolated. THanks for writing.
Hi well I had my transplant 21 years ago and I had the vaccines and unfortunately at work I got covid 19 and I had no idea AT all I had was bad heaches and a cold that's it did not became worse thank God it was only those symptoms I was told by my kidney dr that vaccine is to protected me from getting it worse or end up in the hospital just get a cold or headaches mild symptoms Reguards being isolated it's hard you can't life live in fear of getting it u need to go out and live as long as u wear a mask and have hand sanitizer you will be ok. I felt the same way believe me its hard but you have to life ur live and to be honest with you no matter how much you take care of urself is unavoidable to get it PLEASE DONT LIVE IN FEAR .... EVERYTHING WOULD BE OK..
HOPE U TAKE MY ADVICE.......💚💚💚
TAKE CARE.
HI JenniferIt is my spouse with the transplant of 3.5 yrs. WE saw his kidney transplant doctor in May and he agrees with all the isolating things we are doing. THe first 14 mos after the transplant Nov2018 was filled with nonstop serious problems and when they ended, there was 6 mos of 'reprieve'then covid 19 arrived mid Mar2020. THe first 14 mos we had to live isolated due to his problems and the doctors telling us to live this way. I am his healthy spouse and its just us 2 in this journey in life. Family live far away. It is a choice we both have made to live isolated and only do activities with a few friends at a time outdoors. 7 mos of the year here is wintry, so we have few times to do things and people are busy with other things which don't include us. OUr county has been high covid19 positive more than not since it started. My being an extrovert has made living this way hard. I keep reading national newspaper articles that many people that are immunocompromised due to organ transplant and other health reasons are living similiar to us. ITs not fun, but until something is found to work well, its how we live for now.
Oh ok I see and complete understand !!! Ur husband ur yourself don't want to put him at risk but at the same time is hurting both estate of minds !!! Anywayz try to be positive and hope better for you guys soon God Bless......
HI Jennifer24, thanks for your caring spirit. I wish you the best in our health.
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