I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: jenb on February 17, 2022, 02:43:06 PM
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Wondering if your doctors have recommended you get the Evusheld medicine (two shots in the butt to help with immune response to covid). I am almost three years post transplant and my doctor has suggested I get it. Not sure how I feel about this and wanted other views.
When I talked to my doctor yesterday which was my early three year anniversary appointment, I told her I had my covid booster she said no I had not. Three covid shots are required post transplant and the fourth shot is considered the booster. She said get the booster and she would like me two weeks later to schedule Evusheld in Seattle at the hospital I had my transplant.
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Everyone in this group https://m.facebook.com/groups/466673867776866/ who have not built antibodies after vaccination are trying to get it - Evusheld. The General can consensus is that if your antibodies are below like 1000 on the LabCorp level you should go ahead and get it. Many people can not find sites which will give it to them. It’s very hard to get so if you have a source and low antibodies get it. It’s an infusion and you have to wait around an hour after. I’m not hunting for it since my levels reached the max at >2500 after my fourth vaccination in November.
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Yes, my transplant team wants me to get it. I see no reason not to.
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I had my three vaccinations and still use a face-mask whenever I am not at home and shall continue to remain very careful at all times and have not heard anything about a fourth vaccination ... but this is not surprising since many "people in positions" i.e. our Prime Minister and many of his "friends and colleagues" have celebrated parties whilst the "rest of us" was in lock-down and adhered to it ... and ... because of this, many people here are very confused about "it all" right now ... and all these parties, attended by the Prime Minister during lockdown, are currently being investigated by Police Officers who are looking into "potential breaches of Covid-19 regulations" in Downing Street and Whitehall since 2020 ... :urcrazy;
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have not heard anything about a fourth vaccination ...
Here in the US most people were getting "additional" shots for a third dose starting in maybe August. I jumped the gun because i could and didn't have antibodies and did that in May when I was in another state. Lacking public medical coverage our vaccine strategy has been delegated down to the state level and future to individual counties in some states. I don't know if pharmacies in my home state would have known about my first two shots but I did the third out of state just in case they could tell. So my fourth shot, which was not an additional shot but rather a 1/2 dose booster due to the pharmacist not knowing the new guidance, looked like my third in my home state.
Then near the end of the year or in the new year they said people like us could get fourth shots five months after the third shot. That fourth shot would be a booster - a half dose. More recently they are saying you don't need to wait five months but rather three.
At my nephrologist visit he mentioned that he didn't think I needed any more shots. Since I build the highest level of antibodies after the fourth shot I didn't ask more questions.
All the previous shots were done on my own without guidance from any doctor. That's because here in the US the transplant centers are not making any recommendations until the CDC tells them what to do - but luckily people like me and others in the John Hopkins study have gone out on our own and generated data to help inform the new CDC rules. Plus we get some good data from other countries including Israel.
Here in the US there is a test that reports antibody levels titled: SARS-CoV-2 Semi-Quant Total Ab - or Roche Elecsys Anti-SARS-CoV-2 S https://diagnostics.roche.com/global/en/products/params/elecsys-anti-sars-cov-2-s.html.
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Hi kristina,
Evusheld is not a vaccine and it is a separate drug altogether from the vaccine + booster regime.
Evusheld is a combination of monoclonal antibodies that acts different than a vaccine, but prevents those with low antibodies (transplant patients) from getting sick.
Anyway, it is not approved yet in Canada (although I have seen people lobbying the public health people on social media) but I would take it if offered.
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Hello again and I am very grateful to iolaire and Ukrainian Tracksuit for the very helpful information and Evusheld sounds like a great idea and I shall look out for it.
Many thanks again from Kristina. :grouphug;
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My nephs (2 of them, I alternate appointments between my long time pre-xplant neph and the MD at the transplant hospital) both advised 4th dose at least 3 months post 3rd dose, min 3 month separation, other brand (Pfeizer rv. Moderna). My local guy can't get any Evushield, and the one in Boston tells me I am not high enough risk to meet the rationing critieria. Next time I see him in person I will ask if the reason I do not qualify is because I do not have racial bonus triage points (don't know if they are doing that in MA).
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I have had 3 Moderna vaccines plus the booster. I had read about Evusheld but hadn't started looking for it. Then I ran into a friend who said that one of our local hospitals had it. I checked with my clinic and was told that if I could find it, I could have it. I called the local hospital and they gave me the info although it was clearly a work in progress. I had my PCP sign off on the script and was able to make an appointment. It took about 4 days with all the back and forth. At no point was I told they were running low on it. My friend had to bring proof of a negative COVID test but I was told they'd give me the COVID test when I got there. When I arrived they said "where's your COVID negative proof". But they were nice, gave me the COVID test, I hung out in my car for an hour and then they brought me in to the ED. I talked to a nurse and then a doctor and then I was given the 2 injections. Then I had to wait there for an hour or so. According to the COVID Therapeutics Locator website, there still seems to be quite a bit of Evusheld available on Long Island. My clinic hasn't offered much at all in the way of guidance except for tracking our initial vaccines.
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I think it is pretty cool that you guys south of the border have a COVID therapeutics locator. For real, that is pretty nifty and I am kinda envious! ;D
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I only found it by chance. Sometimes I think there's too many resources. And opinions, lots of opinions, that's what we have the most of.
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I think it is pretty cool that you guys south of the border have a COVID therapeutics locator. For real, that is pretty nifty and I am kinda envious! ;D
The locator includes "we have it in stock for those we choose to give it to but you can't get it from us" places - like the hospital that handles my follow-up care.
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Eh, I'm in the same "we choose who we give it to and you can't get it" boat, but for all I know, the Evusheld in my area is kept tucked away in a mystical cloud, rather than a known physical location.
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Hi kristina,
Evusheld is not a vaccine and it is a separate drug altogether from the vaccine + booster regime.
Evusheld is a combination of monoclonal antibodies that acts different than a vaccine, but prevents those with low antibodies (transplant patients) from getting sick.
Anyway, it is not approved yet in Canada (although I have seen people lobbying the public health people on social media) but I would take it if offered.
Hello Ukrainian Tracksuit, and many thanks again for your most interesting information. I have been asking about this, but so far without any clear results, so I shall continue to ask whilst keeping-up with my precautions like face-mask etc.
Nevertheless, I was recently "battling" with some flu and cold symptoms, i.e. very runny nose, heavy cough etc. but no signs that it affected my chest/lungs, no temperature and a reasonably normal BP plus my Covid-test was negative and I asked my GP for advice and he checked-up on my last blood-test-results and told me, that my immune-system seems to be working very well, considering the transplant plus anti-rejection-medication and he prescribed me antibiotics all the same, just in case. But, he thought, that I could see, whether my body might be able to deal with this on its own and then immediately start the antibiotics, if I have an instinctive feeling, that my body really needs antibiotic help. So, I took the greatest of care, waited and observed and took a teaspoon of kiddies-cough-syrup once every day and just imagine: after a few days my cough became less bothersome and after a week my body was back to normal again without any cough and without introducing antibiotics. Now I really feel very chuffed about this wonderful experience and it gave me a bit more confidence ... and I shall go from there ... Of course, it could be, that I was just very lucky on this occasion, but I am very much hoping, that my immune system might slowly build up again ... ? :grouphug;
P.S. Has anyone else gone through such an almost experimental experience? I am asking because I was wondering whether or not it could be a bit too risky?
Many thanks again from Kristina. :grouphug;
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Hi kristina,
It is important to note that just because we are immune suppressed, it does not mean that we do not have a functioning immune system at all. All of us transplant patients get our tacrolimus levels checked at our regular blood work specifically for the reason that there is a balance to be had. We are immuno-suppressed to the point that we do not reject our organ, but not so much that we do not have a functioning immune system at all.
Unless there was something showing up in your white blood cells that something was off, your immune system won't necessarily "build up again" because it is being chemically suppressed but only to a point. There is a reason why infectious disease doctors dealing with transplant patients lower immuno-suppression levels when certain viruses show up (BK Virus, Epstein Barr, etc). It is because they are allowing the patient's body itself - its natural immune system - handle what it can on its own.
That said, compared to the regular population, we are more at risk of infectious or severe outcomes of certain viruses/infections, because we are chemically immunosuppressed to that balance. For example, I am on lowered immunosuppression right now in preparation for the 4th booster shot. This is to allow my immune system to better receive the vaccine rather than having mycophenlate jump into the way. We still need whatever pharmaceutical options are out there to protect us.
Obviously, I am not a medical professional, but in the case that you mentioned, I would not say it is risky. As transplant patients, we get colds and flus like anyone else. I can speak for myself and say I have had colds where I did not take any antibiotics. My body handled it and I gave it lots of rest. That said, I monitored my symptoms. No fevers, no "infected" looking phlegm, that sort of thing. Urine output normal too. Naturally, if you feel you are not getting better for a certain amount of time, or you feel your vitals are not good (respiration rate is a big one to watch now), then contact someone.
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Well, it's official, Evusheld is approved here!
"An estimated 14 per cent of Canadians aged 15 years or older have a compromised immune system that increases their risk of adverse outcomes from COVID-19, according to a Statistics Canada survey series from 2020."
Hahahahahaha, 100,000 doses for 14% of of the 38 million population. Hahahahahahahahaha! Well, best wishes to those who can get it! Sincerely. Rather protect some than none.
https://www.cbc.ca/news/health/health-canada-evusheld-astrazeneca-1.6419675
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I can speak for myself and say I have had colds where I did not take any antibiotics.
Antibiotics are ineffective against colds unless there is a bacterial infection along with the cold virus.
The are sometimes prescribed because the patient feels better if the MD is "doing someting". I once had an MD tell me "An antibiotic won't help you, but I'll prescribe one if you want".
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I can speak for myself and say I have had colds where I did not take any antibiotics.
Antibiotics are ineffective against colds unless there is a bacterial infection along with the cold virus.
Really, you don't say? ::) In the words of Leonard Cohen "Everyone knows.."
It's so fun to take things out of context from a larger answer..
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In regards to the Evusheld injections: I received my Explanation of Benefits from Medicare today. Medicare paid $1721 for my care! My Supplemental paid $15. I paid nothing. Our tax dollars at work.
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In regards to the Evusheld injections: I received my Explanation of Benefits from Medicare today. Medicare paid $1721 for my care! My Supplemental paid $15. I paid nothing. Our tax dollars at work.
Interesting work if you can get it:
1. Hospital gets free Evusheld paid by the governmnet
2. Hospital sells Evusheld for thousands and bills the government for the drug it already paid for
If Medicare actually paid $1721, what was the asking price?
I just won a Medicare appeal (denial of Vitamin D test) and am in the final stages of dealing with the Quest collection agency. Quest accepts $38.50 as the paid in full price for this test; $75 for the "direct purchase by consumer", and $319 if it is submitted to insurance and denied.
At least when the people call trying to get me to read my Medicare number, I know up front that I am dealing with a thief and a scam artist.
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To be clear, no recipient is being charged for Evusheld because we have already paid for it via our tax dollars. What we are being charged for is the "administration fee", and that varies greatly from provider to provider.
Whether or not your insurance will pay for that administration fee often depends upon whether or not you had to go out of network to get the injection(s).
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The cost as reported in the claim that I saw reflects using the Emergency Department. That's an expensive venue but that wasn't my choice. I took up a bed for several hours while they watched for possible reactions. Perhaps the clinic would be a less expensive environment. However, for me, that's an all day affair and I'm glad it didn't come to that.
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I confess that I've never heard of Evusheld being given on an emergent basis. Why were you sent to an emergency department to receive Evusheld? That's very unusual. I would have thought that a hospital that had an emergency department might have a clinic in which vaccinations and Evusheld are given. I'm just glad you were able to get it and that Medicare paid for your emergency room use.
Those of us not on Medicare are having a very different experience, especially those of us who have to go "out of network" to get it.
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When I went to the COVID Therapeutics website, the community hospital was listed as having Evusheld. So when I called to get the info, that's where they wanted me to have it administered. I was surprised but just followed the directions. It could be because serious allergic reactions are a possibility and the environments where that can be treated in a timely manner might be limited but I'm just guessing. My PCP was fine was giving me the script but neither she nor the hospital suggested the PCP administer it. My friend who referred me to our local hospital also received Evusheld in the ER.
I do not take how fortunate I am, in so many ways, for granted. The inequities in the US healthcare system are astounding and unnecessary, costing more in the long run in dollars, lives and quality of life, but there seems to be no logic anywhere. It's very wrong, very persistent and very discouraging.
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Well, that's fair enough. Maybe a community hospital doesn't have the space for a separate Evusheld clinic. As long as you got it, that's the important thing. Now the question turns to "What happens next?" The current batch of Evusheld has an expiration date of end of July, and there is not yet any data/information to indicate when/if a second round will be necessary/accessible. That will be up to the Senate, I guess.
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My daughter showed no detectable antibodies after 3 Pfizer shots so am grateful for the Evusheld, which gave her some. But she is still being cautious and probably will get a 4th shot and later, more Evusheld, when available, as her transplant hospital recommends following CDC guidelines “COVID-19 Vaccines for Moderately to Severely Immunocompromised People” https://www.cdc.gov/.../vaccines/recommendations/immuno.html
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ID MD recommended I get a 5th vaccine 4 months after the 4th, followed by Evusheld 2 weeks later.
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Daughter Jenna had her Evusheld in March and the Johns Hopkins study checked her antibodies at 30 days and just now at 3 months, I look forward to see if she still has some. Getting 4th covid vaccine next week. She never got antibodies from the prior 3 shots but her doctor says no harm in getting another, and it might help somewhat?
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Really interesting how even the younger folk are receiving the Evusheld. That's a big win for everyone who has received it!
I learned that I am Tier 3 to receive out of 3 tiers. Priority tier to receive Evusheld are lung transplant patients. Totally understandable. Second tier includes those 65+. Third tier is those under 65.
I'll be waiting until the cows come home. I am looking to schedule my own antibody tests because I would like to have an idea where I stand.
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In a twist of fate, I received the two doses of Evusheld at my transplant hospital.
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Just some questions after receiving Evusheld.
1. Should I still pursue antibody testing now? This has to be arranged privately as in I will have to pay out of pocket.
2. With Evusheld and the fifth shot of Pfizer (or Moderna), is it safer to take a short vacation?
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My transplant center (Boston area) makes it easy for xplantees to get Evusheld, but they run you through an infectiou$ di$ea$e $peciali$t instead of the nephrologist to have it prescribed. The ID doc was excellent - told me I had to listen to him explain the results of fide effects hinted at by some studies and what an EUA was as part of informed consent.
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What is an EUA?
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Hi Cassandra
Emergency Use Authorization :)
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Thanx Xplantdad :2thumbsup;
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The Up the Antibodies campaign seems to be in full swing in the land of the free.
This ad was on television during one of the news hour shows. I wasn't really paying attention until the end and had a wha? whaaaa? moment at the target base: https://youtu.be/57bkLxpJcT4
Long acting monoclonal antibodies, woo yeah.
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The Up the Antibodies campaign seems to be in full swing in the land of the free.
This ad was on television during one of the news hour shows. I wasn't really paying attention until the end and had a wha? whaaaa? moment at the target base: https://youtu.be/57bkLxpJcT4
Long acting monoclonal antibodies, woo yeah.
That's a good one, thanks for sharing. Since I don't watch TV I don't see the occasional ok ad like that. (I only stream specific shows and movies)
Noted: "AstaraZeneca is thankful for the support of the patient advocacy community."
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For the life of me, I cannot understand why they don't just use the name "Evusheld". If you see this video and are urged to speak to your doctor, what exactly are you going to ask for, keeping in mind that most GP's and PCP's will probably have no idea what what you're talking about. Most people are not "medically literate" like we are, so they're gonna ask for something like "monblahsomething antiboblahblahs because I saw a video with Jeff Bridges saying something about cancer and wanting to go to his daughter's wedding."
I think this is a missed opportunity. It's like getting to 4th and inches and your coach calls a play with the QB in the shotgun.
Also, they need to define "long lasting" because this is currently a set of two injections that is recommended to be repeated every two months (as long as there is enough money for it and your insurance approves it.) There should also be a warning about administration fees.
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I agree in that it was a missed opportunity.
When I realized that this campaign was directed to the immunocompromised and "upping the antibodies", I followed the message but was kinda lost at the how. I checked out the affiliated website because I wanted to see if there was anything "new" or they would call out Evusheld by name. No such luck.
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Great commercial but I agree on how confusing it is. I'm pretty confused myself. My clinic told me I could repeat Evusheld this month, 6 months after my first (although I'm on my own to track it down and get it). I thought I just read that it wasn't very effective on the latest variants. I've been procrastinating.
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Great commercial but I agree on how confusing it is. I'm pretty confused myself. My clinic told me I could repeat Evusheld this month, 6 months after my first (although I'm on my own to track it down and get it). I thought I just read that it wasn't very effective on the latest variants. I've been procrastinating.
Evusheld probably still works against Omicron BA.5, and that is 90% of the covid infections now. BA4.6 is <10%
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Thanks for that info! This thread got me moving. I'll make the appointment once I get proof of a negative covid test next week.
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Evusheld has now been approved as a treatment of COVID in immunocompromised people. So, not just about protection, but a treatment if you get sick. In Canada, that is.
https://www.cbc.ca/news/health/evusheld-treatment-covid-1.6621272
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I hade my second Evushield last month. My local kidney doctor said I didn't need any more covid vaccines. Then I saw my transplant doctor last week and she said I should still continue on with covid vaccines. I asked her about risks and she said that it was highly unlikely but in some cases it was causing kidney rejection, I am assuming only for transplanted patients. Anyone else hear this? That's all it took for me to know I was not having any more covid vaccines. I try to be very careful when out and about.
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I hade my second Evushield last month. My local kidney doctor said I didn't need any more covid vaccines. Then I saw my transplant doctor last week and she said I should still continue on with covid vaccines. I asked her about risks and she said that it was highly unlikely but in some cases it was causing kidney rejection, I am assuming only for transplanted patients. Anyone else hear this? That's all it took for me to know I was not having any more covid vaccines. I try to be very careful when out and about.
I am stunned and horrified that you've been told this by the very people who are supposed to be caring for you.
Have you had to bi-valent booster? If you have, then no, you don't need more vaccines because none are yet authorized.
Look to see if the BQ variants are dominant in your area. They now account for over 50 percent of Covid infections in the country which, by definition, makes them the dominant strains. BQ variants are evasive from Evusheld and bebtelovimab. Your Evusheld is now most likely useless, and the FDA has pulled the EUA from beb, meaning you now have one fewer treatment option.
I have attended MANY CDC/ASPR webinars on the subject of Covid and the immunocompromised, and not once have I heard of any study that links vaccination to solid organ rejection. I know of no specialist in the field that is warning his/her patients not to get boosted, especially now that Evusheld and beb are no longer tools at our disposal.
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Today I read an article saying that:
"Thousands of triple vaccinated Britons reporting same Covid symptom - 54% of all cases and experts explain that with each new Covid variant the proportion of people reporting symptoms increases and symptoms affect their everyday activities “a lot”, new research has found. The four main “cold-like” symptoms affecting include sneezing and a hoarse voice, sore throat, runny nose, blocked nose, persistent cough and headache."
... What to make of this? It even seems that information about Covid and how to go about Covid-vaccination seems really difficult to come by, especially about some (permanent?) side-effects of it and, last but not least, information about Covid itself and what to do about it and how to go about Covid-vaccination seems to get a bit conflicting with some other information about it, leaving the reader unclear about what to do, how to go about it and what is going on ... ?
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In terms of organ rejection after COVID-19 vaccination, there is an especially small chance of it occurring, and in this case, the medical team threw the kitchen sink at the issue.
Even in the patient that experienced the unfortunate event, the conclusion of the paper still reads: By comparison, risk of COVID-19–related morbidity and mortality is much greater compared with the risk of vaccination-related allograft rejection.
See case study here: https://journals.lww.com/transplantationdirect/fulltext/2022/02000/acute_kidney_allograft_rejection_following.8.aspx
Second paper shares: A range of solid organ rejections post-SARS-CoV-2 vaccination or following COVID-19 infection may occur at an extremely rare rate and is likely to be immune-mediated. [...] The number of reported cases is relatively small in relation to the hundreds of millions of vaccinations that have occurred, and the protective benefits offered by SARS-CoV-2 vaccination far outweigh the risks.
See paper here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9412452/
Another case study and in the conclusion: Case reports of acute allograft rejection after vaccination against SARS-CoV-2 can help us stratify the risk group of patients with hyperimmune reactions after SARS-CoV-2 vaccines (mainly young patients with autoimmune diseases) but it is possible that such a group of patients may develop acute allograft rejection upon COVID-19 re-infection, especially in those with a mild form of primary COVID-19 infection. Therefore, it is worth considering monitoring graft function after vaccination against COVID-19 by examination of serum creatinine, proteinuria, and dnDSA.
See case study here: https://www.nature.com/articles/s41541-022-00445-5
I've had 5 shots and my egfr function has remained consistently over 110 with creatinine staying the same. So yeah, rejection happens rarely, but the rate of COVID spread has a bigger opportunity of kicking us on our behind for awhile. It's a rough virus to get over. When I had COVID and they lowered my immunosuppression (now known as a bad move...but everyone was still learning), my creatinine and egfr was checked once a week. And it was all good each time.