Curious if your transplant clinic or nephrologist contacted you about getting the covid vaccine. My spouse was told to get the Pfizer if he could get his hands on it where we live and he did and had both shots without problems. Mid March 2021 a study from John Hopkins medicine came out showing volunteers who were whole organ transplant recepients of several years after their first shot of Pfizer or Moderna most of the people int he study made few if any antibodies for covid19 protection. The study is ongoing to see what happens after the 2nd shot. The study noted two antirejection medications that cause 5 times less likely for the body to make antibodies enough for protection and my spouse takes one of these antirejection meds (mycophenolate called "Cellcept"). My heart sank after reading this. Surprised his kidney doctors did not alert him to this study, but no one did. I found it by accident seeking information on something else. Did you know about this?
John Hopkins Medicine organ transplant/c... - Kidney Transplant
John Hopkins Medicine organ transplant/covid vaccine study results in mid March2021:few if any antibodies made
Hi. I received the two Moderna vaccines and my doctor asked me to get a specific spike protein antibody test to see if it worked. I received the results today and you are right, I am not vaccinated according to the test. I also take Cellcept. My brother also had a transplant and his doctor knew nothing of the John Hopkins study and I had to be the bearer of bad news. I am very bummed today. I think either a booster or a certain other protocol is the next step. You have to have .08 of antibodies to be vaccinated and mine was less than .04. The good news is that I read four days ago in CDC news that it is safe to be around other vaccinated people and they now believe it cannot be carried by a vaccinated person. If this is true, my summer will be a lot better. I just got a new kidney and double nephrectomy 16 months ago. I am feeling much better now that they lowered my Tacrolimus/Prograf. What a roller coaster this year has been.
My spouse of over 40 yrs and I have been living in a bubble as much as possible for over a year due to covid and the year prior was almost that bad. I keep waiting to get more information from the CDC to know if I can bring the virus home to my spouse if I return to work in my office at the college or can I have no symptoms and have covid and bring it home to him. These worry me. It is just us 2 living our lives together through all kinds of medical problems and I am the caregiver when needed and glad to do so. We are fully vaccinated now and we don't plan ahead for the past two years to do anything. The year after his transplant Nov 2018 he had so many major transplant problems, blood chemistry problems and the end result is he feels worse now after two years post transplant than before the surgery. He is in a positive mood, but the fatigue and lack of stamina to do hobbies he had many of is not there anymore. Do you have that too? He is only 61. We are both so disappointed with the outcome of life for him to "go and do" which he is not able to. His brother also had PKD and his live donated kidney from his wife lasted 17 yrs then he was on dialysis for another reason and died two years ago. He did not have any of the same issues my spouse has had. I cannot find anyone to relate to.
Hi Gardner - NY, I too became aware of these studies showing decreased immune response to the vaccines on my own, without my medical team alerting me. Like you, I'm a bit surprised at the lack of notification. I was set to fly to Hawaii last Thursday, the trip planned months ago after my wife and I both got 2 doses of the vaccine. I decided at the last minute to cancel the trip because I just didn't know how to determine my immune status given this emerging data. I didn't want to roll the dice exposing myself to the relative high risk of airports and the confined shared space during the flight. Unfortunately my nephrologist offered little advice, other than to wear a mask on the plane (!) if I decided to go. (not much help, because masks are mandatory on Alaska Airlines anyway)
I've been following the emerging research on kidney transplant recipients' response to the vaccines on this website - nephjc.com/news/covid-vaccine, which is nicely updated every few days. I also saw some clinical data reported by the Mayo Clinic yesterday, showing vaccinated transplant patients with Covid infections serious enough to be hospitalized. Here's link - onlinelibrary.wiley.com/doi...
Overall I'm optimistic, figuring this will work itself out over time. Maybe a third shot will be needed for transplant patients like me. Or maybe taking one of the vaccines that uses a different route to present the Covid markers to the immune system. My reading suggests the mRNA vaccines ironically might NOT be best for kidney transplant patients like me.
I love science, and I trust this will get figured out. Just hard in the short term to go from the feeling of freedom post vaccine to now return to the relative restrictions and cautions I've been following for the last year. As others get vaccinated the incidence of Covid in our communities will go down and that will make things safer for those of us with impaired immunes systems. Still, things could be worse! I'm 8 years post transplant and so grateful for the gift my sister gave me. Life is good, even if I don't get to go to Hawaii!
I'd love to hear from others on this board who are trying to figure out how to navigate this emerging uncertainty.
Bob
HI Morello, I hope you do travel to Hawaii soon. Thanks for sharing all you did about the vaccines and antibody production problems . So much more to learn about covid19, mutations of the virus, how vaccinated people can spread covid to others (that is my biggest fear). We are fully vaccinated and I'm healthy and work full time at a college, but from home the past year plus, and he is retired. I would not be able to live with myself bringing this virus into our home. I am social and he is alot less, and that is very hard for me to be away from people, but his health is my big priority now. I wish after over two years my spouse had energy to go do many past hobbies he did before, but he does not.
Bob- THANK YOU for the link to the nephjc website. I have been tracking the literature, but to have such a comprehensive and annotated site is wonderful.
I had posted a couple of months ago that I am in the Johns Hopkins study and negative for antibodies. Knowing there is more to the immune system than antibodies I had hoped for a cellular response, but the few studies to date report that most transplant recipients also do not generate T-cell responses to the vaccine. Perhaps we will need a higher dose, third shot, different vaccine platform, monoclonal antibodies...many possibilities. Meanwhile, I am remaining extremely cautious and grateful for my kidney. Immunosuppressants are powerful drugs; although they blocked my immune response to the vaccine, they are protecting my precious kidney donated to me by a compassionate friend. That is far more important.
Thanks for writing what you know about this topic so we all can learn.
There is no data to conclude what is a minimum level of spike proten antibody needed to have immunity yet. Remember our immune system does not rely ONLY on antibodies to fight off viruses. Another important factor to consider is how good your antibody assay is. Every research University is developing and testing using their own system. One's result may look very different if you get tested next day at another university.I have spike protein antibodies and I changed nothing in COVID prevention behaviors. I don't think being prematurely scared or worried is good for health. As long as you are careful and continue to stay diligent you will be fine. Your vaccine may just be doing its job better than you think.
Thanks for writing me back LisaSnow. The JOhn Hopkins study stated 2 specific antirejection meds that caused 5 times less ability for protective antibodies to form and my spouse with the kidney transplant is on one of them mentioned (brand name is Cellcept). I just keep waiting for more information to come out of the study after the volunteers antibodies are checked after their 2nd vaccine shot. Thanks
Dear Gardner-NY,
In answer, to your question, YES I Did know that some Anti-Rejection- Immune Suppressant Drugs- CAN reduce the efficacy of Covid Vaccines. I also know a few other 'things' too.... One- a Vaccinated Person has more protection than a Non-Vaccinated one. Two- the exact effect Varies, from person to person...Drug to Drug. Three- both Government, and the Medical Profession, are well aware of this.... and STILL Recommend vaccination. There is also, highly likely, to be a 'Booster' dose offered- to these Groups- in September.
I'm having MY second 'Jab' on Saturday.... and I may, very well, ask for an Anti-Body Test in a few weeks time.
AndrewT
Thanks for writing AndrewT. I truly wish you all the best.
Howdy...I'm not sure why this is a surprise to anyone. People with suppressed immune system, suppressed for whatever the reason, often do not get "robust" responses to many of the vaccinations — according to Dr. Fauci, at least.
Of course, transplant recipients have to be careful/vigilant for infection/disease even in the absence of COVID. As a transplant recipient, my father needed to be very careful, particularly during cold/flu season. He did get BK. He did get a rare form of skin cancer. Then you have the recipients, like my uncle, who throw caution to the wind. They travel, swim in fresh water, most likely polluted lakes, and meet with unvaccinated family member — all during COVID. Plus, the guy has aggressive form of prostate cancer.
My educated guess — and this is what my wife and I follow — is that transplant patients need to:
a) MASK UP, even in those situations we are nearly sure we are safe.
b) GET THE VACCINE regardless of the preliminary, limited data set.
c) LIMIT POSSIBLE EXPOSURE by limiting/eliminating risky behaviors. To be sure, scientist know how we contract this disease. We need to wait until their is more data as well as we have a sufficient level of herd immunity.
Sure, I would love to travel. Heck, I just miss going out for dinner with friends. Our last trip for wife and myself was in 2019 to Germany, Austria and Switzerland. Due to the virus, we will not be in Europe for quite a long time. Because of the stupidity of some people — particularly regarding their view of safety measures about COVID — I don't feel safe dining out at this time. But, I was blessed with a new kidney in September of 2020. I feel physically great — not so much emotionally — and will not let COVID ruin this blessing. My wife and I just have to take precautions.
Best,
Hello shadowfax001, thanks for writing. I guess everyone with a kidney transplant and their family members will all just continue to wait and see what the medical scientific community can do so people with transplants can live a fuller life while remaining vigilant against covid19 and other virus'.
Yes I already knew about this as came across already a few articles concerning about low to none being made after two doses.. as well as vaccinated transplanted patients have caught covid and hospitalized..etc. But, also, it could be different for every patient. I actually caught covid.. and all of my family members (8) who had it together was surprised to witness that I did the best out of them when we were all expecting me to get severely sick. It's different for everyone...
Hello Dna4christ, Thanks for responding. How long ago did you receive your kidney transplant? Do you now have stamina issues and fatigue most days ? Do you feel lousey most days due to meds you have to take? Just curious questions. Thanks I wish you good health.
Love your questions! My kidney transplant will be 10 years coming July 1st! I dont have any stamina or fatigue issues especially after I started a clean diet last year in April due to my creatinine increasing. Before then, I did feel dizzy occasionally, bloated.. tired (realized it was all from all you can eat korean bbq. Went quite often lol). Now, I feel awesome. Least of my worries. All good here! So much energy going on even with low blood level of 9.4. Recently started procrit to increase my anemia. I dont feel lousy or have much side effects from my drugs except bloating if I eat too much salt that day. 
it feels amazing!!
Thanks for sharing all this and wow, congratulations with 10 yrs post transplant. My spouse the first two months post transplant was doing ok, but for 12 months after: rejection "low grade", severe low hemoglobin, CMV virus, high white blood count and a few other issues and then during this he was a couch potato due to how he felt. He was diabetic before and took one shot a day at night of insulin, but now takes that same med and a different insulin before all meals. The problems of the first 12 months all went away though every 3 mths he is tested for CMV virus due to it can return, but he has no stamina or energy. He has fatigue all the time. I did my own research using my college library of medical journals online and found fatigue and dialysis or transplant is more common. His entire body has tremors even when he sleeps. It took 14 months to get his blood chemistry right and now it is. He is 2.5 yrs post transplant and feels worse now than before the transplant. He never was on dialysis. He is in a fairly good mood most of the time, which I am so grateful for. His brother also had PKD and his wife donated her organ to him 19 yrs ago. He died 2 yrs ago from a heart attack, but his issues post transplant were so different. We were hoping for so much more after his transplant challenges were resolved, but we are not seeing them. More energy would be great and not feeling lousey all the time. I am so glad you are doing so very well.
I'm so sorry to hear that. I was on dialysis for almost 7 years. Pd then hemodiaysis. When I received my transplant, I felt energetic from the start. I couldn't sleep and was super hyper until I guess everything went back to "normal" as in probably got used to it and adapted to the transplant. Then, my creatinine started creeping up slowly and they changed so many of my meds which gave me many different side effects- I guess the woes started 2 years after my transplant... took awhile for my creatinine to settle down and for me to get to know my body and levels well. For me, it seems diet plays a huge role which my transplant doctors kept denying me of my speculations. But it turned out that meat esp red meat is the culprit of my fatigue ..and salt intake as well as being hydrated with 2-3 liters of water.. which I finally took action after 9 years. Took me long enough but so glad it's working out. Maybe the meds aren't working for him just yet and might take a little more time to do well. I'm currently on prednisone 5mg and tacro 2mg. What about you guys??
Hello Dna4christ, Thanks for your caring spirit and giving me details on your journey. My spouse and I eat little meat in a day, but we are not vegetarians. He cooks most of our meals and they are mostly from "scratch" and he is focused on the dietary nutrition of every meal . Him being on insulin 4X a day also is in the forefront of his mind. his blood chemistry labs since late Jan2020 through now are good. For most of this timeframe they were done once a month. So this tells us his meds are at the right amounts. He was seeing his transplant team very often prior to covid and then every 2 months via phone calls with the blood work done beforehand, so they are watching things closely and feel he is in the right place in his 'chemistry'. From my medical journals/articles research using my college job library, I'm finding the Fatigue after transplant and years after too is common, like over 40% and not enough research has been done on this topic. Just about every study I read stated "we wish we had gathered statistics on x,yz, before and after transplant and years after". So there is no strong reason for 1-2 reasons why the fatigue lingers. He feels worse now than before his transplant. 90% of his hobbies he does not do anymore due to how he feels and tremors in his body 24/7. He inherited a type of tremor from his mom and even his surgeon noticed it and said "you know, that will worsen after being on Tacrolimus drug". His brother inherited the same PKD as my spouse and his brother's wife donated her kidney and it was viable 17 yrs then another medical problem caused him to lose the kidney's function and he had to go on at center dialysis and last 6 months at home dialysis and then he died of a heart attack. So everyone's journey is very different is all I am finding. I wish his transplant team had explained about the fatigue as a possible long-term side effect, it never was mentioned and at the time, I did not find anything about it in my research then. We are just unhappy about the outcome to be blunt. We are trying to make the best of life and covid looming around us and all that brings. I sincerely wish you all the best in your life.
I read this from the CDC... cdc.gov/coronavirus/2019-nc...
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