John Hopkins Webinar on transplant recipients and vaccines

Posted by bosco17 @bosco17, Mar 24 6:34am

They said after first shot 17 out of 800+patients had only a minimal antibody reaction .Also being on mycophelonate reduces effect of vaccines.WHATS GOING ON ??????

@nanmargaret

Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in the Johns Hopkins study.
I had a mysterious inflammation in my left jaw one week post vaccine #1! It was intensely painful with swelling, then resolved very quickly just before I saw my dentist. How strange, because I wondered if it could be related to the parotid gland just in front of the ear.
Hope you are having luck with your research, I gratefully received a young heart, but not a high-risk one.

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Welcome to our Connect group. Congratulations on your young heart.
Thanks for your response and I'm sorry you had a similar reaction to the vaccine. I have an MRI scheduled to look at the right side of my face a bit more. I still have some swelling but the pain is gone. My research is going well and I am actually also interviewing post TX folks who accepted non-increased risk donor hearts, in case you're interested in sharing your story. Maybe?

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@estrada53

Welcome to our Connect group. Congratulations on your young heart.
Thanks for your response and I'm sorry you had a similar reaction to the vaccine. I have an MRI scheduled to look at the right side of my face a bit more. I still have some swelling but the pain is gone. My research is going well and I am actually also interviewing post TX folks who accepted non-increased risk donor hearts, in case you're interested in sharing your story. Maybe?

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Thanks, I would like to hear more about it. Perhaps, you could private message me with information about yourself and your research.

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@contentandwell

@kedwards73 What I found confusing was that they had less than 80 on the same line as my results. I have done some research this morning though and I think that's just the format of their report, confusing as it is. The example I saw on their website had resulted in the 20s with the comment "high". Mine did not have that of course so I wonder just how much protection I have.

Has anyone heard when the Johns Hopkins Zoom will be, after they have deciphered the results when a person has had the second shot? I'm very interested in attending that. I am hoping that they will notify those of us who went to the first zoom. Also, does anyone know how to see the recording of that zoom?
JK

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I’m in the study and will post as soon as I’m notified.

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@nanmargaret

Hi estrada53, just joined this forum today. I'm a heart tx recipient and a participant in the Johns Hopkins study.
I had a mysterious inflammation in my left jaw one week post vaccine #1! It was intensely painful with swelling, then resolved very quickly just before I saw my dentist. How strange, because I wondered if it could be related to the parotid gland just in front of the ear.
Hope you are having luck with your research, I gratefully received a young heart, but not a high-risk one.

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@nanmargaret, Welcome to Connect.
Here is a link to the discussion where @estrada53 presents her story and her research project.

Looking to interview transplant patients: Increased Risk Donor Hearts
https://connect.mayoclinic.org/discussion/increased-risk-donor-hearts-risk-and-opportunity/

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Antibody Response to 2-Dose SARS-CoV-2 mRNA Vaccine Series in Solid Organ Transplant Recipients. John Hopkins Study
https://jamanetwork.com/journals/jama/fullarticle/2779852
Their conclusion "Although this study demonstrates an improvement in antispike antibody responses in transplant recipients after dose 2 compared with dose 1, these data suggest that a substantial proportion of transplant recipients likely remain at risk for COVID-19 after 2 doses of mRNA vaccine. Future studies should address interventions to improve vaccine responses in this population, including additional booster doses or immunosuppression modulation."

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@terry14

Antibody Response to 2-Dose SARS-CoV-2 mRNA Vaccine Series in Solid Organ Transplant Recipients. John Hopkins Study
https://jamanetwork.com/journals/jama/fullarticle/2779852
Their conclusion "Although this study demonstrates an improvement in antispike antibody responses in transplant recipients after dose 2 compared with dose 1, these data suggest that a substantial proportion of transplant recipients likely remain at risk for COVID-19 after 2 doses of mRNA vaccine. Future studies should address interventions to improve vaccine responses in this population, including additional booster doses or immunosuppression modulation."

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Will be interesting to see results as time passes. Guess our hope is in “herd immunity”…

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@athenalee

Will be interesting to see results as time passes. Guess our hope is in “herd immunity”…

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Or what my doctors say – "community immunity" 🙂

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@terry14

Antibody Response to 2-Dose SARS-CoV-2 mRNA Vaccine Series in Solid Organ Transplant Recipients. John Hopkins Study
https://jamanetwork.com/journals/jama/fullarticle/2779852
Their conclusion "Although this study demonstrates an improvement in antispike antibody responses in transplant recipients after dose 2 compared with dose 1, these data suggest that a substantial proportion of transplant recipients likely remain at risk for COVID-19 after 2 doses of mRNA vaccine. Future studies should address interventions to improve vaccine responses in this population, including additional booster doses or immunosuppression modulation."

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Thanks for posting the "real" link. We still have work to do regarding the vaccines and must continue to protect ourselves. But this time others will not be protecting themselves at our same level. Others may think it's okay not to mask up and social distance, so it's a bit of a balancing act for us! So happy to have this website to share this info!

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Very helpful information, which concerns me.that im.not hearing more from.Mayo itself as to some of these studies. I will.admit I keep hearing the same mantra, "We are following the CDC and WHO recommendations" which is not telling us much. I have always respected the opinion of my Doctors directly but lately it seems they are just quoting the mainstream media as to what to say. Im told we should not listen to erroneous sources but when information is wanted and your primary sources are quiet it makes it hard to not listin to what appears to be good information for people who are some bodies Doctors talk about all aspects of the information available. I'm really having a hard time dealing with the lack of data from Mayo Doctors these days. I just sent a request to my team about getting an antibody test since I did come in contact with individuals who had confirmed covid but after the fact. I did not have any symptoms but based on some of the information out there I could have been asymptomatic and not know it. The response I got was a basic We are following CDC and WHO recommendations and are suggesting all patients follow those guidelines. Which really upset me since I've come to relay on the opinions of my Mayo Doctors not what CDC says. What are we paying them for? It's really got me concerned as to what is driving the current campaign about vaccinations. Oh well I'll just keep to the original advice I received during my transplant. Mask up during virus seasons, wash my hands and take precautions. Until I feel the information im getting is from my doctors and not from the government.

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@rosemarya

@nanmargaret, Welcome to Connect.
Here is a link to the discussion where @estrada53 presents her story and her research project.

Looking to interview transplant patients: Increased Risk Donor Hearts
https://connect.mayoclinic.org/discussion/increased-risk-donor-hearts-risk-and-opportunity/

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Thank you, Rosemary

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@danab

Very helpful information, which concerns me.that im.not hearing more from.Mayo itself as to some of these studies. I will.admit I keep hearing the same mantra, "We are following the CDC and WHO recommendations" which is not telling us much. I have always respected the opinion of my Doctors directly but lately it seems they are just quoting the mainstream media as to what to say. Im told we should not listen to erroneous sources but when information is wanted and your primary sources are quiet it makes it hard to not listin to what appears to be good information for people who are some bodies Doctors talk about all aspects of the information available. I'm really having a hard time dealing with the lack of data from Mayo Doctors these days. I just sent a request to my team about getting an antibody test since I did come in contact with individuals who had confirmed covid but after the fact. I did not have any symptoms but based on some of the information out there I could have been asymptomatic and not know it. The response I got was a basic We are following CDC and WHO recommendations and are suggesting all patients follow those guidelines. Which really upset me since I've come to relay on the opinions of my Mayo Doctors not what CDC says. What are we paying them for? It's really got me concerned as to what is driving the current campaign about vaccinations. Oh well I'll just keep to the original advice I received during my transplant. Mask up during virus seasons, wash my hands and take precautions. Until I feel the information im getting is from my doctors and not from the government.

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@danab– I hear you, my friend. I think that the problem is more that your doctors, whether Mayo doctors or a clinic doctor somewhere in the deep woods, just can't answer your questions because they simply don't know. Their egos won't let them admit it. Some doctors have huge egos as you know. It's so frustrating not to have answers to matters of such importance. I know that you have struggled with this a lot so the time might be to just go ahead and decide, one way or the other until there are more answers and answers that make your doctors appear smart!

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@danab

Very helpful information, which concerns me.that im.not hearing more from.Mayo itself as to some of these studies. I will.admit I keep hearing the same mantra, "We are following the CDC and WHO recommendations" which is not telling us much. I have always respected the opinion of my Doctors directly but lately it seems they are just quoting the mainstream media as to what to say. Im told we should not listen to erroneous sources but when information is wanted and your primary sources are quiet it makes it hard to not listin to what appears to be good information for people who are some bodies Doctors talk about all aspects of the information available. I'm really having a hard time dealing with the lack of data from Mayo Doctors these days. I just sent a request to my team about getting an antibody test since I did come in contact with individuals who had confirmed covid but after the fact. I did not have any symptoms but based on some of the information out there I could have been asymptomatic and not know it. The response I got was a basic We are following CDC and WHO recommendations and are suggesting all patients follow those guidelines. Which really upset me since I've come to relay on the opinions of my Mayo Doctors not what CDC says. What are we paying them for? It's really got me concerned as to what is driving the current campaign about vaccinations. Oh well I'll just keep to the original advice I received during my transplant. Mask up during virus seasons, wash my hands and take precautions. Until I feel the information im getting is from my doctors and not from the government.

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The drive for vaccination is probably the only thing that will eventually bring protection for us transplant patients. We were told that it would be likely our immunosuppressed systems would not develop the antibodies from the vaccine to provide full protection. And, the research certainly proves that. So, we are going to have to keep being masked and cautious until more people are vaccinated and the virus continues to wane.

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