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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 ??????
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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I am patiently awaiting further research to give some answers.
In the meantime-
I have already decided to continue being extra cautious because, even before this pandemic and restrictions, that is what I was accustomed to doing. Since before-my-transplant, I was informed of my higher risk immunosuppressed status and that I would need to maintain my safe distance, hand washing, and to avoid shaking hands, especially during flu season. And now I plan to continue wearing my mask in public, too.
-To any Newer Transplant Recipients and families and friends, Here is a discussion that was active before the pandemic. I invite you to discover tips where members discuss and share: hand washing and germ prevention, eating out; attending public events; daily medicine reminder……Practical living ideas, and handshaking alternatives.
Living Life after your Transplant
Agreed. I was diagnosed with both my autoimmune disease that caused Stage 3 liver cirrhosis in the summer of 2019. That October, I had internal bleeding and TIPS. Recovered from that and along comes Covid and continued health decline. I had my transplant last August, so have been “masked, sanitized, largely isolated, and cautious” for over a year now. I’m sure I’ll have to remain so for awhile and possibly indefinitely during flu season. But in Vermont 40% of adults are fully Covid vaccinated and more than 60% have their first shot. Spring is here, so I remain vigilant, but certainly more hopeful!
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.
For those of you that are Kidney recipients from Florida, we have a monthly Education/Support group on Zoom for our patients and Dr Martin Mai has been providing updates for our patients including studies that are being completed with the kidney transplant patients here at Mayo. I would encourage any of our patients to attend. For the other Mayo sites, you could request that your Social Workers have a physician attend and provide an update at their meetings.
@jerrynord, @kedwards73, @livertrex, @contentandwell, @luckonetj, @nanmargaret, @terry14, @pdennis,
Here is an update from @zon that he posted in the Transplant Discussion: How much covid protection are transplant recipients really getting. NOTE – I did include the updated time correction.
The transplant team at Johns Hopkins is "planning on broadcasting a 1-hour live webinar on Friday, May 14, 2021 at 2:00PM EST to share our findings with you and answer your questions. If you are unable to view the live webcast, please do not worry. The webcast will be recorded and we will share a link of the recording with everyone."
Please register here: https://jhjhm.zoom.us/webinar/register/WN_W2-T8NbVTDWMxEMG2aP3aQ
@rosemarya I haven't had time to get to Mayo recently but I just made what is only going to be a quick stop, but I'm so glad I did.
Thank you for posting this. I have signed up and will be there tomorrow.
Are there studies being done on liver transplant patients?
@bosco17, Yesterday, I viewed the Johns Hopkins Webinar, and they said that information about specific transplanted organs is being worked on now as more and more data is collected and studied. It is still early in the process, and there are other variables such as elapsed time since transplant, medications, specific organ or multiple organ transplant, underlying conditions…to be considered.
If you missed the Webinar, you can see what attendees are sharing here:
Yes I saw it and it was just as I warned when I started my blog. Im 13years post liver tx on 500mg cellcept 2x daily and Im not vaccinated as I want to wait until John Hopkins issues more guidance.I really believe that our treatment will be with theraputics eg: monoclonal antibodies The CDC really doesnt care about our group with their reckless actions . Why isnt the Mayo Clinic giving us more guidance???????????????????????????????????????????????
I did get the Moderna 2 vaccines months ago. I do not have antibodies and agree that (from the webinar) it may be that a monoclonal antibody infusions may be the way to build some immunity. Johns Hopkins is testing that treatment. Any info from the Mayo is coming out of their Jacksonville location, however that seems very limited. I also wish the MAYO would provide patients an update.
You're so right, @rosemarya. Information about specific transplanted organs with respect to COVID, the vaccine and post-infection recovery is being worked on now as more and more data is collected and studied.
A small study from Mayo Clinic researchers raises the concern that some transplant patients may have a limited immune response after being vaccinated for COVID-19 with an mRNA vaccine. Their findings are published as a letter to the editor in the American Journal of Transplantation. Read more here: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-question-effectiveness-of-mrna-covid-19-vaccines-for-solid-organ-transplant-patients/
Mayo Clinic's COVID research related to transplant recipient continues. Patients will be updated. You can also follow updates on Mayo Clinic News Network https://newsnetwork.mayoclinic.org/
Thank.You and just like my original instructions from transplant 3.5 years ago im so used to the Mask and other protocols I probably would feel weird to take the mask off anyway. I always have looked at the transplant as a gift to extend my life and thank God for it. I guess when you have faced death not much is worse than that anyway. Every day is a gift hence is why we call it the present.
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