Transplant: Third dose, no antibodies: How are you staying safe?

Posted by hello1234 @hello1234, Sep 4 10:17am

Hi all,
I am a kidney transplant patient. I took the third dose of Moderna and still no antibodies. I live in Florida, the epicenter of disease. Because of the low vaccination rates along with the the highly transmissible Delta variant, I am living in a bubble. (If you get sick in my county, there are no beds available). I wanted to reach out to find out what kind of activities other people in this situation are doing. Are you having dinner with your fully vaccinated school teacher sister-in-law at her home? Are you having lunch with your parents at their apartment? Going to get a haircut with an N95?
Also, have you talked to your doctor or read about possible solutions for us in the future? I read that Pfizer has an antiviral pill in trial as a possible treatment after you become infected. Monoclonal antibodies infusions I think only last for 30 days of protection and we would need another infusion. Has anyone heard anything from their doctors or read something that offers hope?
Thanks everyone!! 🙂

@hello1234, remember, it’s not just about the antibodies as to whether we have some immunity.

This is a good discussion I heard the other day – Antibody Tests Should Not Be Your Go-To For Checking COVID Immunity
https://www.npr.org/sections/health-shots/2021/08/28/1031287076/antibody-tests-should-not-be-your-go-to-for-checking-covid-immunity
Also, remember, are bodies aren’t necessarily supposed to develop immune responses. If we had strong immune systems, we could very well lose our transplanted organ. And, personally, I’ve grown rather fond of my liver! So, being cautious, masked, etc. is a fact of life even during normal cold and flu seasons.

I’d be vary cautious of trying anything like monoclonal antibody infusions until there is more research as to what these treatments may do to transplant recipients. Certainly talking with your transplant team is the place to start…along with stocking up on a range of attractive masks 😷 to go with your Florida beach attire!

I’m going to outdoor events, fully masked. I will not eat at an indoor restaurant. All places I go into require masks, there are very few where I live that don’t. I have tickets to a dance concert, vaccinations or negative Covid test are required for entrance, as are masks.

REPLY
@athenalee

@hello1234, remember, it’s not just about the antibodies as to whether we have some immunity.

This is a good discussion I heard the other day – Antibody Tests Should Not Be Your Go-To For Checking COVID Immunity
https://www.npr.org/sections/health-shots/2021/08/28/1031287076/antibody-tests-should-not-be-your-go-to-for-checking-covid-immunity
Also, remember, are bodies aren’t necessarily supposed to develop immune responses. If we had strong immune systems, we could very well lose our transplanted organ. And, personally, I’ve grown rather fond of my liver! So, being cautious, masked, etc. is a fact of life even during normal cold and flu seasons.

I’d be vary cautious of trying anything like monoclonal antibody infusions until there is more research as to what these treatments may do to transplant recipients. Certainly talking with your transplant team is the place to start…along with stocking up on a range of attractive masks 😷 to go with your Florida beach attire!

I’m going to outdoor events, fully masked. I will not eat at an indoor restaurant. All places I go into require masks, there are very few where I live that don’t. I have tickets to a dance concert, vaccinations or negative Covid test are required for entrance, as are masks.

Jump to this post

Thank you @athenalee for always putting a smile on my face!. (I loved your suggestion to buy a variety of masks to match my beach attire!). A fun dance concert with required vaccinations and negative covid tests sounds awesome 🙂 I may have to think about moving to Vermont!! Also, thank you for sending me the article about antibodies and covid immunity. I can always count on you to be up on the latest scoop! Love to you.

REPLY
@hello1234

Thank you @athenalee for always putting a smile on my face!. (I loved your suggestion to buy a variety of masks to match my beach attire!). A fun dance concert with required vaccinations and negative covid tests sounds awesome 🙂 I may have to think about moving to Vermont!! Also, thank you for sending me the article about antibodies and covid immunity. I can always count on you to be up on the latest scoop! Love to you.

Jump to this post

You’re welcome to come visit anytime…although I wouldn’t recommend the winter. I’m not from here and I definitely don’t like snow. Spring, fall, and summer are fine though. Funny, I was planning on spending a few weeks this winter at a friend’s place in Gainesville. But, I’m thinking that’s going to be put off.

Stay safe! 🤗

REPLY

Hi! I’m doing my best to try to be safe by wearing an N95 mask whenever I’m near anyone except my husband. If I need to go into a store, which I try to avoid, I’m in and out like a ninja. No hanging around and I stay away from everyone I can. I no longer see my kids/grandchildren unless we are outside and distanced. Four of my extended, fully vaccinated, family members have gotten COVID, so, no, I don’t think a fully vaccinated person is safe for me to be around.
I did receive a letter from my Mayo transplant center stating that monoclonal antibodies are recommended if I should contract the virus.
We have a home in Florida that we haven’t been to since March 2020 and are hoping we can get back to this winter. I’m not sure how we could do that, but we’re hoping to do it! Hope they clean up their act!

REPLY
@mollyv

Hi! I’m doing my best to try to be safe by wearing an N95 mask whenever I’m near anyone except my husband. If I need to go into a store, which I try to avoid, I’m in and out like a ninja. No hanging around and I stay away from everyone I can. I no longer see my kids/grandchildren unless we are outside and distanced. Four of my extended, fully vaccinated, family members have gotten COVID, so, no, I don’t think a fully vaccinated person is safe for me to be around.
I did receive a letter from my Mayo transplant center stating that monoclonal antibodies are recommended if I should contract the virus.
We have a home in Florida that we haven’t been to since March 2020 and are hoping we can get back to this winter. I’m not sure how we could do that, but we’re hoping to do it! Hope they clean up their act!

Jump to this post

There are so many of us living just like you! Your story could be mine. Always masking out in public, brushed up on Ninja skills for avoiding and deflecting viruses and any illness really. It gets tedious but it’s what we do to survive.
My husband and I are facing the same dilemma for heading to FL. We own a place there too and haven’t gotten to go since Feb/Mar 2020. We returned back home one week before Covid really launched itself so that was good timing. We were hoping to make up for lost time this year and go down in late October until the holidays, then return to FL mid January to March. But wow, it is so sketchy down there! I’m really flabbergasted by lack of respect and the selfishness for others when simply wearing a mask would cut down drastically on all the transmission of the disease.

REPLY
@loribmt

There are so many of us living just like you! Your story could be mine. Always masking out in public, brushed up on Ninja skills for avoiding and deflecting viruses and any illness really. It gets tedious but it’s what we do to survive.
My husband and I are facing the same dilemma for heading to FL. We own a place there too and haven’t gotten to go since Feb/Mar 2020. We returned back home one week before Covid really launched itself so that was good timing. We were hoping to make up for lost time this year and go down in late October until the holidays, then return to FL mid January to March. But wow, it is so sketchy down there! I’m really flabbergasted by lack of respect and the selfishness for others when simply wearing a mask would cut down drastically on all the transmission of the disease.

Jump to this post

Hi @athenalee @mollyv @loribmt my Mayo Connect friends! Thank you so much for responding with how you are functioning during Covid-19. It's always comforting to know you are not alone. I am doing the exact same process. I wear my N95 when I need to go out, but I avoid going out. I "ninja" too!!! I never thought of it that way, but that's exactly what I do in a store… I love that expression (Ninja!)
I think everyone can come to Florida in the winter as long as you continue to be super careful and stay home, enjoy your backyard. I have my food delivered to my house. In our supermarkets, the workers are told to wear masks, but the customers are all walking around unmasked (and most likely unvaccinated, since our vaccination rate is low). Matter of fact, I have everything delivered. Costco, Publix, Amazon, etc. At this point, I avoid most face to face encounters.
(And @mollyv thank you so much for letting me know that monoclonal antibodies are endorsed by your Mayo transplant team if you encounter the infection, that's really good to know.)
Hey everyone, do you think things will be better under control by Spring 2022 as Dr Fauci projected or longer?

REPLY
@mollyv

Hi! I’m doing my best to try to be safe by wearing an N95 mask whenever I’m near anyone except my husband. If I need to go into a store, which I try to avoid, I’m in and out like a ninja. No hanging around and I stay away from everyone I can. I no longer see my kids/grandchildren unless we are outside and distanced. Four of my extended, fully vaccinated, family members have gotten COVID, so, no, I don’t think a fully vaccinated person is safe for me to be around.
I did receive a letter from my Mayo transplant center stating that monoclonal antibodies are recommended if I should contract the virus.
We have a home in Florida that we haven’t been to since March 2020 and are hoping we can get back to this winter. I’m not sure how we could do that, but we’re hoping to do it! Hope they clean up their act!

Jump to this post

Hello, I appreciate your ninja analogy…so true unfortunately.

I’m wondering if you would feel comfortable sharing your letter from Mayo recommending monoclonal antibodies should a transplant recipient get Covid.

I’ve reviewed the advisory on REGEN-COV (casirivimab and imdevimab) which recommends people who are immunosuppressed or on immunosuppressive medication not receive monoclonal antibodies.

Thank you.

REPLY
@athenalee

Hello, I appreciate your ninja analogy…so true unfortunately.

I’m wondering if you would feel comfortable sharing your letter from Mayo recommending monoclonal antibodies should a transplant recipient get Covid.

I’ve reviewed the advisory on REGEN-COV (casirivimab and imdevimab) which recommends people who are immunosuppressed or on immunosuppressive medication not receive monoclonal antibodies.

Thank you.

Jump to this post

I will share my Mayo letter about monoclonal antibodies.

Dear Mayo Clinic Transplant Patient,

As COVID-19 continues to circulate around our communities, we want to send a reminder to continue to practice social distancing, avoid crowded spaces, and to wear masks or face coverings.

With a recent Food and Drug Administration Emergency Use Authorization, we would like to inform you of a new treatment that may be available to you in case of an exposure to a known COVID-19 positive individual. This monoclonal antibody known as REGEN-COV is to be administered as soon as possible after an exposure to COVID-19 individual. If you have an exposure to someone with COVID-19, please notify your transplant team as soon as possible, so that they can refer you to the COVID-19 treatment team to review if you qualify for this post-exposure prophylaxis.

We continue to recommend completing the COVID-19 vaccination for all of our transplant patients and will be contacting patients pro-actively in a separate communication regarding scheduling the recently approved 3rd dose mRNA COVID-19 vaccine to those who are eligible. For immediately transplanted patients, due to the amount of medication used to lower the immune system at the time of your transplant which affects your body’s response to the vaccine, it is advised that those who received a bone marrow transplant, kidney transplant, heart transplant, heart & lung transplant, or a pancreas transplant should wait until 3 months after your transplant to receive your third COVID vaccination. Patients who are immediately post liver and lung transplant are advised to wait until at least 1-month post-transplant.

Thank you for trusting your health care to Mayo Clinic.

Sincerely,

Your Mayo Clinic Healthcare Team

REPLY
@jennifer0726

I will share my Mayo letter about monoclonal antibodies.

Dear Mayo Clinic Transplant Patient,

As COVID-19 continues to circulate around our communities, we want to send a reminder to continue to practice social distancing, avoid crowded spaces, and to wear masks or face coverings.

With a recent Food and Drug Administration Emergency Use Authorization, we would like to inform you of a new treatment that may be available to you in case of an exposure to a known COVID-19 positive individual. This monoclonal antibody known as REGEN-COV is to be administered as soon as possible after an exposure to COVID-19 individual. If you have an exposure to someone with COVID-19, please notify your transplant team as soon as possible, so that they can refer you to the COVID-19 treatment team to review if you qualify for this post-exposure prophylaxis.

We continue to recommend completing the COVID-19 vaccination for all of our transplant patients and will be contacting patients pro-actively in a separate communication regarding scheduling the recently approved 3rd dose mRNA COVID-19 vaccine to those who are eligible. For immediately transplanted patients, due to the amount of medication used to lower the immune system at the time of your transplant which affects your body’s response to the vaccine, it is advised that those who received a bone marrow transplant, kidney transplant, heart transplant, heart & lung transplant, or a pancreas transplant should wait until 3 months after your transplant to receive your third COVID vaccination. Patients who are immediately post liver and lung transplant are advised to wait until at least 1-month post-transplant.

Thank you for trusting your health care to Mayo Clinic.

Sincerely,

Your Mayo Clinic Healthcare Team

Jump to this post

Thank you! Think I’ll discuss with my transplant team!

REPLY
@hello1234

Hi @athenalee @mollyv @loribmt my Mayo Connect friends! Thank you so much for responding with how you are functioning during Covid-19. It's always comforting to know you are not alone. I am doing the exact same process. I wear my N95 when I need to go out, but I avoid going out. I "ninja" too!!! I never thought of it that way, but that's exactly what I do in a store… I love that expression (Ninja!)
I think everyone can come to Florida in the winter as long as you continue to be super careful and stay home, enjoy your backyard. I have my food delivered to my house. In our supermarkets, the workers are told to wear masks, but the customers are all walking around unmasked (and most likely unvaccinated, since our vaccination rate is low). Matter of fact, I have everything delivered. Costco, Publix, Amazon, etc. At this point, I avoid most face to face encounters.
(And @mollyv thank you so much for letting me know that monoclonal antibodies are endorsed by your Mayo transplant team if you encounter the infection, that's really good to know.)
Hey everyone, do you think things will be better under control by Spring 2022 as Dr Fauci projected or longer?

Jump to this post

Sadly, I’m thinking not. But I tend towards the cynical anyway. With so many people unvaccinated though it’s Covid is going to keep mutating. There is already a new variant infecting people. And, it’ll probably never fully go away. So, I’m figuring those who remain ninja like will persevere and those that let their politics and unfounded beliefs guide their lives will unfortunately suffer, as will our world.

REPLY
@athenalee

Sadly, I’m thinking not. But I tend towards the cynical anyway. With so many people unvaccinated though it’s Covid is going to keep mutating. There is already a new variant infecting people. And, it’ll probably never fully go away. So, I’m figuring those who remain ninja like will persevere and those that let their politics and unfounded beliefs guide their lives will unfortunately suffer, as will our world.

Jump to this post

@athenalee unfortunately I agree with you. Do you think there will be a time in the future when we can come out of our bubble… and enjoy shopping again?

REPLY
@hello1234

@athenalee unfortunately I agree with you. Do you think there will be a time in the future when we can come out of our bubble… and enjoy shopping again?

Jump to this post

Good morning @hello1234, I think that’s a wait and see question. One which, like now, may continue to be relative to where you live. We have 87% vaccinated and just over 2% positivity, the lowest in the country. Florida doesn’t even report positivity rates anymore, which I personally would be frightened of. Our governor is still holding weekly Covid press conferences, most businesses require masks, and all but one school district is requiring masks.

So, keep positive, work on your mask attire, and hope for the best! And, while you remain indoors, practice your dance 💃🏼 moves and visit – https://www.vermontvacation.com/

REPLY
Please sign in or register to post a reply.
  Request Appointment