I've heard of a bunch of cases being linked to Taylor Swift's Eras tour. I've seen videos on social media of a person who attended the eras tour masked, and is receiving a lot of backlash for taking precautions. I think people like to believe Covid is over, and unfortunately that isn't the case. Most places I've heard of are having spikes in case numbers right now
I am in the Denver, CO area and I haven't seen much of a resurgence but my coworkers in CT say they are seeing an increase. As things do, I am just waiting for it to make its way to CO. We also just started back to school season and kids always get sick at back to school time. I wonder if parents will check for covid or just assume its a back to school sniffle and continue to send their kids to school.
I am scheduled to attend a conference for work in October, in Vegas. It makes me a little nervous since Vegas is always so crowded.
@AliEm14 , I didn't even think about the TSwift Eras tour, but of course that will be a source of super spread. So many people paid tremendous amounts of money to attend, and I am sure attended if when they weren't feeling 100%.
I'm in San Diego. Cases are still low but rising. 2 months ago I received my 2nd bivalent booster. It is good for us to stay up to date on the covid vaccines just in case.
I just spoke with a Covid nurse at the Mayo clinic in Jacksonville, Florida and she said their case are way up in the last two weeks. They are matching the early Winter 2022 numbers.
Has anyone had their booster 4 months after their first one ? I would like to get the new one in October 2023 and it will be four months since my bi-valent. My PC said he thinks it ok. For transplant I heard even 2 months apart..
I have never had any of the Covid vaccines. I am very unsure of putting it in my body w/all the other immuno meds that we have to take, I have not had Covid thus far when I had my LTP Covid was rampant but the vaccine was not yet here. I have had many friends /family that have taken the vaccines boosters and have had multiple problems. Of course this is my choice not to vaccinate.
The original course of vaccines was three for transplant resipients and older people. These are the CDC and World health Organization Guidelines. Transplant recipients did seem to have a strong antibody response with three shots. Then After the Omicron version of Covid, that was so deadly, there was the Bivalent booster, available in the Fall of 2022. It was available for immunocompromised and people over 65 six months after the first booster. This Fall there is supposed to be a much better vaccine, becoming available in early October. The science shows vaccines do help, even for transplant patients who have less of a response. They are not as good as the immunoglobulins were but those are no longer available as the virus keeps changing. I have never had a bad experience with the vaccines s nor have any friends or family other than feeling bad the second or third day , which is normal. It does seem that the Moderna vaccine has more side effects. There is also one made by Phizer and you do have a choice. I was just wondering what others are thinking about the new vaccine. I am so grateful for everyone on this site, thank you !
Oooh this is interesting. I am traveling to San Diego in October for the Alport Syndrome Foundation Connect event and now keeping this in mind as I travel and interact with people.
This might be considered a little controversial in this community, but I am feeling really weary about being a transplant patient that is already vaccinated and really resistant on getting any more "boosters". Ive seen TONS of articles like these:
I have attached something my Infectious disease doctor shared with me. It seems the Bivalent vax only really helps about 30% for two months for immunocompromised. You might want to keep masking and plan to get the next vaccine in October. That is what I was advised.
Hi, definitely feel it has kept me safe from getting Covid/flu. 😊 and of course washing hands, hand sanitizer always. I could never get into wearing disposable gloves.
I had my kidney transplant December 5, 2019 and struggled so much mentally as we went right into pandemic. I quarantined and only walked outside for almost 2 years. I was finally starting to live and took my mask off just 6 months ago to go to the supermarket. I have never had Covid. I live in Pennsylvania. Feels like that fear is returning. I recently had a scare when my daughter;s friend visited and she became ill and tested positive. My transplant physican in NYC saisd there was nothing they could do if in tested positive as the monoclonal antibodies no longer work witth the new variants. They said they had no patient deaths in 6 months. Sometimes it just feels overwhelming when i hear of all the new cases with winter coming.
Jay I know what u mean.. I have not had Covid but as I have said in earlier post I have continued to wear my mask and try to be cautious as i can. I have decided not to be vaccinated so I try to be careful.
You can and should do something. The Mayo clinic offers out patient Remdesivir. See what is available in your area. If you test positive this three day out patient treatment almost always keeps immunocompromised people out of the hospital and with a much easier recovery. If you feel like your physician is belittling you, find another one. You always deserve respect and compassion :)
Yes … the transplant PA mentioned outpatient Remdesevir in case of severe breathing issues … they only had to administer once in last 6 months to an elderly woman patient in breathing distress. I didn’t end up testing positive for COVID and had no symptoms or illness … when I said there was nothing they could do .. I should have clarified that …they said there was no prophylactic treatment such as previously with monoclonal antibodies .. o had my transplant in NYC at a hospital that was ranked in top 5 in the United States …I called proactively to see what was available if I ended up testing positive .. I had yeh bivalent vaccination in May 2023… I appreciate the knowledge and care and responding to me…. It was not suggested or recommended to get any prophylactic medications. I was trying to express what I was told in the sense that they were telling me they were treating this differently than I understood previously… Thank God I did not get sick…
Also, just wanted to mention something it was actually my general practitioner office Doctor Who was on call, but I was concerned about possibly tested positive… Who mentioned they were something approved in Europe, called REGEN… Not sure if that’s the right name but the doctor surprised me by saying he was going to try to get someone in local hospital to see if they could get it for me as a prophylactic treatment, I asked the top transplant center which I mentioned earlier, and t have not used or come in contact with it as a treatment… I consider myself a little bit may be overly proactive if that’s a thing… Has anyone been like that? Or can relate? I appreciate the part he said about not letting the physician be little…. That actually did happen to me with my regular nephrologist , who is the chief of practice where I live in Pennsylvania and I decided to switch doctors within the practice, and I am going to see the new doctor… I am going to make a post about this topic…
Jay, thank you for sharing! When it comes to transplants I don't think there is such a thing as being too proactive. I see my team of doctors as my partners and guides. It is ultimately up to me to make the transplant as successful as I can. So, yes, keep being proactive. Be your own advocate.
I've had my kidney transplant for 17 1/2 years. Let me tell you, it's a crazy journey. I used to work in an environment with A LOT of people for most of my transplant life. I did not get sick very often because I would constantly wash my hands and was in the habit of never touching my face while in public. This isn't to say I haven't had any viruses over the years. I have my little triage at my home. Blood pressure machine, thermometer, and o2 meter. So anything weird pops up I know to call transplant right away or go to the ER.
Yes! Be as proactive as you can. Nothing wrong with switching doctors until you find someone you like. Its important that you have a connection with the team of doctors because they will be in your life forever. I usually apologize to my team for being annoying. Haha.
Hi Jeanmarie … thank you for your encouragement and words of wisdom. You are a role model appreciate you so much. Can we connect further on the platform?
1 - 27 of 27 Replies
Transplant Patient
I've heard of a bunch of cases being linked to Taylor Swift's Eras tour. I've seen videos on social media of a person who attended the eras tour masked, and is receiving a lot of backlash for taking precautions. I think people like to believe Covid is over, and unfortunately that isn't the case. Most places I've heard of are having spikes in case numbers right now
I am in the Denver, CO area and I haven't seen much of a resurgence but my coworkers in CT say they are seeing an increase. As things do, I am just waiting for it to make its way to CO. We also just started back to school season and kids always get sick at back to school time. I wonder if parents will check for covid or just assume its a back to school sniffle and continue to send their kids to school.
I am scheduled to attend a conference for work in October, in Vegas. It makes me a little nervous since Vegas is always so crowded.
@AliEm14 , I didn't even think about the TSwift Eras tour, but of course that will be a source of super spread. So many people paid tremendous amounts of money to attend, and I am sure attended if when they weren't feeling 100%.
I'm in San Diego. Cases are still low but rising. 2 months ago I received my 2nd bivalent booster. It is good for us to stay up to date on the covid vaccines just in case.
Transplant Patient
Huge caseload in the nyc area but luckily very few hospitalization cases…
I just spoke with a Covid nurse at the Mayo clinic in Jacksonville, Florida and she said their case are way up in the last two weeks. They are matching the early Winter 2022 numbers.
Has anyone had their booster 4 months after their first one ? I would like to get the new one in October 2023 and it will be four months since my bi-valent. My PC said he thinks it ok. For transplant I heard even 2 months apart..
How many Covid vaccines are there? I think I’ve missed one and now I’m really nervous. Ugh
I have never had any of the Covid vaccines. I am very unsure of putting it in my body w/all the other immuno meds that we have to take, I have not had Covid thus far when I had my LTP Covid was rampant but the vaccine was not yet here. I have had many friends /family that have taken the vaccines boosters and have had multiple problems. Of course this is my choice not to vaccinate.
Hi,
The original course of vaccines was three for transplant resipients and older people. These are the CDC and World health Organization Guidelines. Transplant recipients did seem to have a strong antibody response with three shots. Then After the Omicron version of Covid, that was so deadly, there was the Bivalent booster, available in the Fall of 2022. It was available for immunocompromised and people over 65 six months after the first booster. This Fall there is supposed to be a much better vaccine, becoming available in early October. The science shows vaccines do help, even for transplant patients who have less of a response. They are not as good as the immunoglobulins were but those are no longer available as the virus keeps changing. I have never had a bad experience with the vaccines s nor have any friends or family other than feeling bad the second or third day , which is normal. It does seem that the Moderna vaccine has more side effects. There is also one made by Phizer and you do have a choice. I was just wondering what others are thinking about the new vaccine. I am so grateful for everyone on this site, thank you !
Oooh this is interesting. I am traveling to San Diego in October for the Alport Syndrome Foundation Connect event and now keeping this in mind as I travel and interact with people.
This might be considered a little controversial in this community, but I am feeling really weary about being a transplant patient that is already vaccinated and really resistant on getting any more "boosters". Ive seen TONS of articles like these:
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00212-2/fulltext
https://www.science.org/content/article/transplant-patients-higher-rate-covid-19-breakthroughs-boosts-case-booster-vaccines
So
I have attached something my Infectious disease doctor shared with me. It seems the Bivalent vax only really helps about 30% for two months for immunocompromised. You might want to keep masking and plan to get the next vaccine in October. That is what I was advised.
Hi, I have never quit masking. I feel for me safer to do this.
Hi Melsamm,
I never go out without wearing mine either, and I agree it's the best defense :)
Hi, definitely feel it has kept me safe from getting Covid/flu. 😊 and of course washing hands, hand sanitizer always. I could never get into wearing disposable gloves.
Transplant Patient
I am this way as well. I've had mixed feelings about vaccines as well, and lean heavier into mask wearing, hand washing... I've also never had covid.
I had my kidney transplant December 5, 2019 and struggled so much mentally as we went right into pandemic. I quarantined and only walked outside for almost 2 years. I was finally starting to live and took my mask off just 6 months ago to go to the supermarket. I have never had Covid. I live in Pennsylvania. Feels like that fear is returning. I recently had a scare when my daughter;s friend visited and she became ill and tested positive. My transplant physican in NYC saisd there was nothing they could do if in tested positive as the monoclonal antibodies no longer work witth the new variants. They said they had no patient deaths in 6 months. Sometimes it just feels overwhelming when i hear of all the new cases with winter coming.
Jay I know what u mean.. I have not had Covid but as I have said in earlier post I have continued to wear my mask and try to be cautious as i can. I have decided not to be vaccinated so I try to be careful.
Hi Jay,
You can and should do something. The Mayo clinic offers out patient Remdesivir. See what is available in your area. If you test positive this three day out patient treatment almost always keeps immunocompromised people out of the hospital and with a much easier recovery. If you feel like your physician is belittling you, find another one. You always deserve respect and compassion :)
Yes … the transplant PA mentioned outpatient Remdesevir in case of severe breathing issues … they only had to administer once in last 6 months to an elderly woman patient in breathing distress. I didn’t end up testing positive for COVID and had no symptoms or illness … when I said there was nothing they could do .. I should have clarified that …they said there was no prophylactic treatment such as previously with monoclonal antibodies .. o had my transplant in NYC at a hospital that was ranked in top 5 in the United States …I called proactively to see what was available if I ended up testing positive .. I had yeh bivalent vaccination in May 2023… I appreciate the knowledge and care and responding to me…. It was not suggested or recommended to get any prophylactic medications. I was trying to express what I was told in the sense that they were telling me they were treating this differently than I understood previously… Thank God I did not get sick…
Also, just wanted to mention something it was actually my general practitioner office Doctor Who was on call, but I was concerned about possibly tested positive… Who mentioned they were something approved in Europe, called REGEN… Not sure if that’s the right name but the doctor surprised me by saying he was going to try to get someone in local hospital to see if they could get it for me as a prophylactic treatment, I asked the top transplant center which I mentioned earlier, and t have not used or come in contact with it as a treatment… I consider myself a little bit may be overly proactive if that’s a thing… Has anyone been like that? Or can relate? I appreciate the part he said about not letting the physician be little…. That actually did happen to me with my regular nephrologist , who is the chief of practice where I live in Pennsylvania and I decided to switch doctors within the practice, and I am going to see the new doctor… I am going to make a post about this topic…
Jay,yes I am glad u did not either 💪💙💚 you can never be over caution being a TP patient, we have to be proactive.
Thank you Melsamm you are kind
Jay, thank you for sharing! When it comes to transplants I don't think there is such a thing as being too proactive. I see my team of doctors as my partners and guides. It is ultimately up to me to make the transplant as successful as I can. So, yes, keep being proactive. Be your own advocate.
I've had my kidney transplant for 17 1/2 years. Let me tell you, it's a crazy journey. I used to work in an environment with A LOT of people for most of my transplant life. I did not get sick very often because I would constantly wash my hands and was in the habit of never touching my face while in public. This isn't to say I haven't had any viruses over the years. I have my little triage at my home. Blood pressure machine, thermometer, and o2 meter. So anything weird pops up I know to call transplant right away or go to the ER.
Yes! Be as proactive as you can. Nothing wrong with switching doctors until you find someone you like. Its important that you have a connection with the team of doctors because they will be in your life forever. I usually apologize to my team for being annoying. Haha.
Hi Jeanmarie, I totally agree with everything you said. Thank you
Hi Jeanmarie … thank you for your encouragement and words of wisdom. You are a role model appreciate you so much. Can we connect further on the platform?
@Melsamm Thank you so much! You are awesome!
@Jay You are very kind. Yes of course feel free to connect. Keep up the good work with your transplant!
💚💙❤️😊😊