To vaccinate or not to vaccinate? That is the question.

Posted by silverwoman @silverwoman, Jan 4, 2021

<p>I know I am not the only post-transplant patient who is thinking about getting the coVID vaccination. My nurse coordinator has told me that the transplant team at Jacksonville has not approved vaccination yet because of the lack of experience with it for our group. One of the Infectious Disease doctors has indicated in a Mayo communication that transplants should be getting vaccinated. The nurse coordinator has said that if we choose to get vaccinated then we should do our laboratories once a week. I'm frustrated and confused by the lack of clear guidance and seemingly conflicting opinions. Is anybody else feeling like this? Have you made any decisions about when and if you will get vaccinated?</p>

Interested in more discussions like this? Go to the Transplants Support Group.

@keggebraaten

@ess77 and all, Getting hold of a physician can sometimes be a challenge because many aren't given administrative time in their day to answer and return phone calls. I am sorry you had this experience with your PCP. I hope you are able to work out a better system to contact them in the future. Many doctor's offices have processes for patients who need assistance after hours or when they can't reach their usual doctor.

At Mayo Clinic, transplant patients are all given a card with an after hours phone number to contact the organ transplant physician on-call. This number reaches someone 24 hours a day/7 days a week in case of a patient emergency. Our hope is that our patients use this number in situations similar to yours, when they need assistance, but don't feel the situation requires 911. Many other hospitals have a similar system. Everyone should ask their doctors how best to contact them during and after business hours. Of note, patient portals are nice for communication, but keep in mind they should not be used for urgent matters. While we usually handle messages within a day, Mayo Clinic has a 2-4 day turn around expectation to patient portal messages. If you require immediate assistance, the portal may not be your best method of contacting your doctor as it may take them a day or more to get to your message.

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Thanks, Kristin. Great information. I suppose if I had an after hours issue I handle it myself, usually. I've called 911 several times when I was having tremor problems or reactions to meds or whatever, but these kinds of things I use Crucial Care. Only thing - they close at 7!

So, in fact, I may go to the Mayo Hospital later. My temp is still very low, 96.3 today and I'm not feeling well, but it takes some time to get over an infection like this. The low temp bothers me, tho. I''ve called Crucial Care yesterday and today to get the bloodwork bateria test results. Can't get an answer. Waiting for the nurse, who's very busy, to call w/results and change antibiotic if necessary. So, at 5pm.

Pooh! Guess I'll get dressed and hit the Mayo Hospital just to be safe. I've doubled my antibiotic daily dose, on my own. Let you know what happens when the new day arrives! blessings, Elziabeth

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@ess77

Hi, Charlie. I've had a couple of friends, in their 70's, who have died from covid. Another friend is about 47 and was in ICU for a couple of weeks, almost put on a ventilator, but a medication they gave him at that time, don't know what, with additional oxygen pulled him through.

He kept a journal of his experience. Amazingly frightening for him. I do not trust, not necessarily the numbers, as they can be manipulated to say what you want, but I do trust the facts of the % of deaths and serious illness for those over 65. And, the lasting effects. He seems to be ok, although there are some issues re his heart he didn't have before covid. So, watching and praying with him.

I don't plan and will do everything in my power to keep from getting covid! As will I suspect most of us. I have too many other things going on in this body at the moment that I don't think I would have the same experience as you.

Got the Maderno vaccine Tuesday at Mayo. So far, no side effects. Not one. I'm amazed. But, the 2nd shot in a few weeks might be a real bugger. Stay tuned.
Blessings. Elizabeth

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I completely understand, Elizabeth, my mother got COVID in October and died within 10 days, but she was week and had a few strokes, I'm not going to say and I know its a strange virus and effects differently but I've herd stories where cases were marked as a COVID death, but weren't actually , I'm worried about the information shared about this virus and how it has been handled, we have to be very proactive with our care.

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@ess77

JK, I have excellent interaction and response from my Mayo specialists. Several have responded to my portal question or comment via phone call, surprisingly! I'm not used to that kind of involvement w/the doc directly. It's a real treat when you can in just a quick or not so quick chat solve issues and help so much. I really appreciate this. My PCP has called me once. His staff have responded to messages but usually have little idea of what's happening. It's good there's response, but frustrating as well.

How did you find your new PCP? Suggestions?
Blessings, Elizabeth

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@ess77 I think the larger hospitals actually do have better patient service than the local ones. I am in southern NH and people assume that the hospitals in Boston are impersonal but I have found just the opposite to be true. My doctors at Mass General seem genuinely caring and responsive.

I found my new PCP with recommendations from a couple of people, plus a magazine up here, NH Magazine, has doctor ratings once a year and she was well rated there and on the online doctor rating sites. I only believe the online sites if there are enough individual reviews to be a good sampling. If there are five or less I figure that they can too easily be skewed.

My new PCP was one I was considering when I chose the PCP I had. I had three doctors under consideration and she was one of them. I had a few women PCPs before that and they seemed less interested in their patients, I believe their family involvement with their children took a strong priority and their patients came in a distant second. For that reason, I chose to go with the man. I think the woman I am currently seeing is not married so that would not be the case. I have to admit, the man I was going to was very caring and when I was struggling pre-transplant he often called me to see how I was doing and he kept track of me all the time. The two things I had against him though were dropping the ball on my osteoporosis, and long before that, not diagnosing my cirrhosis. I was sent to a neurologist because they thought one of my symptoms was neurological and he was the one who said he thought the problem was my liver! Had it not been for him I don't know how much longer it would have taken to get a diagnosis. At that point, it had been 16 months.

Good luck finding a new PCP, it is not easy, and around here, generally speaking the really good ones are not taking new patients.
JK

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@gingerw

One of the things my county's public health spokesperson commented on, in his Friday fb live video, was a little known fact that those who have an allergy to bees may have a bit more reaction to the vaccine, than others. Very interesting that noone else has mentioned it!

I am allergic to bee stings!
Ginger

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@gingerw; @ess77: - GOod morning. I think that the most important thing that you can do is discuss this with your PCP's. I would make sure that everyone involved with your vaccine is aware of your history with your allergies. So far there is no known connection between the vaccines and eggs or bee stings. Also, there is conflicting advice about whether people with major allergic reactions, like anaphylaxis, should be inoculated or not. I have read that if you choose to have the vaccine then you must tell the vaccinators your history so that they can be prepared to treat you if you do have a reaction. Another thought that just came to my mind is asking yourself if you want to take the chance of an allergic reaction that really stresses your body and immune system.

Again, all of these factors should be mulled over very seriously and discussed with your PCP and probably your specialists. Make sense?

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@merpreb

@gingerw; @ess77: - GOod morning. I think that the most important thing that you can do is discuss this with your PCP's. I would make sure that everyone involved with your vaccine is aware of your history with your allergies. So far there is no known connection between the vaccines and eggs or bee stings. Also, there is conflicting advice about whether people with major allergic reactions, like anaphylaxis, should be inoculated or not. I have read that if you choose to have the vaccine then you must tell the vaccinators your history so that they can be prepared to treat you if you do have a reaction. Another thought that just came to my mind is asking yourself if you want to take the chance of an allergic reaction that really stresses your body and immune system.

Again, all of these factors should be mulled over very seriously and discussed with your PCP and probably your specialists. Make sense?

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@merpreb Absolutely makes sense! It is my understanding the reaction may be a little more pronounced, if there is any at all. It's often that the reaction from a Medical Assistant to their query about allergies, they are looking for medications. I always include bee stings.
Ginger

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I finally found info on the Mass General portal for transplant patients and the Covid vaccine. They suggest that we get it, but that patients who are fewer than 3 months out from transplant wait, and people with allergies should check on that. It also says the vaccine will probably not work as well on us - no surprise there - due to our immunotherapy. If you are pre-transplant they suggest getting it then.

It also says everyone should continue with the precautions we take now and that the "infection control experts" will let us know when we can ease up on them.

I am so glad that they have made an official statement.
JK

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My county has just changed the age of tier1a to anyone over 65. I called my doctor's office this afternoon. They called back at around 7 pm and said Memorialcare group is getting the vaccine next week and I would be contacted via the patient portal about vaccination. If I don't hear from them by end of the month, I should call them again. Needless to say, I'm very relieved to get an answer. I'll wait patiently for their notification.

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@ca426

I completely understand, Elizabeth, my mother got COVID in October and died within 10 days, but she was week and had a few strokes, I'm not going to say and I know its a strange virus and effects differently but I've herd stories where cases were marked as a COVID death, but weren't actually , I'm worried about the information shared about this virus and how it has been handled, we have to be very proactive with our care.

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@ca426, I am so sorry for your loss of your mother, Charlie.

COVID is such a bad actor that it will probably take some time for docs and scientists to more fully understand its effects. In the meantime, there are probably many deaths where the cause is labeled Covid mistakenly and others where Covid is the culprit but cause is thought to be from some other condition.

I so agree that all of us need to be very proactive in learning how to better manage our chronic health conditions. Take care.

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@mayofeb2020

My county has just changed the age of tier1a to anyone over 65. I called my doctor's office this afternoon. They called back at around 7 pm and said Memorialcare group is getting the vaccine next week and I would be contacted via the patient portal about vaccination. If I don't hear from them by end of the month, I should call them again. Needless to say, I'm very relieved to get an answer. I'll wait patiently for their notification.

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@mayofeb2020 Good for you! Our area announced new parameters, also, and I hope to get started on vaccine doses sooner than later. I think it is so important that those who want to be vaccinated, be able to get them.
Ginger

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I'm happy!
This week I contacted my transplant nurse coordinator through the Mayo patient portal and learned that I should get the COVID-19 vaccine when it is available where I live. She said I could get whatever is being distributed locally. I already know that it will be the Moderna after talking with my local pharmacist, because that is what is being distributed here due to storage requirement.
Like everyone else, I am anxiously waiting, and watching my local media outlets for updated information. After I get it,1st and 2nd dose, I will contact her so that it can be added to my records.

Today I took the opportunity to listen to the newest Video Q&A on COVID-19 on Vaccines. I urge you to treat yourself to a 30 minute break and sit down for a relaxing, informative, and hopeful message from Dr. Gregory Poland, Infectious Disease Expert.
https://connect.mayoclinic.org/page/podcasts/newsfeed-post/expert-updates-on-covid-19-vaccines/
I especially like how he and interviewer/ host Halena Gazelka, M.D., used questions from listeners for the Q&A. Of particular interest to me is how the scientific community is so fact/data driven.
Did You hear any answers to you might have had? How will it help you to find some peace as you wait for your own vaccine? Or as you decide to not get the vaccine?

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