1. < Transplants

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.

JK | @contentandwell | Jan 13, 2021
In reply to @rosemarya "I'm happy! This week I contacted my transplant nurse coordinator through the Mayo patient portal and..." + (show)
@rosemarya

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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@rosemarya what I saw here in NH was to be status 1B you have to have more than one risk factor. I believe I do since I’m on immunosuppressants and diabetic, but what I’m not sure of is what we need to present to whomever is at the vaccination site to show that we are. I have sent a message to my PCP on the portal asking if I need some proof from her. Unfortunately my new PCP is not very good about responding to the portal and the staff who man the phone are not the best so I prefer to not call. 😖
JK

REPLY
Merry, Alumni Mentor | @merpreb | Jan 14, 2021
In reply to @rosemarya "I'm happy! This week I contacted my transplant nurse coordinator through the Mayo patient portal and..." + (show)
@rosemarya

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?

Jump to this post

@rosemarya- This is certainly great news, Rosemary. Dr. Gazelka and Poland sure make a great team. They cover everything about COVID-19. I'm very thankful to them for enlightening all of us so that we learn the scientific facts about this deadly virus.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 27, 2021
In reply to @silverwoman "Amanda, As you may have guessed, I have done my homework and educated myself pretty thoroughly..." + (show)
@silverwoman

Amanda, As you may have guessed, I have done my homework and educated myself pretty thoroughly on the pros and cons of having the vaccination. I'm also following everything Mayo puts out on the subject daily and have contacted my Mayo coordinator for guidance. Thanks for the suggestions. If any of you see a definitive statement regarding taking the vaccination from the Transplant Department, please put it out here on Connect so that we all get the information.

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@silverwoman, I was at Mayo-Rochester two days ago (Jan 25) for my 19th month follow up for a bone marrow transplant. While it’s not a solid organ transplant, we share many of the same anti-rejection drugs and are immuno-compromised for some time. Visiting with the transplant team, my doctor was very empathic to GET the vaccine as soon as it’s available. We’re all very vulnerable and while it’s not certain the efficacy for those of us compromised, it will still help ramp up our immune systems to recognize the virus should we become exposed. I also recently received an email from the Transplant Dept at Mayo stating they are encouraging transplant patients to receive the vaccine though it is advised to contact your physician or nurse coordinator first. But it appears generally accepted across the board for transplant patients. Hope this helps you!

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athenalee | @athenalee | Jan 28, 2021

Hello! I am just five months out of my liver transplant. I was reluctant to get the vaccine as I had read a couple articles that raised concerns. However, the Lahey Transplant Team has arranged for transplant patients to get vaccinated. I trust them and their expertise, so have signed up to get it in two weeks. The vaccine is assumed to give us less protection, so we’ll be masking up and isolated for a while still. But I figure 40-50% protection is better than none.

REPLY
1 reply
JK | @contentandwell | Jan 28, 2021
In reply to @silverwoman "Amanda, As you may have guessed, I have done my homework and educated myself pretty thoroughly..." + (show)
@silverwoman

Amanda, As you may have guessed, I have done my homework and educated myself pretty thoroughly on the pros and cons of having the vaccination. I'm also following everything Mayo puts out on the subject daily and have contacted my Mayo coordinator for guidance. Thanks for the suggestions. If any of you see a definitive statement regarding taking the vaccination from the Transplant Department, please put it out here on Connect so that we all get the information.

Jump to this post

@silverwoman @loribmt I was contacted by my transplant hospital, Mass General in Boston, and they set up for their solid organ recipients to get the vaccine, so that's definitely an endorsement.

I got an appointment for my first shot last Sunday, and my second one is scheduled for February 14th. NH is doing quite well with getting the vaccine to those over 65 but I was able to get it sooner at Mass General so I chose to go there. My husband will get his here on February 5th.

@danab I wish I had saved the article I read, but in the rush in to get the vaccine out there were no compromises on safety. The things that were a bit bypassed were learning further information such as just how much immunization the vaccine will provide for those of us on immunosuppressants, things like that. The nurse who gave me the shot at MGH thought that after enough people who are immunosuppressed have gotten the vaccines they will do a check to see how many antibodies they have.
JK

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 28, 2021
In reply to @athenalee "Hello! I am just five months out of my liver transplant. I was reluctant to get..." + (show)
@athenalee

Hello! I am just five months out of my liver transplant. I was reluctant to get the vaccine as I had read a couple articles that raised concerns. However, the Lahey Transplant Team has arranged for transplant patients to get vaccinated. I trust them and their expertise, so have signed up to get it in two weeks. The vaccine is assumed to give us less protection, so we’ll be masking up and isolated for a while still. But I figure 40-50% protection is better than none.

Jump to this post

@athenalee, Hello and Welcome to Mayo Connect. Congratulations on being 5 months out of your liver transplant. I hope that you are healing and getting accustomed to taking care of your new liver. I want to veer off topic for a moment to invite you to visit any of the transplant discussions that might be of interest to you. Just click and join in anywhere. That's how we operate here - all are welcome. As patients, we love to reach out and to share our 'expert' patient experiences to support each other.

I am happy that you are scheduled for a vaccine. I messaged my nurse coordinator at Mayo, and since I live at a distance from my transplant center, I will be getting my vaccine locally, when they become available. I'm currently registered on a waiting list 45 miles away, and I check my email constantly for my invitation to schedule an appointment. I thought that I was an expert on waiting due to waiting for transplant, but this is a difficult wait for me. On a personal note, I want to thank you for sharing about your vaccine appointment because it gives me hope that I will be notified.

How is your recovery going?

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1 reply
athenalee | @athenalee | Jan 28, 2021
In reply to @contentandwell "@silverwoman @loribmt I was contacted by my transplant hospital, Mass General in Boston, and they set..." + (show)
@contentandwell

@silverwoman @loribmt I was contacted by my transplant hospital, Mass General in Boston, and they set up for their solid organ recipients to get the vaccine, so that's definitely an endorsement.

I got an appointment for my first shot last Sunday, and my second one is scheduled for February 14th. NH is doing quite well with getting the vaccine to those over 65 but I was able to get it sooner at Mass General so I chose to go there. My husband will get his here on February 5th.

@danab I wish I had saved the article I read, but in the rush in to get the vaccine out there were no compromises on safety. The things that were a bit bypassed were learning further information such as just how much immunization the vaccine will provide for those of us on immunosuppressants, things like that. The nurse who gave me the shot at MGH thought that after enough people who are immunosuppressed have gotten the vaccines they will do a check to see how many antibodies they have.
JK

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I don’t know if this has been posted before, John Hopkins is conducting a “COVID-19 Antibody Testing of Recipients of Solid Organ Transplants” being led by its transplant team. https://transplantvaccine.org/

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jerrynord | @jerrynord | Jan 28, 2021

Mayo should be doing this also but have heard nothing.

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athenalee | @athenalee | Jan 28, 2021
In reply to @rosemarya "@athenalee, Hello and Welcome to Mayo Connect. Congratulations on being 5 months out of your liver..." + (show)
@rosemarya

@athenalee, Hello and Welcome to Mayo Connect. Congratulations on being 5 months out of your liver transplant. I hope that you are healing and getting accustomed to taking care of your new liver. I want to veer off topic for a moment to invite you to visit any of the transplant discussions that might be of interest to you. Just click and join in anywhere. That's how we operate here - all are welcome. As patients, we love to reach out and to share our 'expert' patient experiences to support each other.

I am happy that you are scheduled for a vaccine. I messaged my nurse coordinator at Mayo, and since I live at a distance from my transplant center, I will be getting my vaccine locally, when they become available. I'm currently registered on a waiting list 45 miles away, and I check my email constantly for my invitation to schedule an appointment. I thought that I was an expert on waiting due to waiting for transplant, but this is a difficult wait for me. On a personal note, I want to thank you for sharing about your vaccine appointment because it gives me hope that I will be notified.

How is your recovery going?

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Thank you for asking! It’s been a short but intense journey from being a perfectly healthy individual to being diagnosed with stage 3 liver cirrhosis in July 2019, followed in October with finding out the cirrhosis was caused by PBC. Then almost bleeding to death twice due to bursting varices, having the TIPS procedure, and then in early August getting on the transplant waiting list. It was truly a blessing to receive my new liver on August 20.

My energy is good these days, although I’m struggling with gaining weight...still only weighing in at 104 (5.5 ft. tall). I have tremendous muscle and joint aches (possibly drug side effects?), I have pretty bad tremors, and my right leg is numb (not sure why...side-effects? probably have to see a neurologist). Liver enzymes fluctuate some between normal range and being elevated, but except for a very low platelet count most of the other blood indicators are good. I’m eating healthy, being good to my liver, walking regularly, taking my meds as directed, and trying to remain upbeat despite being isolated and unemployed. All things considered I’d give it a “not bad!”

I’d love to hear from others how they progressed post transplant.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 28, 2021
In reply to @athenalee "Thank you for asking! It’s been a short but intense journey from being a perfectly healthy..." + (show)
@athenalee

Thank you for asking! It’s been a short but intense journey from being a perfectly healthy individual to being diagnosed with stage 3 liver cirrhosis in July 2019, followed in October with finding out the cirrhosis was caused by PBC. Then almost bleeding to death twice due to bursting varices, having the TIPS procedure, and then in early August getting on the transplant waiting list. It was truly a blessing to receive my new liver on August 20.

My energy is good these days, although I’m struggling with gaining weight...still only weighing in at 104 (5.5 ft. tall). I have tremendous muscle and joint aches (possibly drug side effects?), I have pretty bad tremors, and my right leg is numb (not sure why...side-effects? probably have to see a neurologist). Liver enzymes fluctuate some between normal range and being elevated, but except for a very low platelet count most of the other blood indicators are good. I’m eating healthy, being good to my liver, walking regularly, taking my meds as directed, and trying to remain upbeat despite being isolated and unemployed. All things considered I’d give it a “not bad!”

I’d love to hear from others how they progressed post transplant.

Jump to this post

@athenalee, pop over to this discussion to meet other liver transplant patients:
- Liver transplant support group https://connect.mayoclinic.org/discussion/liver-support-group/

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