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.

@ess77, @contentandwell, @ga29

This is an important topic, one that many members are also interested in. However, it is going to get lost in this discussion about COVID-19 vaccines. I did some searching, and I found some discussions where this topic will be more visible to others with similar experiences. (Click on the blue link)

- Groups>Aging Well>important information about statins - https://connect.mayoclinic.org/discussion/important-information/
- Groups>Heart Rhythm Conditions>Need help to lower high cholesterol & high triglycerides https://connect.mayoclinic.org/discussion/need-help-for-high-cholesterol-222-high-triglycerides-217

You might also be interested in:
- Statin side effects: Weigh the benefits and risks https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013

@mayofeb2020, I want to include you in this message.
@ess77, I incorrectly included you here. I am sorry for the inconvenience. Rosemary

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Webinar from National Kidney Foundation

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https://www.kidney.org/content/flu-covid-19-webinar-facebook-live

Monday, January 11am Register today

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What are mRNA vaccines and how do they work?
Are the COVID-19 vaccines safe for kidney patients?

About Dr. Joseph Vassalotti
Dr. Vassalotti is the Chief Medical Officer of the National Kidney Foundation and Clinical Professor of Medicine in the Division of Nephrology, at Icahn School of Medicine at Mount Sinai. He received his medical degree with Distinction in Research from the SUNY Stony Brook School of Medicine and completed an Internal Medicine Residency and Nephrology Fellowship at the Johns Hopkins Hospital.

For information about COVID-19 and kidney disease, visit kidney.org/coronavirus.

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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

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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Oops, Ginger! I'm allergic to bees, too. Got the Maderno vaccine last Tuesday. No side effects.....maybe it's the Phizer that's the culprit...or maybe I'm not allergic anymore....or maybe???There's so much we don't know, but I'm fine and making antibodies, I believe!
Blessings, Eliabeth

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@rosemarya

@ess77, @contentandwell, @ga29

This is an important topic, one that many members are also interested in. However, it is going to get lost in this discussion about COVID-19 vaccines. I did some searching, and I found some discussions where this topic will be more visible to others with similar experiences. (Click on the blue link)

- Groups>Aging Well>important information about statins - https://connect.mayoclinic.org/discussion/important-information/
- Groups>Heart Rhythm Conditions>Need help to lower high cholesterol & high triglycerides https://connect.mayoclinic.org/discussion/need-help-for-high-cholesterol-222-high-triglycerides-217

You might also be interested in:
- Statin side effects: Weigh the benefits and risks https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statin-side-effects/art-20046013

@mayofeb2020, I want to include you in this message.
@ess77, I incorrectly included you here. I am sorry for the inconvenience. Rosemary

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Rosemary, what topic did you move and to where? I'm not on cholsterol or blood condition or statin side effects. Never been on those sites. Was was the discussion about? Where can I find it? Thanks for the help. Elizabeth

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@ess77

Merry, after I'm over this nonsense, I will. I have an appt in 4 weeks and to call him if not better. I think, if not better, I'll go to Mayo hospital for ck. I don't want to play with this and need to be sure I'm ok. Do need to figure out who to see at Mayo for this, tho.
Thanks for your input. Be safe and many blessings. Elizabeth

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@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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@ess77

Rosemary, what topic did you move and to where? I'm not on cholsterol or blood condition or statin side effects. Never been on those sites. Was was the discussion about? Where can I find it? Thanks for the help. Elizabeth

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I don't think I have ever got a doctor on Portal. I get the coordinator who talks to the doctor and communicates back.

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@ess77

JK, thank you for your message. My PCP does respond to my portal messages, most of which are not urgent, naturally. In this cae, as I couldn't reach him I did need his advice, certainly before closing the office. I got a call re the portal the next day, after getting an VI from the Crucial Care. And, saw him at the Friday appt.

This is a very good doctor. A good diagnostician.....He's been my PCP for over 20 years, so he knows me well and has been totally frustrated at times with my crazy health issues that are many and weird....autoimmune, etc. I do not want to leave him, but I must now if I can't get to him when I need him.

I'm sending him a message today via portal and let him know more re the phone calls and difficulty getting an answer re this situation.I think a lot of the problem now is that I am seeing everyone else at Mayo. I won't go to any of the specialists his offices uses, only Mayo. I can see some change in attitude with a couple of office staff, and with him. I can't stand the thought of a new PCP!

Thanks again, JK, and blessings to you!

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@ess77 I went through something similar with my PCP. His office often did not respond to portal messages as quickly as I would have liked, one time I sent a message and he apparently was on vacation. His office didn't bother to let me know that it would be a while before he would be back, which I think they should have. The final straw though was when he let my bones fall through the cracks. He didn't order a DEXA for me for five years after having a DEXA showing osteopenia. I had a minor hip fracture which made me ask him if I should have a DEXA. Sure enough, I was very overdue so he ordered one and I have advanced osteoporosis. His excuses for not ordering a DEXA were very flimsy. Still, it was hard to leave him because I had been going to him for over 5 years and we had built up a rapport. I actually miss him! My new PCP is highly regarded but I don't feel the bond with her that I did with him. It really is hard to break in a new PCP! I hope when you find one that you like him/her.

I also do not go to the specialists they want to refer me to, I had my liver transplant at Mass General and I go there for everything that requires a specialist now.
JK

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@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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@keggebraaten @ess77 I suspect all transplant centers have a 24/7 phone number. The last thing they want is for something to go unanswered if a patient has a real problem. I know Mass General has the same as what you describe that Mayo has. I did use it once, I forget what for, but they are very responsive.

The local hospitals are unfortunately not as responsive. Many of them have a message to go to Urgent Care of the ER if you have a problem.

@jerrynord I have had almost every doctor call me at times in response to a portal message! Certainly not for every message, but I think they sometimes feel they can field the question better than someone else in the office. One of my endocrinologists called recently and we conversed for about 20 minutes. I felt that was really above and beyond what I expected.
JK

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@contentandwell

@keggebraaten @ess77 I suspect all transplant centers have a 24/7 phone number. The last thing they want is for something to go unanswered if a patient has a real problem. I know Mass General has the same as what you describe that Mayo has. I did use it once, I forget what for, but they are very responsive.

The local hospitals are unfortunately not as responsive. Many of them have a message to go to Urgent Care of the ER if you have a problem.

@jerrynord I have had almost every doctor call me at times in response to a portal message! Certainly not for every message, but I think they sometimes feel they can field the question better than someone else in the office. One of my endocrinologists called recently and we conversed for about 20 minutes. I felt that was really above and beyond what I expected.
JK

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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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