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

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 What a miserable situation you have been in. Doctors who don't respond to portal messages, particularly an important one like this, need to be brought to account. I like to use portals because then I know the doctor sees exactly what I have said, not a transposed message from the phone. For something like this though I would definitely try to get through on the phone.

It's great to have the backup of Mayo. I feel the same, I go to Mass General for almost everything except my PCP and I am confident of how they will handle things.

I hope you get this resolved very quickly and are back on the road to good health.
JK

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@ess77. I'm sorry for your ordeal. I agree with @contentandwell, using the portal will also document your correspondence with your doctor and his response. I changed my PCP this year because I find the old one uncaring. I felt that he's just going through the motion. At my last check up I found out that he didn't even know who my cardiologist is, and he's the one who made the referral! My new doctor spent almost an hour with me( really unheard of) going through my medical history and meds. While I was there my cardiologist's office called because I called them earlier, this doctor talked to them and said he will email my cardiologist about my visit and new med which both doctors agreed on. I felt really good about this change.
I hope you will get your issues resolved in a timely manner. Take care and stay safe.

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@mayofeb2020

@ess77. I'm sorry for your ordeal. I agree with @contentandwell, using the portal will also document your correspondence with your doctor and his response. I changed my PCP this year because I find the old one uncaring. I felt that he's just going through the motion. At my last check up I found out that he didn't even know who my cardiologist is, and he's the one who made the referral! My new doctor spent almost an hour with me( really unheard of) going through my medical history and meds. While I was there my cardiologist's office called because I called them earlier, this doctor talked to them and said he will email my cardiologist about my visit and new med which both doctors agreed on. I felt really good about this change.
I hope you will get your issues resolved in a timely manner. Take care and stay safe.

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@mayofeb2020 That's great that you now have a PCP who is so caring. I recently changed PCPs because my old one had let me fall through the cracks a couple of times, most recently on osteoporosis, which has become a very serious situation for me because it had been neglected. He was extremely caring, and usually very diligent about immediate problems though, so it was a difficult decision for me.

The doctor I chose spent at least an hour with me on my first appointment and she is highly regarded, but she seems sort of cold and not nearly as caring. I could go back to my old doctor, after I switched he called and we talked for a half-hour and he said if I changed my mind he would welcome me back as a patient. I'm afraid he might let something else important fall through the cracks though.
JK

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@contentandwell

@mayofeb2020 That's great that you now have a PCP who is so caring. I recently changed PCPs because my old one had let me fall through the cracks a couple of times, most recently on osteoporosis, which has become a very serious situation for me because it had been neglected. He was extremely caring, and usually very diligent about immediate problems though, so it was a difficult decision for me.

The doctor I chose spent at least an hour with me on my first appointment and she is highly regarded, but she seems sort of cold and not nearly as caring. I could go back to my old doctor, after I switched he called and we talked for a half-hour and he said if I changed my mind he would welcome me back as a patient. I'm afraid he might let something else important fall through the cracks though.
JK

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@contentandwell. I can only hope this new doctor is good for me. There's no guarantee. I have only seen him once and so far I am impressed. I'm going back in a month. Crossing my fingers. There are a couple of things that my new doctor questions me about. Wondered why they were not done with my old doctor...talk about falling through the cracks. One thing that I found interesting is that he told me some drugs work better for different races, I'm taking Crestor which was invented by Japanese, and being Asian myself, it would work better than other cholesterol med. He said Asians are more sensitive to drugs. I and my daughter who is half Asian are inclined that way.

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@mayofeb2020

@contentandwell. I can only hope this new doctor is good for me. There's no guarantee. I have only seen him once and so far I am impressed. I'm going back in a month. Crossing my fingers. There are a couple of things that my new doctor questions me about. Wondered why they were not done with my old doctor...talk about falling through the cracks. One thing that I found interesting is that he told me some drugs work better for different races, I'm taking Crestor which was invented by Japanese, and being Asian myself, it would work better than other cholesterol med. He said Asians are more sensitive to drugs. I and my daughter who is half Asian are inclined that way.

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@mayofeb2020 I’m not Asian but I too am very sensitive to many drugs. This has happened as I’ve aged.

I’m taking pravastatin, and it causes a lot of leg pain. My doctor halved my dosage but I’m still having pain. I’ve checked it online and it is less apt to cause that side-effect than other statins.

I feel like like I’m in a “catch 22” because exercise is impossible on many days but I need to take a cholesterol medication. I need to exercise too.
JK

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@contentandwell

@mayofeb2020 I’m not Asian but I too am very sensitive to many drugs. This has happened as I’ve aged.

I’m taking pravastatin, and it causes a lot of leg pain. My doctor halved my dosage but I’m still having pain. I’ve checked it online and it is less apt to cause that side-effect than other statins.

I feel like like I’m in a “catch 22” because exercise is impossible on many days but I need to take a cholesterol medication. I need to exercise too.
JK

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@contentandwell. I can't agree more. My cardiologist said I need "conditioning", it's easier than done with pain from my back to my hip down to my legs. It takes alot of effort to do my two walks. He did recommended taking CO Q10 for muscle pain and my heart. 200 mg a day. Crestor is good in that even a low dosage achieves great result. When I was on 5 mg every day, my LDL went down to 66. I took a couple of months off and the numbers came back up. So starting last November I'm on 5mg every other day. I would like to take a lipid test in March to see if this reduce dosage works.

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@mayofeb2020

@contentandwell. I can't agree more. My cardiologist said I need "conditioning", it's easier than done with pain from my back to my hip down to my legs. It takes alot of effort to do my two walks. He did recommended taking CO Q10 for muscle pain and my heart. 200 mg a day. Crestor is good in that even a low dosage achieves great result. When I was on 5 mg every day, my LDL went down to 66. I took a couple of months off and the numbers came back up. So starting last November I'm on 5mg every other day. I would like to take a lipid test in March to see if this reduce dosage works.

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@mayofeb2020 I find I’m in the most pain in the morning which is probably because I take my pravastatin at bedtime. As the day progresses the pain gets much better.
Today I finally exercised for an hour starting at about 10:00 PM!
JK

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@contentandwell

@mayofeb2020 I find I’m in the most pain in the morning which is probably because I take my pravastatin at bedtime. As the day progresses the pain gets much better.
Today I finally exercised for an hour starting at about 10:00 PM!
JK

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I too am on a statin for my cholesterol, my pcp prescribed atorvastatin, 10 mg. and because I have so much pain already from my lower back I was afraid of the side effects. He suggested I take every other day or two, which I did. My cholesterol labwork is much better, I am happy to report! It has been over 200 overall for years, actually went to 250+. I am not getting any additional pain either.
I did recently get a SPECT scan for my lumbar area a few weeks ago, and an incidental finding says I have moderate calcified atherosclerosis, the CT scan says atherosclerotic disease of the abdominal aorta. I am assuming this means I should see a cardiologist soon, is my taking this statin drug enough?

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@ga29

I too am on a statin for my cholesterol, my pcp prescribed atorvastatin, 10 mg. and because I have so much pain already from my lower back I was afraid of the side effects. He suggested I take every other day or two, which I did. My cholesterol labwork is much better, I am happy to report! It has been over 200 overall for years, actually went to 250+. I am not getting any additional pain either.
I did recently get a SPECT scan for my lumbar area a few weeks ago, and an incidental finding says I have moderate calcified atherosclerosis, the CT scan says atherosclerotic disease of the abdominal aorta. I am assuming this means I should see a cardiologist soon, is my taking this statin drug enough?

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Thanks, @ga29 I want to continue to monitor the effects this week doing exercise on days when I take it and on days when I don't take it. I just want to be certain that my very and aching legs are not simply a result of exercise. If I can definitely determine that it is the statin, which I think it is, I will ask my doctor about going to every other day. That may be a better solution than halving the dose.
JK

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@contentandwell

@ess77 What a miserable situation you have been in. Doctors who don't respond to portal messages, particularly an important one like this, need to be brought to account. I like to use portals because then I know the doctor sees exactly what I have said, not a transposed message from the phone. For something like this though I would definitely try to get through on the phone.

It's great to have the backup of Mayo. I feel the same, I go to Mass General for almost everything except my PCP and I am confident of how they will handle things.

I hope you get this resolved very quickly and are back on the road to good health.
JK

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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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