Mayo Educational Visit with Post COVID Clinic

Posted by baker00l @baker00l, Jan 4, 2022

Has anyone attended the Mayo Educational Visit with other COVID survivors? It is scheduled from 8:15-5 for two days straight. Are there any breaks? As a long hauler I am concerned about lasting that long without a rest.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@lorikotto

How does one access this opportunity?

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@lorikotto , I check out this page for more information about post covid recovery options at Mayo
https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/
Laurie

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@tolson24

What are the 4 or 6 things to try?

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Hi! Here are the 4 simple things that doctors recommended that I change and what they improved:
1) Wear a fitness watch - I keep a log of the steps I take each day and if my sleep is good/fair/poor. This has allowed me to see patterns in my peaks and crashes.I am too fatigued to exercise, but was amazed that I could still see patterns even with just walking around the house.
2) ALWAYS take food (even if just a few nuts or crackers) with ANY medication that I ingest throughout the day. This has completely eliminated any ulcer flare-ups and stomach pains.
3) Stop drinking anything (even water) at least 2 hours before bedtime. This has resulted in less trips to the potty at night and has improved my sleep immensely.
4) NOTE: This one will need to be discussed with your own physician ** Reduce over the counter sleep meds and replace with melatonin or prescribed sleep medication. Between items number 3 and 4, I am now regularly getting 1 hour of additional restorative sleep at night.

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@colleenyoung

Good question, @baker00l. With fatigue being one of the most common symptoms of Post-COVID Syndrome, I can imagine that you would be concerned about the length of the days. Here's more information about what you can expect at the classes next week and beyond.

You will take part in 2 small group sessions virtually with a nurse, healthy living program staff, and other participants who have post-COVID syndrome. There are 4 hour-long sessions on each day with breaks in between. You'll learn about post-COVID syndrome and how to manage symptoms, as well as be able to share your experiences with each other.

At the end of the 2 days, you will be connected with a Wellness Coach for one-on-one coaching sessions for 12 weeks. A nurse will also stay connected with you for virtual follow up visits alongside the coaching sessions.

@shmorri4424 @ldropps may be able to add insight from their experiences at the clinic.

Baker, I'll be very interested to hear your experiences with the program. I hope you'll return to tell others. Please let fellow participants know that they can also continue to connect with you and others here on Mayo Clinic Connect's Post-COVID Recovery support group.

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We think my son (16) may have long haulers. How do I find out if he can do this clinic/sessions?

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@baker00l

Hi! Here are the 4 simple things that doctors recommended that I change and what they improved:
1) Wear a fitness watch - I keep a log of the steps I take each day and if my sleep is good/fair/poor. This has allowed me to see patterns in my peaks and crashes.I am too fatigued to exercise, but was amazed that I could still see patterns even with just walking around the house.
2) ALWAYS take food (even if just a few nuts or crackers) with ANY medication that I ingest throughout the day. This has completely eliminated any ulcer flare-ups and stomach pains.
3) Stop drinking anything (even water) at least 2 hours before bedtime. This has resulted in less trips to the potty at night and has improved my sleep immensely.
4) NOTE: This one will need to be discussed with your own physician ** Reduce over the counter sleep meds and replace with melatonin or prescribed sleep medication. Between items number 3 and 4, I am now regularly getting 1 hour of additional restorative sleep at night.

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Thank you. As for number 4, I do not take a sleep medication as I struggle terribly with chronic fatigue and can sleep anywhere, anytime, for long times (days at times after minimal exertion or stimuli) but it must not be restful sleep because it is never enough or ever feel rested and energetic so not sure except keep trying to find a good flow and knowledge of how many spoons to use during the day to avoid “crashing” which I have yet to balance well as it appears to be A moving target and low threshold to exertion?????

REPLY
@colleenyoung

Good question, @baker00l. With fatigue being one of the most common symptoms of Post-COVID Syndrome, I can imagine that you would be concerned about the length of the days. Here's more information about what you can expect at the classes next week and beyond.

You will take part in 2 small group sessions virtually with a nurse, healthy living program staff, and other participants who have post-COVID syndrome. There are 4 hour-long sessions on each day with breaks in between. You'll learn about post-COVID syndrome and how to manage symptoms, as well as be able to share your experiences with each other.

At the end of the 2 days, you will be connected with a Wellness Coach for one-on-one coaching sessions for 12 weeks. A nurse will also stay connected with you for virtual follow up visits alongside the coaching sessions.

@shmorri4424 @ldropps may be able to add insight from their experiences at the clinic.

Baker, I'll be very interested to hear your experiences with the program. I hope you'll return to tell others. Please let fellow participants know that they can also continue to connect with you and others here on Mayo Clinic Connect's Post-COVID Recovery support group.

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I hope to gain knowledge as well. I am currently trying to get referral approved at this time first work comp denied now my medical insurance is likely to deny due to no out of network coverage. And info to help get some quality of life back would be a miracle

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@tolson24

Thank you. As for number 4, I do not take a sleep medication as I struggle terribly with chronic fatigue and can sleep anywhere, anytime, for long times (days at times after minimal exertion or stimuli) but it must not be restful sleep because it is never enough or ever feel rested and energetic so not sure except keep trying to find a good flow and knowledge of how many spoons to use during the day to avoid “crashing” which I have yet to balance well as it appears to be A moving target and low threshold to exertion?????

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Yes, I also have a moving target on exertion. That is why I use the fitness watch. Even with ups and downs I can better judge when I can do extra and when I have to clear everything out of my schedule.

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@baker00l

Yes, I also have a moving target on exertion. That is why I use the fitness watch. Even with ups and downs I can better judge when I can do extra and when I have to clear everything out of my schedule.

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I am looking into Fitbit 5 charge ??? Is that what you have or are familiar enough with to see if that is similar to what you are finding helpful? I am really struggling. 21 months out with also chronic joint pain for 21 months but awhile back and progressing hot feet & and neuropathy (assuming) on both hands and worse in feet. Some days recently used a walker for about two weeks to lessen the lead on feet just to jet around house (was a super healthy vibrant ever-ready bunny 55 year-old (127-130 lbs) and have no quality of life. I am worse now than a year ago or even 3 months ago and cannot believe stuff just keeps coming.

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@baker00l

Hi! Thanks for your response! This is an on-site class, correct? My schedule says in the Mayo building? Would you please clarify what is virtual?

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The virtual program is an extension of the inperson program as Mayo experts need to evaluate every person to see if they find anything unusual that warrants treatment before you advance to the virtual program for treatment.

You should confirm, @baker00l. If your information says that you should report in person to the Mayo building, then that is likely correct. You may wish to contact the coordinator through the Mayo Clinic patient portal and app. Download it here: https://www.mayoclinic.org/apps/mayo-clinic

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@ebergfeld, I'm looking into your question regarding confirmation of COVID diagnosis as an acceptance criteria.

@lorikotto @suestorry29, you can learn more about Mayo Clinic's Post-COVID Recovery Clinic here: https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/

To enquire about eligibility for the Post-COVID Recovery Clinic, criteria, insurance, and more, please contact Mayo Clinic through the Appointments Office http://mayocl.in/1mtmR63

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@tolson24

I am looking into Fitbit 5 charge ??? Is that what you have or are familiar enough with to see if that is similar to what you are finding helpful? I am really struggling. 21 months out with also chronic joint pain for 21 months but awhile back and progressing hot feet & and neuropathy (assuming) on both hands and worse in feet. Some days recently used a walker for about two weeks to lessen the lead on feet just to jet around house (was a super healthy vibrant ever-ready bunny 55 year-old (127-130 lbs) and have no quality of life. I am worse now than a year ago or even 3 months ago and cannot believe stuff just keeps coming.

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I just received the Fitbit Inspire 2 which now comes with 1 year free premium membership. I am impressed with both the watch and the Premium membership so far. I will help you figure out whichever fitness watch you get.

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