1. < Visiting Mayo Clinic

First Time and Terrified

Posted by leahknit @leahknit, Oct 22, 2017

Hi my name is Leah and I will be making the journey for the 1st time in a few weeks. I have been battling a pain in my brain since July and have no feeling in my hand and feet as well as many other painful issues. I have spent many weeks in and out of hospital and been diagnosed many times then told they were wrong. I am in so much pain every min of everyday if I could I would live in a hospital for pain management. I am terrified of coming from NY and once again being told they can't fix me, Not to mention just the thought of travel. So I don't know what I'm looking for in this post but if there are any miracle stories out there please let me know. I need my life back please.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 24, 2017
In reply to @rosemarya "@leahknit, I see that you will be a first time visitor to Mayo. Do you have..." + (show)
@rosemarya

@leahknit, I see that you will be a first time visitor to Mayo. Do you have any questions about navigating the Mayo Campus that we can help you with?
Rosemary

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@leahknit, This is a good question. As @waterboy has explained so well, your assigned doctors are able to consult and work with specialists in other areas. You may or may not actually 'see' them but you can be assured that other specialists will be part of your evaluations and testing. Don't be surprised or frightened if your schedule actually changes, or has additional appointments/tests added as the day progresses.

I recommend that you and your husband take a written list of your questions.

The Mayo complex is actually easy to navigate, and there are help desks, and volunteers available and eager to assist.
Rosemary

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@parkerm | @parkermary | Oct 24, 2017
In reply to @rosemarya "@leahknit, Hi and welcome to Mayo Connect. I have my own miracle story to share. I..." + (show)
@rosemarya

@leahknit, Hi and welcome to Mayo Connect. I have my own miracle story to share.
I was flown out of ICU to Mayo Rochester (760 miles from home) With acute kidney failure along with liver complications, I no longer qualified for a transplant at home. Hospice Care was being discussed by the ICU team, but my transplant team arranged for my to be flown to Mayo. When I arrived, they took complete control of my situation. They work as a team. They treat everyone as a unique individual with unique needs. They care about their patients. They took care of my complications, and I qualified to be listed for a transplant, They carefully monitored me during my waiting time.
I did get my liver and kidney there 8 years ago, They gave me my life back. Hope is alive at Mayo.
Rosemary

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Hi Leah- Never think that your concerns or problems are silly. As a friend of mine says, "there are minor illnesses which is what everyone else has, then there are major illnesses which is what I have." LOL. Seriously though sometimes optimism can be difficult to find but do your best to believe you too will have a good outcome. #keepupthegoodfight

REPLY
leahknit | @leahknit | Oct 24, 2017
In reply to @waterboy "One of the really unique and interesting things about the downtown campus is the "subway" under..." + (show)
@waterboy

One of the really unique and interesting things about the downtown campus is the "subway" under the streets. If it is 30 below zero, or over 100 you can move around to different buildings, shops, and even hotels you can be comfortable walking, or being pushed. The Clinic is 18 stories and cover most of a city block. For the size of the city.... 114,000 Mayo employs about 33,000..... they do almost 1300 blood draws a day.

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Oh this is great to know!

REPLY
leahknit | @leahknit | Oct 24, 2017
In reply to @rosemarya "@leahknit, I see that you will be a first time visitor to Mayo. Do you have..." + (show)
@rosemarya

@leahknit, I see that you will be a first time visitor to Mayo. Do you have any questions about navigating the Mayo Campus that we can help you with?
Rosemary

Jump to this post

A very dear friend of mine who also is my Ob and delivered my 2nd boy is visiting me tonight to work on a check list of questions for the dr's that I might not think of. So I am excited about that.

REPLY
Jamie Olson | @jamienolson | Oct 27, 2017
In reply to @waterboy "One of the really unique and interesting things about the downtown campus is the "subway" under..." + (show)
@waterboy

One of the really unique and interesting things about the downtown campus is the "subway" under the streets. If it is 30 below zero, or over 100 you can move around to different buildings, shops, and even hotels you can be comfortable walking, or being pushed. The Clinic is 18 stories and cover most of a city block. For the size of the city.... 114,000 Mayo employs about 33,000..... they do almost 1300 blood draws a day.

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our very "well oiled machine". After 17 years of working here, it's still amazing to me.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 27, 2017
In reply to @waterboy "One of the really unique and interesting things about the downtown campus is the "subway" under..." + (show)
@waterboy

One of the really unique and interesting things about the downtown campus is the "subway" under the streets. If it is 30 below zero, or over 100 you can move around to different buildings, shops, and even hotels you can be comfortable walking, or being pushed. The Clinic is 18 stories and cover most of a city block. For the size of the city.... 114,000 Mayo employs about 33,000..... they do almost 1300 blood draws a day.

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@jamienolson - Jamie, I often wonder if the locals take a lot of these amazing Mayo wonders for granted. For us out-of-towners, it is difficult to describe to our hometown friends! Mayo has to be experienced to be believed! Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 20, 2017

@leahknit, I want you to know that I am thinking of you. So try to visualize this message as a "Thinking of You Card". I hope that you are finding some answers to your health concerns.
Rosemary

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vsinn2000 | @vsinn2000 | Nov 25, 2017

Leah,
I made my first trip just this week. It's overwhelming if you look online but when you get there it's not so bad. The signs and directions are great. Everyone we dealt with was very helpful and polite. I have a horrible phobia for new places and i could even follow the signs. Believe me, you'll be pleasantly suprised. The shuttle drops you off at the entrance right by the elevator and the information desk. We drove but walked through that area. They were very good about announcing all the different shuttles, making sure everyone had the right one. I hope you find your answers! I'm glad you keep looking for a solution, it's not the easiest choice but don't give up!
Best of luck,
Vicky

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 28, 2017
In reply to @vsinn2000 "Leah, I made my first trip just this week. It's overwhelming if you look online but..." + (show)
@vsinn2000

Leah,
I made my first trip just this week. It's overwhelming if you look online but when you get there it's not so bad. The signs and directions are great. Everyone we dealt with was very helpful and polite. I have a horrible phobia for new places and i could even follow the signs. Believe me, you'll be pleasantly suprised. The shuttle drops you off at the entrance right by the elevator and the information desk. We drove but walked through that area. They were very good about announcing all the different shuttles, making sure everyone had the right one. I hope you find your answers! I'm glad you keep looking for a solution, it's not the easiest choice but don't give up!
Best of luck,
Vicky

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Vicky, did you use the Concierge Services while you were at Mayo Clinic? Might be useful if you have a future visit.

Mayo Clinic in Rochester has Concierge Services to help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit to make your visit smooth and less stressful!
And it’s free.

Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

REPLY
vsinn2000 | @vsinn2000 | Nov 28, 2017

Thanks Colleen! Had some really great conversations with cancer center and hope lodge today. I'll put them on my list for tomorrow! Have a great evening!
Vicky

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