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leahknit
@leahknit

Posts: 8
Joined: Oct 23, 2017

First Time and Terrified

Posted by @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.

REPLY

Leah, first don’t be scared… the unknown is more scary than the known. The Mayo Clinic Motto is “The needs of the patient above all other things.” This isn’t just a plaque, or a weather worn poster…. it is a living, breathing way of life at Mayo. Just remember one thing, health care is a two way street. You will get what you give…. the Drs. RNs PAs and techs need your assistance to give you the best possible care…. and they need your input to correct any problems along the way. From what I have read, you seem to understand that. There are volunteers all over, info desks, and help in all forms… use them that is why they are there. I made the decision to go to Mayo in Rochester and am so glad I did. My urology surgeon, Dr Husmann and his associate Dr. Joseph were wonderful through my surgery and recovery. I also have COPD and talked with a pulmonologist, Dr Patel, for a relatively short 10 min consult, the next day I noticed him and said hi. He stopped asked how I was feeling and wanted to know how my visit with Dr Husmann went the day before. I was blown away. All I know is I have been treated with respect and professionalism at Mayo, I know Charlie and William Mayo would be pleased. If you don’t get the same results, ask, ask, ask, and work with them…..THEY CARE.

@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

Hi Leah- I hope you are feeling more calm and confident after reading the replies from other Mayo patients. I do have a miracle story for you. Let me give you a little background first: I live in Alabama, a 17 hour drive from Rochester, Minnesota (but it has most certainly worth the multiple trips)!! I was born with a very rare bone disease. I had several surgeries as a child to correct some things. But as an adult I did not have a doctor to monitor or treat my condition because no one in my area knew anything about the disease. So fast forward to 5 years ago. I was in tremendous pain in my joints but especially my R ankle. I had seen the “best doctors” in Alabama and Georgia and my best option according to all of them was amputation. A relative of mine was familiar with Mayo and suggested it to me. What a blessing! I have since had complete ankle reconstruction that is nothing short of a miracle. I will not tell you that it has been easy traveling to and from, or that it was an easy, pain free surgery but I will tell you that I have so much confidence in and respect for the doctors and staff at Mayo. I have also had surgery on my left leg, undergone some cutting-edge technology to lengthen a bone in my right leg, received great care from cardiology, gastroenterology and podiatry. I will be making the trip again next month to see a neurologist because my evidence of my disease has now shown up in my skull. But I go with full expectation that Mayo will once again know the answers. Leah, I wish you the best and pray that your journey to wellness will be as successful as mine.

@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

@waterboy

Leah, first don’t be scared… the unknown is more scary than the known. The Mayo Clinic Motto is “The needs of the patient above all other things.” This isn’t just a plaque, or a weather worn poster…. it is a living, breathing way of life at Mayo. Just remember one thing, health care is a two way street. You will get what you give…. the Drs. RNs PAs and techs need your assistance to give you the best possible care…. and they need your input to correct any problems along the way. From what I have read, you seem to understand that. There are volunteers all over, info desks, and help in all forms… use them that is why they are there. I made the decision to go to Mayo in Rochester and am so glad I did. My urology surgeon, Dr Husmann and his associate Dr. Joseph were wonderful through my surgery and recovery. I also have COPD and talked with a pulmonologist, Dr Patel, for a relatively short 10 min consult, the next day I noticed him and said hi. He stopped asked how I was feeling and wanted to know how my visit with Dr Husmann went the day before. I was blown away. All I know is I have been treated with respect and professionalism at Mayo, I know Charlie and William Mayo would be pleased. If you don’t get the same results, ask, ask, ask, and work with them…..THEY CARE.

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Hi
and thank you so much for your words of advice, all of you. I printed out pictures of my kids and my doggies to show the dr’s and staff who I am fighting for and who need me so they can see the faces that matter to me the most. And I will remember its a two way street and I need to give info in order to receive it. And I promise I will ask ask ask ask and my husband will do the same. Its been a very hard painful confusing 1/2 year and I am just hoping not to be disappointed. Thank you for your time so very much!
Leah

Liked by dandl48

@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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You are so very brave.
Mine seams so silly in comparison. I am just a person that deals in black and white and so far my year has been so very grey. I know I need to be optimistic because to be honest thats how I would treat any friend of mine in this situation. I am just so afraid they won’t fix me….. and well I’m doomed to a life of undiagnosed pain. I need to be positive and you all with your amazing stories will get me there… Thank you!

@parkermary

Hi Leah- I hope you are feeling more calm and confident after reading the replies from other Mayo patients. I do have a miracle story for you. Let me give you a little background first: I live in Alabama, a 17 hour drive from Rochester, Minnesota (but it has most certainly worth the multiple trips)!! I was born with a very rare bone disease. I had several surgeries as a child to correct some things. But as an adult I did not have a doctor to monitor or treat my condition because no one in my area knew anything about the disease. So fast forward to 5 years ago. I was in tremendous pain in my joints but especially my R ankle. I had seen the “best doctors” in Alabama and Georgia and my best option according to all of them was amputation. A relative of mine was familiar with Mayo and suggested it to me. What a blessing! I have since had complete ankle reconstruction that is nothing short of a miracle. I will not tell you that it has been easy traveling to and from, or that it was an easy, pain free surgery but I will tell you that I have so much confidence in and respect for the doctors and staff at Mayo. I have also had surgery on my left leg, undergone some cutting-edge technology to lengthen a bone in my right leg, received great care from cardiology, gastroenterology and podiatry. I will be making the trip again next month to see a neurologist because my evidence of my disease has now shown up in my skull. But I go with full expectation that Mayo will once again know the answers. Leah, I wish you the best and pray that your journey to wellness will be as successful as mine.

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yes I am trying its hard. you al have such amazing stories! seriously! I know I can do this I am strong and I am hopeful and faithful

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.

@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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Did you find that you had one Dr or was there a team of Dr’s that worked on your case? I know I will see an internist and a neurologist after that it depends…

@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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They utilize health “teams” at Mayo. When I had my surgery I had a head Dr. and an associate Dr. with others….. LPN’s RN’s PA’s Tech’s. The other thing they left nothing to chance…. I was looked over, tested, and evaluated… even to the point of allergies…. I was years ago told, while in the Navy, I was allergic to Penicillin… Mayo tested me and told me that no longer exists. My team leader when in consult would explain something to me then ask “Did you understand that?”. My sister is recovering from Ovarian cancer surgery she had in Rochester. I sure hope your trip, care, and overall experience is of very high quality and very successful.

@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

@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

@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!

@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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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.

@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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