1. < Kidney & Bladder

Kidney Disease: Does treatment from Mayo produce better outcome?

Posted by codered032 @codered032, Nov 23, 2021

Hello all, I have noticed that some have sought treatment at MAYO Clinic, especially when their symptoms flares up. I live in Ohio and have scheduled an initial appointment at Mayo in Jacksonville, for MCD. My question; Are the treatment protocols and treatment outcomes from Mayo better than other major universities? My last lab results were good and if my treatment protocols aren’t going to change much I am wondering if the expense will be worth it. Thanks for sharing

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 27, 2021
In reply to @codered032 "My first appears is in person. I am hoping that as many as possible can be..." + (show)
@codered032

My first appears is in person. I am hoping that as many as possible can be virtual. I live in Ohio but will travel if the treatment is positive

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It's common for the first visit to be in person for a full and thorough consultation. Virtual visits are more possible for follow up. You may appreciate reading some of these discussions as you prepare for your first visit:

- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
- What can I expect at an Evaluation Appointment at Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

There are other discussions about travelling to Mayo Clinic, accommodation recommendations, things to do between appointments and more. See tips from fellow Mayo patients in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

If you have questions that aren't answered, feel free to ask.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 27, 2021
In reply to @engelee "I have been treated for twenty years with Dr Frank in Urology at Mayo R and..." + (show)
@engelee

I have been treated for twenty years with Dr Frank in Urology at Mayo R and was told I was longest living in Mayo’s history with my condition. I’m 74

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@engelee Congratulations on having such good results! I'm sure that Dr. Frank is equally proud of your health success story.

You must feel very grateful. Did you begin your treatment at Mayo or did you start with another doctor?

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1 reply
engelee | @engelee | Nov 27, 2021
In reply to @hopeful33250 "@engelee Congratulations on having such good results! I'm sure that Dr. Frank is equally proud of..." + (show)
@hopeful33250

@engelee Congratulations on having such good results! I'm sure that Dr. Frank is equally proud of your health success story.

You must feel very grateful. Did you begin your treatment at Mayo or did you start with another doctor?

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I started at Henry Ford Hosp . In Detroit, but when MD retired went to Cleveland Clinic for annual exam——nothing has compared with Mayo—I hope when the time comes I’m with people I trust 100% at Mayo.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 27, 2021
In reply to @engelee "I started at Henry Ford Hosp . In Detroit, but when MD retired went to Cleveland..." + (show)
@engelee

I started at Henry Ford Hosp . In Detroit, but when MD retired went to Cleveland Clinic for annual exam——nothing has compared with Mayo—I hope when the time comes I’m with people I trust 100% at Mayo.

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@enbelee, It sounds like you are from Michigan, as I am. I'm also with Ford, I've been to Cleveland Clinic for a specialty surgery and I also go to the University of Michigan.

Do you drive to Mayo in Rochester? It is a long drive, but you must feel it is worth it.

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engelee | @engelee | Nov 27, 2021

I am from southeast mich. -a town called Monroe ( I so miss growing up on a farm). We would vacation up near Allen’s every summer. My Dad was MD and graduated from Wayne State. Henry Ford was good hospital.
For years we drove in 1 or2 days to Rochester (wonderful for antique collecting). Now we fly to Rochester with one stop in Minneapolis.. Much more convenient.

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codered032 | @codered032 | Nov 30, 2021
In reply to @gingerw "@colleenyoung Thank you for tagging me in to this conversation! @codered032 I have been a kidney..." + (show)
@gingerw

@colleenyoung Thank you for tagging me in to this conversation!

@codered032 I have been a kidney patient for a number of years, and have had several nephrologists. What I have to say is only my experience. You have to feel confident that the medical team working with you has your best interest at heart. Now, that may come from a teaching hospital, a university-connected hospital, or a well-known medical institute. My first nephrologist was connected to the HMO I was a patient in, and he was really good, not worrying if he stepped outside of the guidelines they gave him to follow. When he left the system to go on his own, I followed him. Eventually I changed to another nephrologist who was also very good, and helped me at the start of my current health issues. When I moved 800 miles, the next one was not as interested in my complicated case, and I switched to another dr in his same practice. She is my current dr, and shares my vision for this case I have.

I am not a patient of Mayo Clinic. My oncologist was trained and did his residency at Mayo Clinic [Rochester, MN]. During my years as a patient, what was important was to research your medical team, "interview" them if you feel the need to [to see if they fit what your vision is for care], be an active participant in your own healthcare, and speak up when you feel you have something to address.

Good luck, and I'll be waiting to hear what you have to share with me!
Ginger

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Thank you for sharing your experience with choosing a doctor. I am no longer connecting with my current doctor and will be meeting with a new doctor at Ohio State University. I have reviewed his educational background and he has posted a letter of introduction and his medical goals for treating renal diseases. I pray that this works well for both of us. He is a lot closer to my home than Mayo. Again I appreciate your sharing and support.

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codered032 | @codered032 | Nov 30, 2021

I met with a new nephrologist today at Ohio State University. Thanks to all of you who supported me with your experience and suggestions for choosing a new provider. I was well prepared and so was he. I was able to share MyChart with him prior to my appointment, and he and his resident in training reviewed my treatment history in detail. They knew about all of my medical history, prior surgeries, prior and current medications, my lab history etc. They (he and his resident in training) were interested in getting to know me as a person; what did I do before I retired and what my current life style is like now. They talked to me not at me.They examed me for current symptoms of MCD. According to my current labs and symptoms he felt like I was in remission, but order new labs before making any medication changes. I was well prepared also. I researched his education and his medical research background. I asked about his experience with treating MCD and how we as a team could help me meet and maintain my medical maximum improvement. I explained that I might be interested in current research options at OSU. We discussed current and long term treatment options.. My current appointment lasted approximately two hours! All of questions were answered to my satisfaction. He is located 92miles from my home, a lot closer than Mayo. He also agreed to some telemedicine appointments. Since the current treatment options and outcomes for MCD are basically the same I have decided to cancel my appointment with Mayo and receive treatment at OSU for now. Thanks to all who responded to my question, Are the treatment out better at Mayo Clinic? If I lived closer to Jacksonville, based on their treatment model, that would be my first choice.

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 30, 2021
In reply to @codered032 "I met with a new nephrologist today at Ohio State University. Thanks to all of you..." + (show)
@codered032

I met with a new nephrologist today at Ohio State University. Thanks to all of you who supported me with your experience and suggestions for choosing a new provider. I was well prepared and so was he. I was able to share MyChart with him prior to my appointment, and he and his resident in training reviewed my treatment history in detail. They knew about all of my medical history, prior surgeries, prior and current medications, my lab history etc. They (he and his resident in training) were interested in getting to know me as a person; what did I do before I retired and what my current life style is like now. They talked to me not at me.They examed me for current symptoms of MCD. According to my current labs and symptoms he felt like I was in remission, but order new labs before making any medication changes. I was well prepared also. I researched his education and his medical research background. I asked about his experience with treating MCD and how we as a team could help me meet and maintain my medical maximum improvement. I explained that I might be interested in current research options at OSU. We discussed current and long term treatment options.. My current appointment lasted approximately two hours! All of questions were answered to my satisfaction. He is located 92miles from my home, a lot closer than Mayo. He also agreed to some telemedicine appointments. Since the current treatment options and outcomes for MCD are basically the same I have decided to cancel my appointment with Mayo and receive treatment at OSU for now. Thanks to all who responded to my question, Are the treatment out better at Mayo Clinic? If I lived closer to Jacksonville, based on their treatment model, that would be my first choice.

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@codered032 Gosh, it is great to read your post! So glad you were comfortable with this new-to-you doctor! Didn't it make you feel valued and glad you took the matter in hand to search out options? Sounds like it will be a good fit, and I look forward to hearing more from you!
Ginger

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1 reply
kidneycancer2021 | @kidneycancer2021 | Dec 1, 2021

Not sure I am in the right blog but was wanting to k ow if any one out here has kidney cancer and had went to the mayo in roadchester for I am supposed to be having surgery shedueld between now and Christmas and was wondering what to expect for I have no idea

REPLY
rkndvm | @rkndvm | Dec 1, 2021
In reply to @codered032 "I met with a new nephrologist today at Ohio State University. Thanks to all of you..." + (show)
@codered032

I met with a new nephrologist today at Ohio State University. Thanks to all of you who supported me with your experience and suggestions for choosing a new provider. I was well prepared and so was he. I was able to share MyChart with him prior to my appointment, and he and his resident in training reviewed my treatment history in detail. They knew about all of my medical history, prior surgeries, prior and current medications, my lab history etc. They (he and his resident in training) were interested in getting to know me as a person; what did I do before I retired and what my current life style is like now. They talked to me not at me.They examed me for current symptoms of MCD. According to my current labs and symptoms he felt like I was in remission, but order new labs before making any medication changes. I was well prepared also. I researched his education and his medical research background. I asked about his experience with treating MCD and how we as a team could help me meet and maintain my medical maximum improvement. I explained that I might be interested in current research options at OSU. We discussed current and long term treatment options.. My current appointment lasted approximately two hours! All of questions were answered to my satisfaction. He is located 92miles from my home, a lot closer than Mayo. He also agreed to some telemedicine appointments. Since the current treatment options and outcomes for MCD are basically the same I have decided to cancel my appointment with Mayo and receive treatment at OSU for now. Thanks to all who responded to my question, Are the treatment out better at Mayo Clinic? If I lived closer to Jacksonville, based on their treatment model, that would be my first choice.

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I am so happy for you! Sounds like a great fit to me! Allowing time for questions and being interested in you as a person are top on my list. 92 miles seems reasonable and telemedicine appointments will be a great winter option. Please keep us posted regarding labs and possible treatment changes.

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