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

Interested in more discussions like this? Go to the Kidney & Bladder group.

@codered032, really good question to ask. Let me first direct you to some related questions where multiple members have shared their similar evaluations about where to get care (not necessarily kidney disease specific).
– Evaluating Care Models at Top Hospitals to Fit an Individual Patient https://connect.mayoclinic.org/discussion/evaluating-care-models-at-top-hospital-to-fit-an-individual-patient/
– Need Patients' Experience with Mayo Clinic. Is it worth it? https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/
– Comprehensive Collaborative Team Approach to Care https://connect.mayoclinic.org/discussion/comprehensive-collaborative-team-approach-to-care/

Allow me to bring a number of kidney patients into this discussion, some of whom have been to Mayo Clinic and others who haven't, like @zeppo @gingerw @lindes @kamama94 @predictable @basslakebabe19 @gaybinator @rosemarya @jim8086

Codered032, is your first consult with Mayo Clinic in person or virtual?

REPLY
@colleenyoung

@codered032, really good question to ask. Let me first direct you to some related questions where multiple members have shared their similar evaluations about where to get care (not necessarily kidney disease specific).
– Evaluating Care Models at Top Hospitals to Fit an Individual Patient https://connect.mayoclinic.org/discussion/evaluating-care-models-at-top-hospital-to-fit-an-individual-patient/
– Need Patients' Experience with Mayo Clinic. Is it worth it? https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/
– Comprehensive Collaborative Team Approach to Care https://connect.mayoclinic.org/discussion/comprehensive-collaborative-team-approach-to-care/

Allow me to bring a number of kidney patients into this discussion, some of whom have been to Mayo Clinic and others who haven't, like @zeppo @gingerw @lindes @kamama94 @predictable @basslakebabe19 @gaybinator @rosemarya @jim8086

Codered032, is your first consult with Mayo Clinic in person or virtual?

Jump to this post

@gaybinator Colleen, my husband passed away in his sleep on September 3, 2021. He had a PET scan one month earlier, and the cancer was in check. He had a tele-doctor meeting with nephrologist two days before. There was no indication that anything was different than any other day. God decided it was time to end his suffering.

Per your question, he was never treated for any kidney-related issue at Mayo other than his living donor transplant in October 2012.

REPLY
@gaybinator

@gaybinator Colleen, my husband passed away in his sleep on September 3, 2021. He had a PET scan one month earlier, and the cancer was in check. He had a tele-doctor meeting with nephrologist two days before. There was no indication that anything was different than any other day. God decided it was time to end his suffering.

Per your question, he was never treated for any kidney-related issue at Mayo other than his living donor transplant in October 2012.

Jump to this post

Hello, gaybinator. So good to hear from you. Thank you for responding to my tagging you.

I'm sorry to hear of your loss. It sounds like it was a peaceful ending, while not expected. Should you wish, you are welcome to join the discussions in the Loss & Grief group here: https://connect.mayoclinic.org/group/loss-grief/

I know that your words and experiences would be valuable for members and perhaps bring comfort to you too.

REPLY
@colleenyoung

@codered032, really good question to ask. Let me first direct you to some related questions where multiple members have shared their similar evaluations about where to get care (not necessarily kidney disease specific).
– Evaluating Care Models at Top Hospitals to Fit an Individual Patient https://connect.mayoclinic.org/discussion/evaluating-care-models-at-top-hospital-to-fit-an-individual-patient/
– Need Patients' Experience with Mayo Clinic. Is it worth it? https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/
– Comprehensive Collaborative Team Approach to Care https://connect.mayoclinic.org/discussion/comprehensive-collaborative-team-approach-to-care/

Allow me to bring a number of kidney patients into this discussion, some of whom have been to Mayo Clinic and others who haven't, like @zeppo @gingerw @lindes @kamama94 @predictable @basslakebabe19 @gaybinator @rosemarya @jim8086

Codered032, is your first consult with Mayo Clinic in person or virtual?

Jump to this post

@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

REPLY
@colleenyoung

@codered032, really good question to ask. Let me first direct you to some related questions where multiple members have shared their similar evaluations about where to get care (not necessarily kidney disease specific).
– Evaluating Care Models at Top Hospitals to Fit an Individual Patient https://connect.mayoclinic.org/discussion/evaluating-care-models-at-top-hospital-to-fit-an-individual-patient/
– Need Patients' Experience with Mayo Clinic. Is it worth it? https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/
– Comprehensive Collaborative Team Approach to Care https://connect.mayoclinic.org/discussion/comprehensive-collaborative-team-approach-to-care/

Allow me to bring a number of kidney patients into this discussion, some of whom have been to Mayo Clinic and others who haven't, like @zeppo @gingerw @lindes @kamama94 @predictable @basslakebabe19 @gaybinator @rosemarya @jim8086

Codered032, is your first consult with Mayo Clinic in person or virtual?

Jump to this post

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

REPLY
@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

Jump to this post

Thank you for your input. Like many others, my dx of MCD was totally shocking. I was healthy, no chronic illness and no routine medications, except a few supplements. I am educating myself as much as possible about treatment options. This group is very helpful and I appreciate everyone’s contributions.

REPLY

My husband started at the Mayo in Jacksonville, FL 4-5 years ago after being seen by a local Nephrologist whom we didn’t feel confident about. Our experience at the Mayo has been stellar. The comprehensive integrated team approach is the most amazing and reassuring experience. My husband was initially stage 3 CKD and seen every three months. The visits became more frequent as the disease progressed. Every visit included patient education so new symptoms did not come as a surprise and we knew what to expect. Unfortunately, my husband contracted Covid and then shortly after bladder cancer. We thank the nephrology department for sending us to urology at the first suspected sign of cancer. My husband had his bladder removed at the Mayo in May 2021 and began dialysis in July 2021. We were trained to do dialysis treatments at home and begin doing treatments at home in just a few days. Every member of my husband’s medical team is aware of everything that is happening which has helped to make this experience so much easier to navigate. Without reservation we highly recommend the Mayo and feel blessed we were able to access the world class care the Mayo offers.

REPLY

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

REPLY
@codered032

Thank you for your input. Like many others, my dx of MCD was totally shocking. I was healthy, no chronic illness and no routine medications, except a few supplements. I am educating myself as much as possible about treatment options. This group is very helpful and I appreciate everyone’s contributions.

Jump to this post

Sorry, what is MCD?

REPLY
@csage1010

Sorry, what is MCD?

Jump to this post

Hi, MCD is a kidney disease. Minimal Change Disease. Here’s a link for more explanation.
https://www.kidney.org/atoz/content/minimal-change-disease

REPLY
@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

Jump to this post

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.

REPLY
@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

Jump to this post

@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?

REPLY
Please sign in or register to post a reply.
  Request Appointment