What happens following a Mayo appointment

Posted by emkeizer @emkeizer, Fri, Jul 19 6:34pm

We just found out we got an appointment and couldn’t be more thrilled. However – were wondering how coordination of care goes after you have your visit. We are hoping for a diagnosis and a treatment plan from Mayo. But we are coming from Michigan so will obviously be going home. Will there be a way to coordinate all treatment from home once the path has been set? Or will we have to stay in Minnesota for he duration of the treatment?

It is going to depend. on what the treatment is. After my surgery for pancreatic cancer, the doctors at Mayo determined what I needed for chemo, but I needed a local oncologist to prescribe it. I had my chemo at my local hospital. The following year I had kidney problems. The infusion was a specialized medicine. No one locally would administer it so I had to go to Mayo in Rochester each week for treatment (a 4 hour drive).

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@marvinjsturing

It is going to depend. on what the treatment is. After my surgery for pancreatic cancer, the doctors at Mayo determined what I needed for chemo, but I needed a local oncologist to prescribe it. I had my chemo at my local hospital. The following year I had kidney problems. The infusion was a specialized medicine. No one locally would administer it so I had to go to Mayo in Rochester each week for treatment (a 4 hour drive).

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Hi @emkeizer I am Scott and I was my wife’s caregiver while she battled brain cancer. She received her initial diagnosis at Mayo, but we lived in Indiana. Mayo did a fabulous job of coordinating her care with her local GP and then scheduling needed follow up with her neuro-oncology team at Mayo periodically along with some telemedicine late in her illness. It worked wonderfully for her for her 14+ year battle.

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@IndianaScott

Hi @emkeizer I am Scott and I was my wife’s caregiver while she battled brain cancer. She received her initial diagnosis at Mayo, but we lived in Indiana. Mayo did a fabulous job of coordinating her care with her local GP and then scheduling needed follow up with her neuro-oncology team at Mayo periodically along with some telemedicine late in her illness. It worked wonderfully for her for her 14+ year battle.

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Scott thanks so much that is very helpful. My mother was just diagnosed with brain cancer as well so very good to hear that. Also the 14 years part – very encouraging!

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I got my organ transplant at Mayo Rochester in 2009. I return annually, and even though I was given the option of transferring my aftercare to my local transplant center, My husband and I chose to make the 1500 mile round trip drive every year to be seen by the Mayo Doctors. My local PCP guides my care here at home, and he and any specialty doctor will cooperate and coordinate with Mayo. This has worked for us in my situation.

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As a Mayo Clinic patient I would highly recommend setting up patient account found on the Mayo Clinic website. It allows you to review test results, doctor notes, images, appointment schedule, pay your bill, update medical history, echeck in for appointments. But the one thing I absolutely love – a secure portal to direct questions and concerns to the members of your medical team. So if after I leave and realize I forgot to ask a question or now have a new question, I just log on and send a secure message to the appropriate team member. So even if you end up with a plan to use locally, your medical team at Mayo is there if you need them. I maybe five hours away, but with this patient portal it makes me feel like they are next door. My local clinic has something similar, but no where near the functionality as what Mayo has. Mayo has spoiled me.

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Hi! I am just getting myself acquainted with Mayo's Connect. I am in my 4th year, since March 12th 2016 with End-stage Liver Disease with Ascites, Varices, and Encephalopathy. My brother just died on July 17th with the same thing only not diagnosed or treated. He didn't ever see a Dr. except for something broken, a foot, an arm… I have maintained a considerably stable balance so far, however, a recent influx of symptoms have brought me right back to square One! My family are all in the southern states, TX, AZ, NM, OK, GA, MO and 1 son in NH. I Just started the transfer to Mayo process to get me from Michigan to Arizona for Tx. Wish me luck and forward any suggestions, ideas, have to's, don't's, travel, lodging, resources, , etc… anything.

Remax photo

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@tayloryvette

Hi! I am just getting myself acquainted with Mayo's Connect. I am in my 4th year, since March 12th 2016 with End-stage Liver Disease with Ascites, Varices, and Encephalopathy. My brother just died on July 17th with the same thing only not diagnosed or treated. He didn't ever see a Dr. except for something broken, a foot, an arm… I have maintained a considerably stable balance so far, however, a recent influx of symptoms have brought me right back to square One! My family are all in the southern states, TX, AZ, NM, OK, GA, MO and 1 son in NH. I Just started the transfer to Mayo process to get me from Michigan to Arizona for Tx. Wish me luck and forward any suggestions, ideas, have to's, don't's, travel, lodging, resources, , etc… anything.

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@tayloryvette
Welcome to Mayo Connect. I would like to, first, offer my sincere condolences on the recent passing of your brother.

I am happy that you have joined our on-line community. I am a liver and kidney recipient, and as a volunteer mentor, I will do my best to connect you with others and to share some resources that might be helpful.

Would you care to join me in the Transplant Group? There are many discussions where members are talking about and sharing their transplant experiences. I have every confidence that they will be eager to meet you and to provide their support to you. Many are recent transplant patients who have first hand experience and knowledge about the lodging, travel at the Mayo AZ Campus. Others have transplated at other transplant centers, and have experienced the same symptoms that you have listed.

Here is a good place to begin: Liver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/
All you have to do is to post a question, and then sit back and wait for replies. You are not alone. I will look for you there.

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Thank you so much Rosemary. I just got teary eyed. I am so scared that reading that you are a double recipient gives me hope. My biggest fear is to go like my brother did. So much pain. The way he was found showed that he just doubled over and collapsed. My symptoms are starting to return after a good three years plus and now I am afraid the same will happen to me.Not that I wanted it to happen to him but it also happened to my cousin and my grandpa. My advantage is having been diagnosed and being treated. Hopefully, I break the cycle. I would love to join any group that I can learn from. I am a Real Estate Agent and love talking to people.Thank you! Taylor

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@tayloryvette

Hi! I am just getting myself acquainted with Mayo's Connect. I am in my 4th year, since March 12th 2016 with End-stage Liver Disease with Ascites, Varices, and Encephalopathy. My brother just died on July 17th with the same thing only not diagnosed or treated. He didn't ever see a Dr. except for something broken, a foot, an arm… I have maintained a considerably stable balance so far, however, a recent influx of symptoms have brought me right back to square One! My family are all in the southern states, TX, AZ, NM, OK, GA, MO and 1 son in NH. I Just started the transfer to Mayo process to get me from Michigan to Arizona for Tx. Wish me luck and forward any suggestions, ideas, have to's, don't's, travel, lodging, resources, , etc… anything.

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Hi @tayloryvette And welcome to Connect. @rosemarya always has good advice, I hope you do participate in the transplant group. I had a liver transplant in September 2016 and have done excellently ever since. The cause of my liver problems was non-alcoholic cirrhosis. I had edema often, particularly after traveling, and hepatic encephalopathy (HE) which was usually controlled with xifaxan.
You don’t mention the cause of your liver disease, but obviously there is a genetic component. It seems as if causes are different but the end result is the same.
I hope all goes well at Mayo for you. Let us know as things progress. By the way, I am in NH, just outside of Manchester!
JK

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I have chosen to make this a relaxing afternoon and to visit with some fellow Mayo patients. It is hot and dry here in central Kentucky, so I'm inside with the AC and with my legs propped up for the afternoon!

@emkeizer, How are you doing? Have you traveled to Mayo in Rochester for your appointment, yet? Or is it still on the horizon? I recently saw a friend at our farmers market here, who had received his diagnosis and treatment at Mayo, and now is able to receive it locally. I hope that you will be able to coordinate your at-home care with your local provider if that is what works best for you.

@marvinjsturing, I'm dropping in to say "Hi". I send you my thoughts and hopes as you continue on your journey. Also a dose of patience is included.

@nancy82415, I like the Mayo Patient Portal, too. I can easily access my records from 10 years back. My local health care has a portal, but if I don't access it within a limited time, the information disappears from my site. Then I will have to take extra steps to have someone pull it up for me. I have learned that it can be time consuming when that happens.

@tayloryvette, How are you feeling? I am concerned about you and your liver issues. Have you made any progress toward getting an opinion from Mayo?

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@rosemarya

I have chosen to make this a relaxing afternoon and to visit with some fellow Mayo patients. It is hot and dry here in central Kentucky, so I'm inside with the AC and with my legs propped up for the afternoon!

@emkeizer, How are you doing? Have you traveled to Mayo in Rochester for your appointment, yet? Or is it still on the horizon? I recently saw a friend at our farmers market here, who had received his diagnosis and treatment at Mayo, and now is able to receive it locally. I hope that you will be able to coordinate your at-home care with your local provider if that is what works best for you.

@marvinjsturing, I'm dropping in to say "Hi". I send you my thoughts and hopes as you continue on your journey. Also a dose of patience is included.

@nancy82415, I like the Mayo Patient Portal, too. I can easily access my records from 10 years back. My local health care has a portal, but if I don't access it within a limited time, the information disappears from my site. Then I will have to take extra steps to have someone pull it up for me. I have learned that it can be time consuming when that happens.

@tayloryvette, How are you feeling? I am concerned about you and your liver issues. Have you made any progress toward getting an opinion from Mayo?

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This just popped up and I thought it was such a thoughtful thing to do, to just check in. I don’t believe we have communicated but Feel moved to respond. I am not relaxing this afternoon, although I am about to sit outside in my rocking chair for a bit with my afternoon coffee here in sunny Minnesota. Today I have been “madly” cleaning house, stocking the pantry etc in preparation for my husband’s surgery on Wed, Aug 28, at Mayo Rochester for pancreatic cysts. Major surgery that we hope will go well. We have been back and forth to Mayo several times this summer for a diagnosis and treatment plan so our summer has been anything but restful. Sending good thoughts your way.

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@susan2018

This just popped up and I thought it was such a thoughtful thing to do, to just check in. I don’t believe we have communicated but Feel moved to respond. I am not relaxing this afternoon, although I am about to sit outside in my rocking chair for a bit with my afternoon coffee here in sunny Minnesota. Today I have been “madly” cleaning house, stocking the pantry etc in preparation for my husband’s surgery on Wed, Aug 28, at Mayo Rochester for pancreatic cysts. Major surgery that we hope will go well. We have been back and forth to Mayo several times this summer for a diagnosis and treatment plan so our summer has been anything but restful. Sending good thoughts your way.

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@susan2018, I hope that you were able to relax for a while last week in your rocking chair. I send my thoughts and prayers across the miles as you and your husband prepare for his upcoming surgery. I hope that everything goes well. If you have not yet experienced a surgical procedure at Mayo, I can honestly assure you that your husband (and you) are in the best place and will receive the best of care throughout the entire procedure as well as afterwards.
I received my liver and kidney transplant in Rochester at Mayo Methodist Hospital, and I received excellent surgical care, and my husband was kept updated throughout the entire procedure and recovery. I clearly remember being visited by my anesthesiologist and surgeon prior to the surgery, and their words put me completely at ease when I was rolled into the surgery.
Only good thoughts on 28th. Hugs and prayers.

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