Going to Mayo Jacksonville for Gastroparesis...what to expect

Posted by gastrogirl @gastrogirl, Apr 24 1:42pm

I have hit every brick wall for years and finally am going to Mayo in FL in three weeks.
Just wondering how to make the most of the appointment and what to expect once there. Has anyone else been there for this and of so, what did they do.
So much anxiety over not knowing what to expect once I go there.
I know every case is different. I just have no idea what they do there and how it will be. Will they send me out to other specialist who are not on my list now? Do they schedule tests and procedures after you meet with the gastro specialist?
Not even sure how long to get my hotel room for.
Would like to hear others stories.
Thanks!

@gastrogirl, you're so wise to get input from other patients who have been to Mayo Clinic in Jacksonville, Florida for GI issues. I believe fellow members like @nobletype @fourof5zs @maryflorida and @amandaburnett may have some insights to share as you prepare for your first appointment.

While we wait for others to chime in, I might also suggest that you browse the topics in the Visiting Mayo Clinic group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Here are few specific discussions:
– Visit to Jax. Mayo Clinic https://connect.mayoclinic.org/discussion/visit-to-jax-mayo-clinic/
– Lodging in Jacksonville, FL https://connect.mayoclinic.org/discussion/lodging-in-jacksonville-fl/
– What can I expect at an Evaluation Appointment at Mayo Clinic https://connect.mayoclinic.org/discussion/evaluation-appts/
– 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/

And so much more.

REPLY

@gastrogirl

I go for a swallowing problem, so cannot answer about what specific test nor how long to plan for.

You will get an itinerary ahead of time… it will usually be on your patient portal, and a cooy mailed to your home. I find it easiest to download the Mayo app. There is a link at their web site for it.

If you have questions contact your care team via patient portal with a message or by a phone call .. I think the latter will be faster. I did this my first time for my endoscopy trips. They can answer your questions best on what to expect… and if you need to bring test results from another doctor.

You will first go to the Davis Building to check in. There are plenty of people to direct you. Last time I was there they directed me to leave my cell phone on. Sometimes while you are there a time for something may get changed or they may call your phone instead of calling your name out on the speaker at the lab.

REPLY
@fourof5zs

@gastrogirl

I go for a swallowing problem, so cannot answer about what specific test nor how long to plan for.

You will get an itinerary ahead of time… it will usually be on your patient portal, and a cooy mailed to your home. I find it easiest to download the Mayo app. There is a link at their web site for it.

If you have questions contact your care team via patient portal with a message or by a phone call .. I think the latter will be faster. I did this my first time for my endoscopy trips. They can answer your questions best on what to expect… and if you need to bring test results from another doctor.

You will first go to the Davis Building to check in. There are plenty of people to direct you. Last time I was there they directed me to leave my cell phone on. Sometimes while you are there a time for something may get changed or they may call your phone instead of calling your name out on the speaker at the lab.

Jump to this post

Good point about downloading the Mayo Clinic app beforehand, which includes access to the patient portal and so much more.

@gastrogirl, here's the link to information about the app and to download it. https://www.mayoclinic.org/apps/mayo-clinic

REPLY
@fourof5zs

@gastrogirl

I go for a swallowing problem, so cannot answer about what specific test nor how long to plan for.

You will get an itinerary ahead of time… it will usually be on your patient portal, and a cooy mailed to your home. I find it easiest to download the Mayo app. There is a link at their web site for it.

If you have questions contact your care team via patient portal with a message or by a phone call .. I think the latter will be faster. I did this my first time for my endoscopy trips. They can answer your questions best on what to expect… and if you need to bring test results from another doctor.

You will first go to the Davis Building to check in. There are plenty of people to direct you. Last time I was there they directed me to leave my cell phone on. Sometimes while you are there a time for something may get changed or they may call your phone instead of calling your name out on the speaker at the lab.

Jump to this post

Thanks so much and good luck with your issue! I do have the portal and the app. So far I have not gotten anything from anyone. I am exactly three weeks out. Is there a certain time when they do send you stuff before your appointment? Thanks so much!

REPLY

Hello, @gastrogirl….love the name, BTW! I go to Mayo Jacksonville regularly now for the last few years. Get ready for lots of information….

I am a gastro patient, in fact just had an endoscopy a few weeks ago, having another one May 3, Monday. A Schatzki Ring was seen and it's causing me to not be able to swallow well at times. Even water or a sip of liquid will stop mid-way and can be painful as it slowly gets in the right place to ease on down. So, since they found this and it is causing issues with swallowing, I'm having a 2nd procedure to use a balloon to stretch the scar tissue caused by the relux from the stomach over the years.

I have several issues that I see my gastroenterologist for help – long term reflux, Barrett's esophagus, Schatzki Ring, hiatel hernia, IBS, polyps in stomach and colon, etc. Each issue will be addressed by your doctor and/or his assistant and you with the team will make joint decisions about possible steps.

I've found Mayo, the people and the concept itself, very easy to work with. I have been surrounded with kindness, expert caring professionals who truly are there to help me discover what is happening and find answers. They are very good at that. I also want you to know I have been going now for 3 years, often, but have not had one test more than I should. They are not test happy, at least not with me. But, I have had and am still having tests and procedures. But, I have a lot going on so work with several areas.

In fact, I questioned having this 2nd endoscopy, especially so soon. Concerned about sedation, do I really need it, can it wait, etc. I saw the doctor last Thursday and we agreed I am doing well, much better in many areas, but this is indeed one thing that should not wait. Quality of life is very important. And, I got a go ahead from my neurologist, so I'll be there May 3. Then, soon after, I will be able to swallow more easily, without pain or choking. This is a good thing.

I urge you to call the main number and simply ask the operator for the secretary for your doctor in the gastroenterolgy dept,. She'll be so sweet and put you to the right person. Just tell her, every time you call, your name and birthdate. Every time!!!!!!

Then, mention the appointment and she'll give you every bit of information you need. She'll put a full schedule in the mail to you the same day, with all the information about your appointments, doctors, what to do and not do, what to wear, everything. Once you make contact with that dept, you're on your way to an easy transition to the Mayo way of doing things.

Also, don't worry about scheduling or whatever. You will see your first doctor, like him or her and feel comfy immediately. Then, as you openly and honestly describe your situation, he will set you up in the direction you need. He will refer you for testing, for bloodwork, for whatever and also may bring in other physicians to consult about this or other issues you may have bothering you. May I suggest you let them help you with other things that may be going on if you need them. It's the time to get diagnosis and treatment from the best.

I'll chat again if you have any questions about this process. It's really well run, simply done and makes so much sense. Amazing. And, your medical team will talk with you honestly and openly. they also talk with each other about you in order to do what you really need. I love that and have found it has solved many problems. What a concept….docs talking with each other about their patient!

Ok. There you go. Let me know if you have any questions. You'll like Jacksonville, Florida, and Mayo. It's lovely. The people are kind and helpful and pleasant. Temps are currently in the 70-80's, down in 60's at night. Lovely. Casual, Comfy.

Blessings on your journey. This is a wonderful beginning to getting good help. elizabeth

Oh, use your patient portal a lot. Ck it now for your schedule. It may surprise you what you can learn there. And, your test results and doctor consult notes will be available to you to see in hours from your visits. It's amazing. It 's your body and they treat you and it with respect. ess77

REPLY
@ess77

Hello, @gastrogirl….love the name, BTW! I go to Mayo Jacksonville regularly now for the last few years. Get ready for lots of information….

I am a gastro patient, in fact just had an endoscopy a few weeks ago, having another one May 3, Monday. A Schatzki Ring was seen and it's causing me to not be able to swallow well at times. Even water or a sip of liquid will stop mid-way and can be painful as it slowly gets in the right place to ease on down. So, since they found this and it is causing issues with swallowing, I'm having a 2nd procedure to use a balloon to stretch the scar tissue caused by the relux from the stomach over the years.

I have several issues that I see my gastroenterologist for help – long term reflux, Barrett's esophagus, Schatzki Ring, hiatel hernia, IBS, polyps in stomach and colon, etc. Each issue will be addressed by your doctor and/or his assistant and you with the team will make joint decisions about possible steps.

I've found Mayo, the people and the concept itself, very easy to work with. I have been surrounded with kindness, expert caring professionals who truly are there to help me discover what is happening and find answers. They are very good at that. I also want you to know I have been going now for 3 years, often, but have not had one test more than I should. They are not test happy, at least not with me. But, I have had and am still having tests and procedures. But, I have a lot going on so work with several areas.

In fact, I questioned having this 2nd endoscopy, especially so soon. Concerned about sedation, do I really need it, can it wait, etc. I saw the doctor last Thursday and we agreed I am doing well, much better in many areas, but this is indeed one thing that should not wait. Quality of life is very important. And, I got a go ahead from my neurologist, so I'll be there May 3. Then, soon after, I will be able to swallow more easily, without pain or choking. This is a good thing.

I urge you to call the main number and simply ask the operator for the secretary for your doctor in the gastroenterolgy dept,. She'll be so sweet and put you to the right person. Just tell her, every time you call, your name and birthdate. Every time!!!!!!

Then, mention the appointment and she'll give you every bit of information you need. She'll put a full schedule in the mail to you the same day, with all the information about your appointments, doctors, what to do and not do, what to wear, everything. Once you make contact with that dept, you're on your way to an easy transition to the Mayo way of doing things.

Also, don't worry about scheduling or whatever. You will see your first doctor, like him or her and feel comfy immediately. Then, as you openly and honestly describe your situation, he will set you up in the direction you need. He will refer you for testing, for bloodwork, for whatever and also may bring in other physicians to consult about this or other issues you may have bothering you. May I suggest you let them help you with other things that may be going on if you need them. It's the time to get diagnosis and treatment from the best.

I'll chat again if you have any questions about this process. It's really well run, simply done and makes so much sense. Amazing. And, your medical team will talk with you honestly and openly. they also talk with each other about you in order to do what you really need. I love that and have found it has solved many problems. What a concept….docs talking with each other about their patient!

Ok. There you go. Let me know if you have any questions. You'll like Jacksonville, Florida, and Mayo. It's lovely. The people are kind and helpful and pleasant. Temps are currently in the 70-80's, down in 60's at night. Lovely. Casual, Comfy.

Blessings on your journey. This is a wonderful beginning to getting good help. elizabeth

Oh, use your patient portal a lot. Ck it now for your schedule. It may surprise you what you can learn there. And, your test results and doctor consult notes will be available to you to see in hours from your visits. It's amazing. It 's your body and they treat you and it with respect. ess77

Jump to this post

Thanks so much for sharing your story! It made a huge difference and I want to wish you luck on your upcoming visit. I live 3 hours from Jacksonville and I love it there. But I am a first timer at mayo.
I have looked at my portal daily and I filled out everything. I sent all my test and images and doc notes quite some time ago. My portal is still empty. I am all set to tell them everything and let them take over. I feel I will get a wonderful response and finally some answers.

I really would love to know at what point before you go do they give you any schedule? I do have my consult, then my allergy appt then the gastro dept appt. But that is it.
Maybe they are waiting to speak with me and then decide what to schedule?
Not sure if most people know ahead about any test or if it is all done once you consult and they meet you?
That is the part that makes me nervous.

You travel there a lot. I hope it is not too far for you. Also, how is it getting them to work with insurance and get things paid for. I bet they are great at all of that. Nothing worse than needing a test or procedure that is out of pocket and over priced!

I can not thank you enough. Stay in touch! I wish you health and heppiness!

REPLY
@gastrogirl

Thanks so much for sharing your story! It made a huge difference and I want to wish you luck on your upcoming visit. I live 3 hours from Jacksonville and I love it there. But I am a first timer at mayo.
I have looked at my portal daily and I filled out everything. I sent all my test and images and doc notes quite some time ago. My portal is still empty. I am all set to tell them everything and let them take over. I feel I will get a wonderful response and finally some answers.

I really would love to know at what point before you go do they give you any schedule? I do have my consult, then my allergy appt then the gastro dept appt. But that is it.
Maybe they are waiting to speak with me and then decide what to schedule?
Not sure if most people know ahead about any test or if it is all done once you consult and they meet you?
That is the part that makes me nervous.

You travel there a lot. I hope it is not too far for you. Also, how is it getting them to work with insurance and get things paid for. I bet they are great at all of that. Nothing worse than needing a test or procedure that is out of pocket and over priced!

I can not thank you enough. Stay in touch! I wish you health and heppiness!

Jump to this post

Hello, @gastrogirl, @colleenyoung…..great to hear from you. I was up til almost 4 this morning writing you, I read your note and felt so deeply your concerns, I had to get off some info to let you know this will be a good, non-stressful experience for you. You will be guided every step, with clear response to your questions and folks helping the whole time.

Yes, you see your consulting doctor first, I suppose one of the gastro physicians? I imagine the first appt will get the ball rolling as soon as the doctor gets a feel for your needs and issues. I was very surprised and pleased the doctors had my records in the computer sitting on the desk where he sat and as time goes along, the docs and I look together at test results and imaging on the monitor, him giving me clear understanding of the body and my issues. What a dream, to actually have a partner in this process.

That's been one reason I'm better, I'm not alone! First time in years, I have someone on my side, leading me and walking with me to find answers and help me live a better life. Wow! And, of course, stay with this website. You're so smart to begin here before your appt. You go into this with folks on your side, who understand where you are and how you're feeling. That's huge…..You're beginning several steps ahead!

Then, hold on as the testing begins. You'll be kept very busy with tests in imaging and bloodwork. They are great schedulers, experts at working things in order and not wasting your time. You may sit a bit between visits or tests, but not much. When I was on the campus last week, I had 4 consults and bloodwork all in one day. I was exhausted, but I'm 74, have way too many issues to keep the staff busy and chronic fatigue and pain anyway, so add a full day and I needed to rest a bit. It worked well and had a good day. I appreciate the way they work with me like that. Kept me from making multiple trips to the campus on different days.

The Clinic is on San Pablo, off J. Turner Butler Blvd, in the southside of Jax. I live in the southside so travel to Mayo is not bad at all. I make it from home to the clinic in about 20 minutes generally. I suppose you're driving your own car, and I have no idea your age or condition, but just fyi….the parking valet service at each building is wonderful. The valets are young men, very polite, great service. I use the valet every time I visit, since mobility is an issue and I use a walker. The fellows get it out for me, are very pleasant and helpful. Cost is $8 to park, I usually tip a couple of $$. And, if you have an appt and park at one building, then need to drive to another appt in another building, there is no additional charge. You let them know and keep the ticket for the next stop. I do give each of the fellows who brings me my car a $2 tip. That's fair….

Sounds like you're already on the way with the allergy appt. Is that for tests re gasto interaction? I also had allergy testing for a medication I must take to reverse the hormonal issues that affected my blood pressure up and down, kept my potassium levels very low for years, and such. I did fine and am taking the meds and these issues are well controlled currently…..it is a balancing act that requires staying on top of things and on what's happening with my body. If you have ongoing gastro issues, you may find the same for you. I'm thrilled they discovered the underlying problem and can treat it well.

I suspect you already have your room reservations, etc. Colleen gave you good links for info. A lot does depend on your age and physical condition, and if you're alone in Jax. You may enjoy going back to your room after a day at the Clinic and relaxing. Or, getting ready or prepping for the next day and testing. We can stay in touch and I'll be happy to give a few personal pointer if you want about things to do after you finish a day, but I suspect you'll be ready to rest some.

Hope this helps, my friend. Ask away and let me know your thoughts, questions. Also, be sure to put your questions on paper now so when you sit in front of the docs, some folks recommend a journal to keep your questions, symptoms, thoughts, in one place making it easy to keep a good record for yourself. It's also good for the emotions and soul.

Be well, call tomorrow if you so decide. I think it wise to make personal contact now. You'll get questions answered, problems solved before they occur and feel well prepared and secure in the trip.

Chat later…..blessings, elizabeth

REPLY
@gastrogirl

Thanks so much for sharing your story! It made a huge difference and I want to wish you luck on your upcoming visit. I live 3 hours from Jacksonville and I love it there. But I am a first timer at mayo.
I have looked at my portal daily and I filled out everything. I sent all my test and images and doc notes quite some time ago. My portal is still empty. I am all set to tell them everything and let them take over. I feel I will get a wonderful response and finally some answers.

I really would love to know at what point before you go do they give you any schedule? I do have my consult, then my allergy appt then the gastro dept appt. But that is it.
Maybe they are waiting to speak with me and then decide what to schedule?
Not sure if most people know ahead about any test or if it is all done once you consult and they meet you?
That is the part that makes me nervous.

You travel there a lot. I hope it is not too far for you. Also, how is it getting them to work with insurance and get things paid for. I bet they are great at all of that. Nothing worse than needing a test or procedure that is out of pocket and over priced!

I can not thank you enough. Stay in touch! I wish you health and heppiness!

Jump to this post

They ck'd your insurance coverage before accepting you as a patient. I have medicare and united health care plan F. This year, Mayo is paid directly. They must have changed policy since past years I've rec'd the insurance cks and signed them over to the financial office. Or, deposited and paid mayo directly. Now, I just pay my account occasionally when it show, on patient portal, something is owing. If you like, you can set up monthly payments on the portal as the need arises. I could never afford this level of are. Never….blessed and thankful. God is good! elizabeth

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@gastrogirl Hello. I hear you'd like some support from the Mayo group regarding your upcoming visit to Mayo Clinic. Please don't hesitate to contact me if I can be of any help. Hugs. Laurie

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@artist01

@gastrogirl Hello. I hear you'd like some support from the Mayo group regarding your upcoming visit to Mayo Clinic. Please don't hesitate to contact me if I can be of any help. Hugs. Laurie

Jump to this post

Hi Laurie, I moved your message to the discussion @gastrogirl started about visiting Mayo Clinic soon, so that you can connect with her here.

REPLY
@colleenyoung

Hi Laurie, I moved your message to the discussion @gastrogirl started about visiting Mayo Clinic soon, so that you can connect with her here.

Jump to this post

Ok @colleenyoung Thankyou. As usual, I wasn't sure how to do it and, of course, chose the wrong route!

REPLY
@ess77

Hello, @gastrogirl….love the name, BTW! I go to Mayo Jacksonville regularly now for the last few years. Get ready for lots of information….

I am a gastro patient, in fact just had an endoscopy a few weeks ago, having another one May 3, Monday. A Schatzki Ring was seen and it's causing me to not be able to swallow well at times. Even water or a sip of liquid will stop mid-way and can be painful as it slowly gets in the right place to ease on down. So, since they found this and it is causing issues with swallowing, I'm having a 2nd procedure to use a balloon to stretch the scar tissue caused by the relux from the stomach over the years.

I have several issues that I see my gastroenterologist for help – long term reflux, Barrett's esophagus, Schatzki Ring, hiatel hernia, IBS, polyps in stomach and colon, etc. Each issue will be addressed by your doctor and/or his assistant and you with the team will make joint decisions about possible steps.

I've found Mayo, the people and the concept itself, very easy to work with. I have been surrounded with kindness, expert caring professionals who truly are there to help me discover what is happening and find answers. They are very good at that. I also want you to know I have been going now for 3 years, often, but have not had one test more than I should. They are not test happy, at least not with me. But, I have had and am still having tests and procedures. But, I have a lot going on so work with several areas.

In fact, I questioned having this 2nd endoscopy, especially so soon. Concerned about sedation, do I really need it, can it wait, etc. I saw the doctor last Thursday and we agreed I am doing well, much better in many areas, but this is indeed one thing that should not wait. Quality of life is very important. And, I got a go ahead from my neurologist, so I'll be there May 3. Then, soon after, I will be able to swallow more easily, without pain or choking. This is a good thing.

I urge you to call the main number and simply ask the operator for the secretary for your doctor in the gastroenterolgy dept,. She'll be so sweet and put you to the right person. Just tell her, every time you call, your name and birthdate. Every time!!!!!!

Then, mention the appointment and she'll give you every bit of information you need. She'll put a full schedule in the mail to you the same day, with all the information about your appointments, doctors, what to do and not do, what to wear, everything. Once you make contact with that dept, you're on your way to an easy transition to the Mayo way of doing things.

Also, don't worry about scheduling or whatever. You will see your first doctor, like him or her and feel comfy immediately. Then, as you openly and honestly describe your situation, he will set you up in the direction you need. He will refer you for testing, for bloodwork, for whatever and also may bring in other physicians to consult about this or other issues you may have bothering you. May I suggest you let them help you with other things that may be going on if you need them. It's the time to get diagnosis and treatment from the best.

I'll chat again if you have any questions about this process. It's really well run, simply done and makes so much sense. Amazing. And, your medical team will talk with you honestly and openly. they also talk with each other about you in order to do what you really need. I love that and have found it has solved many problems. What a concept….docs talking with each other about their patient!

Ok. There you go. Let me know if you have any questions. You'll like Jacksonville, Florida, and Mayo. It's lovely. The people are kind and helpful and pleasant. Temps are currently in the 70-80's, down in 60's at night. Lovely. Casual, Comfy.

Blessings on your journey. This is a wonderful beginning to getting good help. elizabeth

Oh, use your patient portal a lot. Ck it now for your schedule. It may surprise you what you can learn there. And, your test results and doctor consult notes will be available to you to see in hours from your visits. It's amazing. It 's your body and they treat you and it with respect. ess77

Jump to this post

@ess77 Excellent information, Elizabeth. I wish I could go to Mayo Clinic. Sounds awesome.

REPLY
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