Need help figuring out how to get admitted!

Posted by captainheather @captainheather, Apr 6 6:34pm

Main Question: We're from California, my sister is on medical and we're trying to figure out how to get to the Mayo Clinic in AZ.

History: My sister has a lot of things going on, but the main thing that we're concerned about is that she literally has less than 10 food items she can eat, and most of them have almost no protein. We've seen our doctors in Kaiser about this multiple, MULTIPLE times, but they are at a loss as to how to help, and the turn around is so slow we're worried she's going to get more sensitivities and the food list will just keep growing smaller. She does not get anaphylaxis, but when she eats something she is "allergic" too aka has a sensitivity to, she gets extremely nauseous to the point she will throw it up. She also has diarrhea every day for most BMs. This is just so people know the main problem.

We called the appointment center today, but it was very discouraging. Basically the GI specialist is not taking new patients, and the call ended. We need to see someone who can actually help her, or she will die from malnutrition. Does anyone know the proper steps to take to figure out how we get admitted, and then the whole insurance angle? We'd love to call and talk to a Mayo person, but the appointment center was the only number we've been given! We're working on getting a referral from our actual doctor in the Kaiser system, but I'm posting here because we are desperate and need help.

Thanks in advance!

@captainheather Hi and welcome to Mayo Clinic Connect. Your poor sister! I can’t even imagine what she’s going through and what a helpless feeling when you can’t find any answers.

I’m not the person with the answers for referral. But I wanted to acknowledge you and let you know that you can expect a response from one of our Monitors or a mentor who has more experience in this area, Wishing your sister all the best! Lori.

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@captainheather
I wanted to add this to the bottom of my message. There are some conversations on Connect which may be helpful in obtaining the first appointment.

Advice on providing information to get initial appointment
https://connect.mayoclinic.org/discussion/advice-on-providing-information-to-get-initial-appointment/

Hopefully you can obtain a referral to Mayo from your sister’s doctor at Kaiser.

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@captainheather, the GI Department may be operating at full capacity at the moment. There are a couple of things you can try:
1) inquire if your sister can be seen by Internal Medicine
2) ask her current doctor to make a referral to Mayo Clinic

Your sister can self-refer, as she has done. However, sometimes it can be helpful when doctors speaks with doctors to explain the medical history. Might it be possible to get a physician referral?

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Thanks for the replies so far! We are going to try asking about internal medicine, and still waiting to see if we can also get a referral.

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@captainheather Let me add my welcome to Mayo Connect. It is frustrating to not find answers. As Kaiser is a large health system, all the doctors are connected through their computers, and they can look up things from other doctors. In case you cannot get in to Mayo for some reason, I would try UC San Francisco Medical Center [in the north], or Cedars-Sinai or Keck-USC [in the south]. These are all excellent teaching hospitals.

I hope you and your wife find your way in to a location who can help you. Make sure you have all her medical records/lab reports in your possession so you can proceed! Please let us know what you are able to get done, as we are always interested.
Ginger

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Could you travel to Mayo in Rochester? The GI group there has more practitioners. Good luck!

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Thank you to EVERYONE who has replied! I wanted to update this thread. My sister finally got an endoscopy and they found out she has ulcers! And not just a small one, but multiple ones, and one is quite large. It was literally like pulling teeth to get any tests run, and the dates to get them were so far out it was insane, weeks to months down the road. She was literally down to eating only 3 foods…artichokes, apricots and things like maple syrup or agave. She couldn't have wheat, soy, any meat, no veggies or other fruits. It was insane. Her GI doctor had a last minute cancellation or he decided to finally believe her that she wasn't making this up, and scheduled the endoscopy, and thus what we discovered.
Anyway, now that she's on the acid reducing for the ulcers, she's able to eat again! We haven't tried things that she was much more sensitive to, like poultry and dairy, but corn, legumes/beans, soy and oils she can now eat again, which is honestly life changing for her.

The crazy part about all of this is that it took my family asking questions, and doing "me-search" to try and figure things out, and EoE, eosinphilitis was one of the only things we had found that might fit, hence why we wanted a referral to Mayo in the first place. If they had actually believed her about not being ABLE to eat vs not WANTING to eat, we would have solved this years ago. She's been having less and less food she could consume for 8+ years, with the last year being an extreme reduction in food rapidly, hence all the tests, dr visits, etc.

Anyway, I appreciate the support from this thread <3 So, that's the update!

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@captainheather

Thank you to EVERYONE who has replied! I wanted to update this thread. My sister finally got an endoscopy and they found out she has ulcers! And not just a small one, but multiple ones, and one is quite large. It was literally like pulling teeth to get any tests run, and the dates to get them were so far out it was insane, weeks to months down the road. She was literally down to eating only 3 foods…artichokes, apricots and things like maple syrup or agave. She couldn't have wheat, soy, any meat, no veggies or other fruits. It was insane. Her GI doctor had a last minute cancellation or he decided to finally believe her that she wasn't making this up, and scheduled the endoscopy, and thus what we discovered.
Anyway, now that she's on the acid reducing for the ulcers, she's able to eat again! We haven't tried things that she was much more sensitive to, like poultry and dairy, but corn, legumes/beans, soy and oils she can now eat again, which is honestly life changing for her.

The crazy part about all of this is that it took my family asking questions, and doing "me-search" to try and figure things out, and EoE, eosinphilitis was one of the only things we had found that might fit, hence why we wanted a referral to Mayo in the first place. If they had actually believed her about not being ABLE to eat vs not WANTING to eat, we would have solved this years ago. She's been having less and less food she could consume for 8+ years, with the last year being an extreme reduction in food rapidly, hence all the tests, dr visits, etc.

Anyway, I appreciate the support from this thread <3 So, that's the update!

Jump to this post

@captainheather Thank you for giving the positive update about your sister! It’s not ‘good news’ but it is wonderful that she now has a diagnosis and can get the help she needs! And to simply be able to eat again is huge!

I can’t believe she’s suffered for so long without answers when all it took was an endoscopy!! That poor woman! My husband developed an ulcer about a year ago. He’s a tough guy but that brought his active life to a virtual standstill and it was a small ulcer.

Let her know it will still take time to repair the damage caused by the ulcer but at least now she will be on the road to recovery. You’re a very loving sister and she’s extremely lucky to have such a strong support system.

Wishing continued good health to your sister…and you! Lori

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