Denial

Posted by daughterof1 @daughterof1, Mar 8, 2019

Concerned daughter here. My dad was seen and treated several times for different cancers at Mayo and always turned to them for help. He succumbed to bladder cancer in December.
Now Mom is having problems. Having severe abdominal pain, nausea. CT scan showed thick loculated ascites ( no change in abdominal girth) Pancreas and liver are fine CEA and Ca 125 slightly elevated. Surgeon in our small town suggested ovarian or endometrial.
We submitted medical records and were transferred to liver transplant area)??!!
Her case is denied.
I called today to see what is going on -got transferred BACK to liver transplant. We need help. She’s lost 20 pounds in 6 weeks. And was holding onto Mayo as her last chance.
Any suggestions?

Liked by EES1

@daughterof1, I want to welcome you to Mayo Clinic Connect. First, I offer my condolences to you and ypur mom for the loss fo your dad.
I am not medically trained and I am in no way going to attempt to comment on your mom's condition except to say that I am sorry that this is happening. I would like to try to help you understand what ids going on.
I am not sure that I completely understand what you intended to say. Did Liver Transplant deny her case? What was the result of your call yesterday when you were transferred "Back" to liver transplant?

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Since she was diagnosed with ascites, her case apparently went to liver transplant team. She has nothing wrong with her liver. I called and explained that to the person on the desk at the liver transplant/ hepatic workup side and was assured they would get the information to the correct team. This did not happen. Mom received her letter today simply stating she wasn’t accepted to be seen by the liver hepatic team. The surgeon here has already said her problem is likely ovarian or endometrial. She is devastated as Dad always always had such excellent service and care there. Help?

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When I called, I first talked to Toya then a gentleman I think Josh who put me on hold s minute then transferred me “back” to liver transplant. I talked again to Kim (to whom I’ve explained the situation prior to the denial already)who said she would try to get the info to Dr Peko (sp) and would get back to us. So we wait.

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@daughterof1

Since she was diagnosed with ascites, her case apparently went to liver transplant team. She has nothing wrong with her liver. I called and explained that to the person on the desk at the liver transplant/ hepatic workup side and was assured they would get the information to the correct team. This did not happen. Mom received her letter today simply stating she wasn’t accepted to be seen by the liver hepatic team. The surgeon here has already said her problem is likely ovarian or endometrial. She is devastated as Dad always always had such excellent service and care there. Help?

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@daughterof1 Hi "daughter", I too would like to welcome you to Connect. None of us on Connect are medically trained, we are just patients also with our own experiences that we share.
You say your mom's ascites is not liver-related, but that is one of the most common causes of ascites. I just did some googling and found this article interesting, it might be helpful to you:
https://www.merckmanuals.com/home/liver-and-gallbladder-disorders/manifestations-of-liver-disease/ascites
Do any of the causes mentioned here sound like they could be the cause of your mother's ascites?
I hope you can get a good diagnosis for it and some treatment that will help her.
JK

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@daughterof1

When I called, I first talked to Toya then a gentleman I think Josh who put me on hold s minute then transferred me “back” to liver transplant. I talked again to Kim (to whom I’ve explained the situation prior to the denial already)who said she would try to get the info to Dr Peko (sp) and would get back to us. So we wait.

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Hi daughterof1, I'm sorry you encountered such frustration. I encourage you to reach out to the office of patient experience if you are still unsatisfied with your encounter. https://www.mayoclinic.org/about-mayo-clinic/patient-experience

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@jamienolson

Hi daughterof1, I'm sorry you encountered such frustration. I encourage you to reach out to the office of patient experience if you are still unsatisfied with your encounter. https://www.mayoclinic.org/about-mayo-clinic/patient-experience

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We have sought medical help at another facility. Extremely disappointed. And a month later, no contact from Mayo regarding our appeal. Needless to say, the donations will cease as well

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@contentandwell

@daughterof1 Hi "daughter", I too would like to welcome you to Connect. None of us on Connect are medically trained, we are just patients also with our own experiences that we share.
You say your mom's ascites is not liver-related, but that is one of the most common causes of ascites. I just did some googling and found this article interesting, it might be helpful to you:
https://www.merckmanuals.com/home/liver-and-gallbladder-disorders/manifestations-of-liver-disease/ascites
Do any of the causes mentioned here sound like they could be the cause of your mother's ascites?
I hope you can get a good diagnosis for it and some treatment that will help her.
JK

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Oh, not sure I mentioned that I am an RN. I have been a nurse since 1979. It’s disappointing that medical practice has disintegrated to this point- the point of THE BEST now has blinders on- ascites is not always liver! Ascites is a symptom – not a diagnosis.

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@daughterof1

Oh, not sure I mentioned that I am an RN. I have been a nurse since 1979. It’s disappointing that medical practice has disintegrated to this point- the point of THE BEST now has blinders on- ascites is not always liver! Ascites is a symptom – not a diagnosis.

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Hi @daughterof1 being denied care is understandably frustrating. Did you contact the Office of Patient Experience?
Please check your private messages. I have sent you a secure message asking for more details.
Colleen

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