Nikim, I am glad you found us. I am so sorry you are having to deal with all this. I go to Mayo Jacksonville and have been very satisfied with them. I developed liver cancer from hep C, and they literally saved my life. I was not a candidate for transplant, as my tumor had metastasized to the inferior vena cava. With treatment, it shrunk back into the original tumor, which was huge, and they removed the right lobe of my liver a year ago May. I have thus far remained cancer free.
When you say your mom has been through "tons of tests with few answers," what is it that has been left unanswered? If you have questions, you should definitely ask them. However, due to new privacy laws, you would need your mother's written "okay" for medical information to be shared with you, especially if you are not in her presence.
First of all, I think you should contact the social worker to find out what her concerns are. Have her define "psychological issues." Secondly, Mayo does not accept Medicaid as a primary insurance, only as secondary. Does your mom have Medicare? My primary is Medicare. You probably know that Medicare will not pay for transplants, but Medicaid will. Mayo also has a charity program that can pay some, or all, of her bills if she qualifies financially, and it sounds as though she would. They reevaluate every year. This is my third year on their charity program. I never receive bills at all, which is such a relief and a blessing. This office is located in the Financial Office on the first floor of the Davis Bldg. Your mom would need to fill out some forms and provide them with bank statements and proof of income. It only takes them about 2 weeks to either approve or deny. I have never found Mayo to be about "getting money out of me," and I have had 4 major surgeries there in recent years, the most recent being a month ago. As a matter of fact, I have an appt. there tomorrow for blood work and to see the surgery P.A. I am always seen at the Transplant Center.
I am wondering if your mom had an endoscopy. That would show whether she has varices. Also, her small size and other considerations may make her a poor candidate for transplant. I would certainly ask for more clarification. The Transplant Center is on 3 North of the Mayo Hospital and Building, as your mom may know if she's been there recently. I can also tell you that my calls are ALWAYS returned, even if just by a secretary.
Post Edited (hep93) : 6/30/2008 2:30:59 PM (GMT-6)
Welcome to the forum!
Sorry to hear about your mom! You have definatley come to the right place! My son Wil is also in need of a transplant and from what I understand they do have to be evaluated and go threw alot of testing. Wil is on the indegent program or charity due to he has no medicaid , SSI or insurance. We drive 4hrs. to get him to Shand's in Gainesville so I definatley know what your talking about. We try and schedule all of his test and Dr. apt at the same time as he goes every 3 months. So like CT, bloodtest, Ecko and such are done on Thursdays and Friday Dr. goes over everything, except bloodwork we will get a call on that the following week to find out MELD ect.. I know you have an extra expence with a hotel but, they have low rates for patients and caregivers also Ronald Mcdonald homes are available at no cost for patients and families. Not sure if there is an age limit. Connie and Carol are right on ask questions, my suggesstion is write them down as when you go to the apts. you can check your notes so as not to forget anything! If your mom does not qualify for a transplant ask if it is due to medical or financial? Then get the answer for either as Connie said there maybe issues you don't know about. Everyone even us caregivers have psychological issues can't emagine what are loved ones are going thru. I would have them explain what they mean. Good luck and know our prayers are with you and your family! Hold on tight it is a rollercoaster and you will have alot of ups and downs! You and your mom are not alone!
Huggs and smooches,
Nikim, you need to find out who evaluated your mother...who did the psychological testing. It was not the social worker--she was just giving results. Also, who was your mom's hepatologist? You need to contact him. You may have difficulty obtaining info, due to HIPAA privacy regulations, but your mom could ask specifically what issues may have made her ineligible. Did she have a transplant coordinator? That would be another person who could provide some insight into what happened. This simply does not sound like Mayo. I think some information is missing somewhere and you need to know what happened.
Post Edited By Moderator (Pink Grandma) : 7/1/2008 10:48:58 PM (GMT-6)
I just wanted to mention that I overheard a conversation today at Mayo by a relative of someone waiting for a transplant. She said that they told her they do not do living donor transplants at all. I know at one time I thought that they did, and that that accounted for their short wait time for transplants. Apparently, I was incorrect.
Toni, in the conversation I overheard, the lady also said that the doctor told her they don't do living donor liver transplants because they then have to worry about 2 patients instead of one. That's a simplified version of what you described.