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Posted 6/30/2008 1:37 PM (GMT 0)
My mother is 52 years old and has been struggling with liver disease for about 3 years now.  She began going to the Mayo Clinic in Jacksonville shortly after she was diagnosed and has been through tons of test with few answers.  about a year ago she began internal bleeding from what they think are varices but no one has been able to tell us for sure.  She is in the hospital about every 3 weeks now to recieve a transfusion and her quality of life is very poor.  She went to the Mayo clinic and they had planned to do more testing and decide whether or not to put her on the actual transplant list (she was told that they wanted to wait until she was extremely sick because she has a common blood type and because of her size she will need a very small liver) or to do what I think was called a tipps procedure which would have many complications, on of which is dementia.  She drove again to Jacksonville which is two hours away the other day and spent ten minutes with a counselor and then was told she could go home.  Then on Saturday she recieved a registered mail letter stating that they were denying her transplant because they belive she has psychological issues.  Of course she has psychological issues, she is 52, recently divorced after 25 years, is living off of a small disability check, her insurance won't cover most of her medical bills and she is dying, who wouldn't have psychological issues.  I just don't understand how after 3 years of tests and running back and forth how they could after all of that just out of the blue deny her.  I guess they got their money's worth out of her.  Has this ever happened to anyone else and is there another hospital that she can go to or will this ruling from the Mayo Clinic ruin her chances with anyone else?  Any advice would be appreciated. 
Posted 6/30/2008 3:08 PM (GMT 0)
Hi Nikim19 and welcome to HealingWell,

I'm so sorry that your Mom is having to go through all this. I am sure that when hep93(Connie) sees your posts and sees that you are dealing with the Mayo Clinic that she will have some info for you.

My husband has HepC and liver cancer, but the cancer is almost undetectable now.

Carol
Posted 6/30/2008 4:28 PM (GMT 0)
She has tried to contact the Mayo clinic but no one will return her calls. She has some other calls in to her primary care physician and some other hospitals such as Shands and the Florida Hospital but Shands is pretty far away and would be a huge financial burden. My mother is recieving SS benefits and is on Medicaid I think which just happened recently when her primary insurance decreased the amounts they would pay and said Medicaid would have to supplement. I am begining to wonder if this new financial development may have something to do with them denying her since the hospital will not get paid as much from Medicaid as they would from her other insurance. It is all so frustrating. She is only a 14 on the list but the number gets higher everytime and now she has to start all over with a new hospital if they will take her which means her number may climb too high before she even finishes the process. She was doing very well and we thought she could just live with the disease for a while until a year ago but I am not so sure now. She only weighs 90 pounds, her enamel is being stripped from her teeth and they are chipping but she can't afford a dentist, she can barely leave the house many times because she feels so bad and is always tired. I have two young children and my own life to deal with, I have had to miss so much work but she is my mother and I feel like I need to do something.
Posted 6/30/2008 7:41 PM (GMT 0)

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.

Do NOT start over with another hospital until you fully understand why your mom was denied a transplant.

If there is any other info I can help you with, just let me know.

Hugs,

Connie


Post Edited (hep93) : 6/30/2008 2:30:59 PM (GMT-6)

Posted 7/1/2008 3:21 AM (GMT 0)
Welcome to the forum Nikim, I am so sorry that your mother is having to deal with this terrible disease. I will be saying a prayer for you and your mother tonight.
Posted 7/1/2008 4:29 AM (GMT 0)
Thanks Connie!

I knew you would come through for Nikim. I sure hope she investigates the Charity Program. Is there a caregiver support group in her area that she could look into?

Hi Nikim, I understand how hard all of this is for you, especially with 2 young ones to care for. Do you have any other family members or friends that can help you at all?

Carol
Posted 7/1/2008 1:09 PM (GMT 0)
Thank you for your help Connie. My mother does have Medicaid as her secondary insurance and Tricare as her primary however they do not cover everything and she has to drive 95 miled to get to the clinic. With the price of gas that is a pretty big bill for her to drive up there for a ten minute appointment with a counselor she has never met and then to be told that she cannot have a transplant because of her psychological issues. We have left several messages with several people and have gotten no calls back. I would understand if they could explain that because of her size or some other reason she is not a good candidate but to just say that because she is depressed she cannot have a transplant is insane to me. If someone drinks while they are on a list then they are made to go to AA and go through more counseling before being reevaluated but they aren't even giving my mother a chance to be reevaluated, they have just said no. I just don't understand how they can just dismiss a life like that. She is a young woman with six grandchildren and doesn't want to die, there is not psychological issuse I can think of that would cause her to be inelegible for a transplant. She does have varices and has had the endoscopy but she has bleeding from another area as well that they have yet to find. She was going to swallow the pill to look for the source but then they decided that she couldn't have a transplant so have discontinued all treatment. She was also supposed to have the tips (which she was unsure about doing) but they will not do that now either. They won't see her anymore at all. I don't know that she has any choice but then to start over...Mayo has said they won't treat her anymore....which I am sure is great for those psychological issues.
Posted 7/1/2008 2:26 PM (GMT 0)
Nikin, If you can get her on the Charity Program, maybe they will stsrt treating her again. It's worth a try.

Carol
Posted 7/1/2008 3:39 PM (GMT 0)

Hello Nikim19,

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,

Toni

Posted 7/1/2008 10:19 PM (GMT 0)

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.

Good luck!

Connie

Posted 7/1/2008 11:55 PM (GMT 0)
Hi Nikim, I agree with Connie. It sounds like there are some things that maybe your mother didn't understand when they were explaining them to her. Does anyone go to the appointments with her? My husband gets very confused and even forgets what the doctors tell him. I wouldn't know anything if I had to rely on what he told me.
Posted 7/2/2008 3:29 AM (GMT 0)
There are aspects of liver transplantation description

Please ask administrator for permission before posting links to other sites/forums.

Post Edited By Moderator (Pink Grandma) : 7/1/2008 10:48:58 PM (GMT-6)

Posted 7/2/2008 3:34 AM (GMT 0)

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.

Connie

Posted 7/2/2008 4:58 AM (GMT 0)
Yadie, It would have been nice if you introduced yourself to us. With your just posting a link to another site..........kind of smells like spam to me.
I have alerted our administrator and he will make the call if it's spam or if he thinks you should be able to post it.
Posted 7/2/2008 4:34 PM (GMT 0)
Hello,

    Connie, what you overheard about the living donor Liver Transplants are correct. Wil's dad was wanting to donate a portion of his Liver, in April we were told that it was not an option as unfortunately the statistics on the donors survival was not good! As far as other organs they are having better success.

There are some hospitals that will still do the Live Donor Liver Transplant but, the recipeant has to have a minimum million dollar insurance coverage with no transplant limit to cover both patients. Medicaid will not cover for live donors period.

Nikim19, I hope you are getting the answers you need and the help for your mom. Good luck and know you are in our thoughts and prayers!

 Huggs and smooches,

        Toni

 

Posted 7/2/2008 5:59 PM (GMT 0)

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.

Hugs,

Connie

Posted 2/27/2011 3:40 PM (GMT 0)
my friend in the usa her hubby needs a liver transplant but was denied insurance
Posted 2/27/2011 7:17 PM (GMT 0)
Not a knock on your mother, but all you're aware of is her interpretation of what was said to her. Maybe the part about being depressed is what stuck with her, not her other possible medical problems. People tend to hear what they choose to. Connie and others are right. You need to find out first-hand.

Live liver transplants aren't done by many hospitals. It takes more expertise, two operating rooms, with more surgeons, nurses, anesthesiologists, etc.. They are more dangerous for the donors, though the mortality rate is only in the 1-2% range. I have a brother I could have asked, but would never impose that on anyone. Had he suggested it, I would have had to think long and hard about accepting an offer.
Posted 2/27/2011 7:54 PM (GMT 0)
Djdarkone, you certainly pulled up a very old thread.  Was there some information you were seeking?  What brought you to this forum?
Posted 2/27/2011 8:36 PM (GMT 0)
I am here to help a friend also a dj whose hubby needs a liver transplant but was denied insurance. Various search browsers brought me to here
Posted 2/27/2011 9:20 PM (GMT 0)
DJ, thanks for the information.  You might want to start a new thread by clicking on New Topic.  You will get more responses that way.  BTW, has he filed for SSI?  If approved, then he would get Medicaid automatically.

Hugs,

Connie

Posted 2/28/2011 3:01 PM (GMT 0)
ty for the answer
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