Hi I’m scared for my liver transplant

Posted by shelly63 @shelly63, Feb 20, 2019

I’m 37 I was a preschool teacher .. the being of last year I was told I had a rare blood syndrome that cause caused me to get stage four liver cirrhosis and would need a transplant... I’m at the end of my transplant evaluation... now the told me I would need 3,000 dollars to be put on the list... I don’t have the money Bc I can’t work and disability keep getting denied Bc of my age ... now I’m scared that since I don’t have that kind money laying around something will happen with my health... ty for listening michelle

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Every transplant candidate has an assigned nurse or social worker, meet with them and ask more questions. I have never heard of giving money to get on a list, you deserve to know the details of where this money is going, hopefully it is a miscommunication. Please keep us posted as you learn more. Best of luck.

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@rodney9999

Hi Michelle,

I’m sorry to hear this. I was transplanted with a meld of 23 and had end stage cirrhosis with a rare form of anemia. Doctors informed me to take any liver I could get so I signed consent for a high risk hep B/C liver. I am currently doing well.

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@rodney9999 Thank you for finding us on Mayo Clinic Connect! How long ago was your transplant, may I ask? We are glad to hear you are doing well.
Ginger

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@jolinda

Every transplant candidate has an assigned nurse or social worker, meet with them and ask more questions. I have never heard of giving money to get on a list, you deserve to know the details of where this money is going, hopefully it is a miscommunication. Please keep us posted as you learn more. Best of luck.

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Hi, when I first looked into being evaluated for LT I talked to a lower level person at a transplant hospital and was told that with the HMO medical insurance I had. They would require up front payment. I found a liver Surgon. The only approved specialist in my plan. He called one of the head liver surgeons at the hospital and did a verbal referral. I recommended finding a liver surgon specialists to refer you for a transplant. I was evaluated at MELD 40 while at Hospital, put on the list , and received a transplant within a week.
Find a specialist that is or was connected to a transplant hospital. As for disability funds. State disability is hard to get.I assume in your case your work did not pay into disability insurance. You are eligible for SSI disability and I recommend meeting with a SSI worker as soon as possible. Ultimately, you will be eligible for Medicare.

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You should not be afraid of your transpant. I was much older than you (58) when I had mine and very very ill. My transplant was proceeded by a broken back and then hip. So I was really in bad shape and had to heal before a transplant could happen. I am surprised if you went to Mayo in Rochester they did not discuss your insurance problem with you. Each Mayo has different procedures with insurance. If you want disability and you have stage 4 you need a disability lawyer. Medicare will ignore you forever. The disability lawyers in MN. can only take a flat fee and only if they succeed. I got $50,000 based on lost wages and years disabiled. They took $5000. So the rest was mine and I have disability from Medicare. Do a lot of research.

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@gingerw

@rodney9999 Thank you for finding us on Mayo Clinic Connect! How long ago was your transplant, may I ask? We are glad to hear you are doing well.
Ginger

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I am post transplant 7 weeks.

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@rodney9999

I am post transplant 7 weeks.

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Hope all is fine! I spent a long time in Mayo Rochester. Almost 6 months with the broken back, broken hip and transplant. I always felt I had the best care possible. My surgeon and his staff were absolutely the best. It took a bit of time and work to get pass the shape my body was in and stronger, you just keep at it. It has been 8 years. You will get better every day. I have yearly checkups now which I actual look forward to because I trust Mayo to do the best possible checkup. I had them a lot closer together but as time went by they were further apart, so now once a year. Take care!

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I think its strange that they are denying you because of your age I was put on disability by my parents when I was a kid I am now 30 and im still on disability

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