Hi I’m scared for my liver transplant

Posted by shelly63 @shelly63, Wed, Feb 20 3:58am

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

Liked by cehunt57, jodeej

Michelle, that is a scary situation. Do you have friends or family that can help you? One person doesn't have to give you all of it, but if several could help, or maybe they could do a fundraiser for you.
Just some thoughts
Blessings and prayers you get the help you need.
JoDee

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Hi @shelly63 I agree with @jodeej, that is a scary situation, and I think Jodee has some good thoughts about it.
Do you have insurance that will cover a transplant if you do become a transplant candidate? I've never heard of having to give the transplant center money upfront to be listed. I do know they check your resources to see if a transplant would be paid for, it's very costly, as are the post-transplant drugs.

I am surprised that disability would be denied to a person of any age if they have a disability. I don't understand that. Are your disabilities due to the blood syndrome, and do they disable you to a point where you could not be employed in any type of job? I hope you find a solution to your dilemma.
JK

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I have joined the nft organization to fundraising….. and the money is to makes I have the money for pre and post part of the transplant…

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@shelly63

I have joined the nft organization to fundraising….. and the money is to makes I have the money for pre and post part of the transplant…

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@shelly63 good idea in joining the organization. Sometimes something local gets better results. (Just my thoughts.) Do you belong to a church? That could also be a help.

Have you appealed the disability denial? I know sometimes you have to apply 2-3 times before it's approved.

JoDee

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@shelly68 Suggestions below are great. Also, do a Go Fund Me campaign.
Good luck!

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@contentandwell

Hi @shelly63 I agree with @jodeej, that is a scary situation, and I think Jodee has some good thoughts about it.
Do you have insurance that will cover a transplant if you do become a transplant candidate? I've never heard of having to give the transplant center money upfront to be listed. I do know they check your resources to see if a transplant would be paid for, it's very costly, as are the post-transplant drugs.

I am surprised that disability would be denied to a person of any age if they have a disability. I don't understand that. Are your disabilities due to the blood syndrome, and do they disable you to a point where you could not be employed in any type of job? I hope you find a solution to your dilemma.
JK

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I can’t work Bc I been told I can rupture my veins Bc I have multiple blood clot

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I was told by my disability lawyer not to do go fund me page

Liked by cehunt57

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@shelly63

I can’t work Bc I been told I can rupture my veins Bc I have multiple blood clot

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@shelly63 Would it be possible to get a job that you can do from your own home? You mention the nft organization in one of your posts. What is that?
I presume your lawyer does not want you to do a "gofundme" because it might be a problem in getting disability. If that gets denied again would there still be a problem in trying that out? I hope you will get disability though, I simply do not understand an age restriction. A person can be disabled at any age.
JK

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@shelly63

I can’t work Bc I been told I can rupture my veins Bc I have multiple blood clot

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@shelly63, You mentioned that you have a rare blood disorder. Have you tried to look for information and possibility of financial resources that are related to the blood condition?

We have some discussions about blood disorders here on Connect. What is the name of your condition?
Blood Cancers & Disorders – https://connect.mayoclinic.org/group/blood-cancers-disorders/

Shelly,
Have you been able to discuss your concerns with the social worker in the transplant program.
How is your transplant evaluation going?

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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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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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