Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@nanaking

He was getting care at UK an I moved him up to OH They have him on meds. But he is getting defiant with me. I don't know how to get him taken care of. We do have a referral through UK My name is Kimalene King. I should have said that first. He was on the transplant list an he told them he didn't have family. He thought we would have to pay. Can you please set me in the right direction.
Thank you for your help

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Hi nanaking. I am sorry that you are facing uncertainty about what top do for your brother. I am a volunteer mentor, and also a transplant recipient.
You said that your brother has a referral through UK. Where did they refer him? That is where I would start. I think that you should follow up on that referral and get an appointment. I also think you should contact the insurance carrier and talk to someone about what kind of coverage he has, as well as how much he or the family will be responsible for. The center where he will be seen should be able to help you with this, too.
Is his defiance a normal behavior for him? Since he has moved away from UK, has had any follow-up by a doctor?

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Thank you for responding to me. James is covered by ins. that is what we were waiting for. UK will give us all the testing info. The med.s info everything UC would need or want. My question is who do I need or how do I need to get an appointment to get things started. I am sorry for going about it this way 15 yrs ago I had a brain aneurysm in the center of my brain sometimes it just doesn't allow me to do what I need to do I'm not quite so elegant as I had been before. Not an excuse I just need help time to time. My Brother don't understand how he can go from a working man to nothing. He wants to go to work an is unable. He has applied for disability an we are waiting to hear. Thank you for your time and help Kim

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@nanaking

Thank you for responding to me. James is covered by ins. that is what we were waiting for. UK will give us all the testing info. The med.s info everything UC would need or want. My question is who do I need or how do I need to get an appointment to get things started. I am sorry for going about it this way 15 yrs ago I had a brain aneurysm in the center of my brain sometimes it just doesn't allow me to do what I need to do I'm not quite so elegant as I had been before. Not an excuse I just need help time to time. My Brother don't understand how he can go from a working man to nothing. He wants to go to work an is unable. He has applied for disability an we are waiting to hear. Thank you for your time and help Kim

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Kim, I have found this information about contacting UC's transplant center. (It is a confusing site)

-In top right you will find a phone number for liver transplant department and an online contact form.

– If you scroll to bottom you will come to a link to schedule a consult.

Is there any reason that UK did not do this already? They should be able to make contact and referral for him.

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@nanaking

Thank you for responding to me. James is covered by ins. that is what we were waiting for. UK will give us all the testing info. The med.s info everything UC would need or want. My question is who do I need or how do I need to get an appointment to get things started. I am sorry for going about it this way 15 yrs ago I had a brain aneurysm in the center of my brain sometimes it just doesn't allow me to do what I need to do I'm not quite so elegant as I had been before. Not an excuse I just need help time to time. My Brother don't understand how he can go from a working man to nothing. He wants to go to work an is unable. He has applied for disability an we are waiting to hear. Thank you for your time and help Kim

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Kim,
Is your brother getting any medical care during this interval between UK and now? Sometimes the symptoms of liver disease and liver failure can cause mental changes and need to be monitored and treated by liver doctor or gastroenterologist (GI).
My health changed over a period of months, and it is frightening. I imagine that your brother is frustrated by the changes happening.
I did not apply for disability because I had already retired. I hope he hears from them soon.

Here is some information about Liver Disease he might want to look at.
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502

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@nanaking

He was getting care at UK an I moved him up to OH They have him on meds. But he is getting defiant with me. I don't know how to get him taken care of. We do have a referral through UK My name is Kimalene King. I should have said that first. He was on the transplant list an he told them he didn't have family. He thought we would have to pay. Can you please set me in the right direction.
Thank you for your help

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Hi @nanaking, you'll notice that I removed your phone number and your brother's full name. Connect is a public forum, so we recommend not sharing personal identifying information of others or personal contact information. I'm glad you've connected with others here.

Liked by jerrydrennan

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Yes he is being treated

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@nanaking

Thank you for responding to me. James is covered by ins. that is what we were waiting for. UK will give us all the testing info. The med.s info everything UC would need or want. My question is who do I need or how do I need to get an appointment to get things started. I am sorry for going about it this way 15 yrs ago I had a brain aneurysm in the center of my brain sometimes it just doesn't allow me to do what I need to do I'm not quite so elegant as I had been before. Not an excuse I just need help time to time. My Brother don't understand how he can go from a working man to nothing. He wants to go to work an is unable. He has applied for disability an we are waiting to hear. Thank you for your time and help Kim

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@nanaking It sounds as if you heading in the right direction, and @rosemarya is such a great help. I am sure if you follow her suggestions you will be on the right track.
I hope your brother will be cooperative, and his defiance will not stand in the way of getting him the help he needs.
JK

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@nanaking

Yes he is being treated

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Kim, He is very fortunate to have a sister like you to take on a caregiving role and get the connections and details arranged for him. I imagine that right now he is overwhelmed with worry and not feeling good, either.
Was the contact information helpful for you?

Please tell me what I can do to lend support for you or for him. I try to check my messages regularly and be available.

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@rosemarya

Kim, He is very fortunate to have a sister like you to take on a caregiving role and get the connections and details arranged for him. I imagine that right now he is overwhelmed with worry and not feeling good, either.
Was the contact information helpful for you?

Please tell me what I can do to lend support for you or for him. I try to check my messages regularly and be available.

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@nanaking @rosemarya Rosemary is a big step ahead of me on this, but I too will do whatever I can to help you and to lend support. I too have been through a liver transplant due to NASH cirrhosis so I know how overwhelming everything can be.
JK

Liked by jerrydrennan

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I suggest you have military retirees n veterans section
We have vet care which is not worthy in my opinion but some give vets choice to go civil care
Retirees have tricare n tricare for life
But I’ve waited 6 years for care
The va treatetme for diabetes when it was liver failure
Now it may be too late

Liked by jodeej, jerrydrennan

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@banzai

I suggest you have military retirees n veterans section
We have vet care which is not worthy in my opinion but some give vets choice to go civil care
Retirees have tricare n tricare for life
But I’ve waited 6 years for care
The va treatetme for diabetes when it was liver failure
Now it may be too late

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Hi, banzai. I want to extend a welcome to Mayo Connect. I don't know to whom you are directing your post about a veteran's section, Did you mean to inquire about one in your area?
I am glad that you found Connect because Mayo Clinic Connect is an online community so it is available to you anywhere, anytime.
Welcome and thank you for your service to our country.

How are you feeling? Is your diabtes controlled? How can we help you?

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@rosemarya

Hi, banzai. I want to extend a welcome to Mayo Connect. I don't know to whom you are directing your post about a veteran's section, Did you mean to inquire about one in your area?
I am glad that you found Connect because Mayo Clinic Connect is an online community so it is available to you anywhere, anytime.
Welcome and thank you for your service to our country.

How are you feeling? Is your diabtes controlled? How can we help you?

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I was treated for diabetes but didn’t have it
It was liver failure

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@banzai

I was treated for diabetes but didn’t have it
It was liver failure

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That’s too bad. Are you seeing a gastroenterologist?

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Yes he gives pills
I’m going use alt meds

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