Difficulty getting listed-time running out

Posted by aa4 @aa4, Nov 21, 2022

My wife is 63 yo and has end stage liver disease with MELD of 33. She's hospitalized now and has been in 8 times since August. Last hospitalization she completed all prerequisites for listing but committee deferred her pending more discussion and additional evaluation by psychology. We're running out of time as you can imagine. Has anyone encountered such a situation or had to look quickly to other near-by programs for listing consideration? Do they require repeat of the evaluation criteria or will they accept what's been done? She's quite frail and can't really do outpatient appointments at this point. I've placed calls to a few places but waiting for call backs.

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I have not but thoughts and prayers for your wife.

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Welcome @aa4, You must be so concerned for your wife. I know you want the best for her. Do you live far from the hospital? I hope you are also able to keep up your sleep and health as you care for your wife and, undoubtedly, worry about her.

From my limited understanding, it is not likely that another institution or transplant center would evaluate someone by video consult, who is in the hospital elsewhere. In hospitalized situations, you and your wife would have to request that her doctors contact another facility or transplant center. This would facilitate the transfer of medical information and, if possible, the transfer between hospitals. The other hospital would likely only do that if they can offer something the current hospital can’t.

At Mayo Clinic, we accept testing and evaluations that have been done already as long as the information is current and testing of high quality. We would only repeat tests that our experts consider necessary to update for optimal care.

If you would like your wife's current doctors to consult with Mayo Clinic transplant experts, they can call this 24/7 number – 507-284-2511 – and ask to speak to the liver transplant doctors on-call.

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So sorry to hear this for you and your wife, 🙏🏻🙏🏻 that they get things figured out soon for you all, I to am not familiar with the protocol.

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@aa4 last year, from March-October I was diagnosed with autoimmune liver disease and my MELD reached 32. I had multiple episodes of hepatic encephalopathy and recurrent fevers of unknown origin. I was hospitalized 14 times. My listing was somewhat delayed as I had a terrible episode of HE while driving and police accused me of driving drunk. Lab results proved I was not, but this accusation haunted me and my liver team went over me with a fine tooth comb making sure I was emotionally stable. I’m very emotionally stable so it was maddening. I was scared for my life. In my own careful way I started begging. My 85 year old mother tore through the hospital one day demanding I receive this care. Oct 1 or so I was listed, I was so sick, and Oct 28 I got The Call.

I am so sorry you and your wife are struggling and worrying. It’s ok to be bold and ask for clarity and speed. I’ll be thinking of you and hope you’ll keep us all posted. Godspeed.

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I am so sorry to hear this. I know exactly what it is like to have HE.
Yes please keep us posted on how things are going..😊

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I will pray for your wife. Your prayer will be heard, have no doubt. Judging from your post, I feel that in navigating through this maze of a trial, you need someone in the know. Given your circumstances, your best bet is sticking to Colleen's ( the Connect director) recommendations. You never know through whom the Almighty speaks to you. Keep the faith in Him. At this stage you have no one but Him only. I wish your wife (& you) the best.

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@colleenyoung

Welcome @aa4, You must be so concerned for your wife. I know you want the best for her. Do you live far from the hospital? I hope you are also able to keep up your sleep and health as you care for your wife and, undoubtedly, worry about her.

From my limited understanding, it is not likely that another institution or transplant center would evaluate someone by video consult, who is in the hospital elsewhere. In hospitalized situations, you and your wife would have to request that her doctors contact another facility or transplant center. This would facilitate the transfer of medical information and, if possible, the transfer between hospitals. The other hospital would likely only do that if they can offer something the current hospital can’t.

At Mayo Clinic, we accept testing and evaluations that have been done already as long as the information is current and testing of high quality. We would only repeat tests that our experts consider necessary to update for optimal care.

If you would like your wife's current doctors to consult with Mayo Clinic transplant experts, they can call this 24/7 number – 507-284-2511 – and ask to speak to the liver transplant doctors on-call.

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Ms Young your reply and information is very much appreciated. My wife is listed now! What an ordeal; she is still in hospital and quite sick. A;; providers are working well together so we hope and pray something good will happen. Thank you!

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@katebw

@aa4 last year, from March-October I was diagnosed with autoimmune liver disease and my MELD reached 32. I had multiple episodes of hepatic encephalopathy and recurrent fevers of unknown origin. I was hospitalized 14 times. My listing was somewhat delayed as I had a terrible episode of HE while driving and police accused me of driving drunk. Lab results proved I was not, but this accusation haunted me and my liver team went over me with a fine tooth comb making sure I was emotionally stable. I’m very emotionally stable so it was maddening. I was scared for my life. In my own careful way I started begging. My 85 year old mother tore through the hospital one day demanding I receive this care. Oct 1 or so I was listed, I was so sick, and Oct 28 I got The Call.

I am so sorry you and your wife are struggling and worrying. It’s ok to be bold and ask for clarity and speed. I’ll be thinking of you and hope you’ll keep us all posted. Godspeed.

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Thank you for sharing. Your journey is inspirational. My wife is listed now but still quite ill and in hospital. I pray for a similar result as you.

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@aa4

Thank you for sharing. Your journey is inspirational. My wife is listed now but still quite ill and in hospital. I pray for a similar result as you.

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@aa4, I'm late to this conversation and I join the others who have offered positive thoughts and prayers. I was 60 when I got my liver and kidney, in 2009. I was also extremely ill, hospitalized, and inactivated from the transplant list for a couple of months before being eligible for reactivation. It was a difficult time for me and for my husband. I feel comfortable to assure you that being in the hospital is the best place you your wife. I am glad to hear that she is now on the waiting list. 🤍

How are you getting along? Are you able to get some sleep? Are you eating? Do circumstances like distance, and hospital safety restrictions allow you to be with your wife?

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