1. < Transplants

Liver transplant canceled due to valve calcification: I'm lost

Posted by jmp1234 @jmp1234, Jun 12 5:34pm

I was told the after a year of tests and trips to Jacksonville and surgical
procedures, my transplant has been permanently canceled. Mayo no can do. This is due to an unspecified liver "valve" calcification which makes the transplant unable to move forward. M partner and I are crushed, and I asked my transplant coordinator if I should just go home and wait to die. This was our last ditch attempt to keep me alive. I am lost . Any one have a similar experience or know anyone who has please speak up. TY

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jmp1234 | @jmp1234 | Jun 13 9:01am
In reply to @jmp1234 "TY for the sharing of your experience. Working with tampa general and face to face with..." + (show)
@jmp1234

TY for the sharing of your experience. Working with tampa general and face to face with jacksonville staff in one hour. Gastro and cardio are calling back in a few to discuss current meds and therapies. Ty

Jump to this post

Yea..... I just can't stop fighting and seeking a better solution. Ty

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jmp1234 | @jmp1234 | Jun 13 9:06am
In reply to @glover "I'm in tears reading this. May the Lord keep and preserve you while providing comfort and..." + (show)
@glover

I'm in tears reading this. May the Lord keep and preserve you while providing comfort and strength. You already are strong. Don't ever doubt that.

Silence is rarely an acceptable answer. Are you able to review the documentation about the decision along with information about the calcified value in the Portal? It may not change the situation but should bring some better understanding. If not, try here to get some help.
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Mayo is only one place, as you've read already. Keep seaching, keep fighting, and stay strong.

You are in my prayers,
Dave

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Face to face with deciding group and all docs will be in my possession in about an hour with detailed descriptions. Tampa general hospital is now being investigated .ty again

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1 reply
lsheerin | @lsheerin | Jun 14 6:37am
In reply to @jmp1234 "Face to face with deciding group and all docs will be in my possession in about..." + (show)
@jmp1234

Face to face with deciding group and all docs will be in my possession in about an hour with detailed descriptions. Tampa general hospital is now being investigated .ty again

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I am so glad to hear you are moving forward and have contacted different hospitals. You mentioned Tampa is being investigated? If this is about the data breach, please do not let that stop you. My husband was so ill. I really did not know what the outcome of the situation was going to be. They were always so positive and upbeat. Never negative. They didn't pull any punches. We always know the seriousness of the situation, but they kept our spirits up. I'm a pretty picky person and I can't say one thing bad from the surgeon, anesthesiologist, nurses, down to the person who cleaned the room. Everyone was wonderful They called me every night around 9:00pm to let me know he was doing well and to get some sleep. The call us weekly now to check on his meds and they mail them right to our house.
I wish you the best. Keep fighting and keep your spirits up. You will come thru this with a new lease on life. Please keep the updates coming.

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plzhelp | @plzhelp | Jun 14 3:57pm

You're going to live!!! Never mind what they say. You know it's not your time. I did it. You are a gift. Never give up pls.

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jmp1234 | @jmp1234 | Jun 15 8:59am

Ty. We are now interviewing with university of miami, and tampa general hospital for liver transplant programs.

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katgob | @katgob | Jun 15 2:40pm

jmp1234
That is great. Praying for you.

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myfablife | @myfablife | Jun 16 12:25pm

Try Moffitt Tampa Fl? I mean it just sounds strange to tell you flat out no. You need to get answers.
Good luck. Don’t give up!!💚

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1 reply
jmp1234 | @jmp1234 | Jun 16 3:30pm
In reply to @myfablife "Try Moffitt Tampa Fl? I mean it just sounds strange to tell you flat out no...." + (show)
@myfablife

Try Moffitt Tampa Fl? I mean it just sounds strange to tell you flat out no. You need to get answers.
Good luck. Don’t give up!!💚

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I did get details and clarification. Ty for your response.

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1 reply
lsheerin | @lsheerin | Jun 27 4:42pm
In reply to @jmp1234 "I did get details and clarification. Ty for your response." + (show)
@jmp1234

I did get details and clarification. Ty for your response.

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How are you doing? Have you found a hospital to work with? We are all pulling for you.

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