Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@btg

Well, I have a date in Phoenix. My first VERY full day of appointments is April 18th. We’ll leave a couple days earlier so we can check in and get settled. Looking like at least a full week, likely a little bit longer to complete the assessment process at Mayo. They said that with my MELD score where it is they will more than likely ask us to stay in hopes of a transplant soon thereafter. I have a few more tests out here for them then we put the sails up and go. I’ll update when I can, and thank you all for not only being here but for your support. Be well and safe until then…

Bryan

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Best of luck to you, Brian. So glad you are able to move on with your transplant journey. Wishing you much health, happiness and renewed strength.

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@btg

Well, I have a date in Phoenix. My first VERY full day of appointments is April 18th. We’ll leave a couple days earlier so we can check in and get settled. Looking like at least a full week, likely a little bit longer to complete the assessment process at Mayo. They said that with my MELD score where it is they will more than likely ask us to stay in hopes of a transplant soon thereafter. I have a few more tests out here for them then we put the sails up and go. I’ll update when I can, and thank you all for not only being here but for your support. Be well and safe until then…

Bryan

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I had my transplant 11/10/19 at Mayo Jacksonville...during the entire experience, I have never felt so cradled in love and confidence...stay positive!!! Blessings & prayers to you 🙏❤

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@btg

Well, I have a date in Phoenix. My first VERY full day of appointments is April 18th. We’ll leave a couple days earlier so we can check in and get settled. Looking like at least a full week, likely a little bit longer to complete the assessment process at Mayo. They said that with my MELD score where it is they will more than likely ask us to stay in hopes of a transplant soon thereafter. I have a few more tests out here for them then we put the sails up and go. I’ll update when I can, and thank you all for not only being here but for your support. Be well and safe until then…

Bryan

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@btg - Brian, Just want to pop in to say "Hello". I hope you and your wife are settled in and ready for the many appointments and the stacks of information (if they still use paper).
I'm thinking of you, as I recall my own evaluation process. It is an adventure !

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@rosemarya

@rrichardparker, I want to re-welcome you to Connect. It has been a while since I have seen you in the transplant group. I am also a transplant recipient. I joined Mayo Connect because I wanted to meet and to learn from other transplant patients. I learned that as a recipient, I can share my own experiences to help others along their own journey. I have a feeling that you have learned a lot from your transplant, as well as how to manage your self care for 6 post transplant years.

Are you interested in supporting others who are like yourself?
I invite you to look thru the transplant discussions that are happening because there have been a lot of new members and conversations. You are always welcome to join in anywhere, with your own comments, questions, and helpful suggestions.
How can I help you get started?

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Hola RoseMary, gracias por tus comentarios.
Soy Rogelio de la torre, mexicano y vivo en la ciudad de Querétaro, México.
Hace un año y medio me detectaron un tumor neuroendócrino primario en intestino con metástasis en hígado etapa IV y durante ese tiempo he recibido diferentes tratamientos para evitar que el tumor en el hígado siga creciendo, sin embargo es muy probable que requiera de un transplante de hígado a mediano plazo (seis meses).
Quisiera saber de personas que hayan vivido algo similar; cáncer de hígado y posteriormente trasplante del mismo.
Desconozco los efectos de los medicamentos inmunodepresores que suministran para evitar el rechazo del hígado transplantado y el tiempo que se puede vivir con un hígado transplantado.
Desconozco si hay estadísticas del promedio de vida en personas con esta afección, ojalá alguien pudiera aportar información al respecto.
Deseo de todo corazón que puedas vivir muchos años mas con una excelente calidad de vida!

Muchas Gracias!

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@rogero

Hola RoseMary, gracias por tus comentarios.
Soy Rogelio de la torre, mexicano y vivo en la ciudad de Querétaro, México.
Hace un año y medio me detectaron un tumor neuroendócrino primario en intestino con metástasis en hígado etapa IV y durante ese tiempo he recibido diferentes tratamientos para evitar que el tumor en el hígado siga creciendo, sin embargo es muy probable que requiera de un transplante de hígado a mediano plazo (seis meses).
Quisiera saber de personas que hayan vivido algo similar; cáncer de hígado y posteriormente trasplante del mismo.
Desconozco los efectos de los medicamentos inmunodepresores que suministran para evitar el rechazo del hígado transplantado y el tiempo que se puede vivir con un hígado transplantado.
Desconozco si hay estadísticas del promedio de vida en personas con esta afección, ojalá alguien pudiera aportar información al respecto.
Deseo de todo corazón que puedas vivir muchos años mas con una excelente calidad de vida!

Muchas Gracias!

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Hi @rogero, You may also be interested in this related discussion:
- Liver cancer: I'm weighing treatment options including transplant https://connect.mayoclinic.org/discussion/liver-cancer-1/

@kathycaudle and @contentandwell had liver cancer and transplant. @alfonso22 is considering transplant as a treatment option, I’m hoping they can answer some of your questions.

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Hey there! Sorry so long to get back to you, last week we were here going through the plethora of various appointments they had for me, and it was a busy week. This week we were on pins and needles waiting to hear from Mayo if they were going to list me or if we were going home. Got the call late afternoon yesterday that they were going to list me and wanted me to stay! So this morning got my labs for listing and it is now official. I am now on the clock and waiting for the call, we’ll see how long it takes but extremely thankful for being listed and for the contact with everyone here in the beginning of this process.

All my best, wish me luck!

Bryan

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@btg

Hey there! Sorry so long to get back to you, last week we were here going through the plethora of various appointments they had for me, and it was a busy week. This week we were on pins and needles waiting to hear from Mayo if they were going to list me or if we were going home. Got the call late afternoon yesterday that they were going to list me and wanted me to stay! So this morning got my labs for listing and it is now official. I am now on the clock and waiting for the call, we’ll see how long it takes but extremely thankful for being listed and for the contact with everyone here in the beginning of this process.

All my best, wish me luck!

Bryan

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@btg, I'm throwing **confetti**. So good to hear your update of getting on the list.

Here are a couple of discussions full of tips from fellow members that you might find helpful:
- Waiting for the Call: What needs to get done at home before you go? https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
- Packing question: What did you have ready for "the call"? https://connect.mayoclinic.org/discussion/packing-question/

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@btg

Hey there! Sorry so long to get back to you, last week we were here going through the plethora of various appointments they had for me, and it was a busy week. This week we were on pins and needles waiting to hear from Mayo if they were going to list me or if we were going home. Got the call late afternoon yesterday that they were going to list me and wanted me to stay! So this morning got my labs for listing and it is now official. I am now on the clock and waiting for the call, we’ll see how long it takes but extremely thankful for being listed and for the contact with everyone here in the beginning of this process.

All my best, wish me luck!

Bryan

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@btg - Brian, this is wonderful news! You have the best reason for being long to get back.
Getting all of those tests and waiting for results is exhausting - and stressful. Maybe you can sleep well tonight!
As you have time to process all that you have been through, remember that myself and all our wonderful transplant recipient members are here to accompany you on your journey.

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Hello all!

I am just getting up after my first night’s sleep in our hotel since surgery! After I messaged you that I was listed two weeks ago, I received two offers. On the first I got to the hospital and was ready to go in pre-op when I was told that the donor did not progress fast enough. 1st dry run, which I expected might happen. The next day I received another that I found out the follow morning was also off. So, headed to Mayo that morning last Friday for my final labs of the week. While checking in I got another call from procurement asking me to instead go the the hospital to get admitted. It was finally a GO!

I was discharged on day four post op! My new liver has kicked in like it was where it needed to be to keep me alive and well. So far, all my numbers have have balanced or on their way to being where they need to be.

Sorry for being so long winded but, I can’t even explain how happy, incredible, fortunate and blessed I am after this life changing series of events. To be laying here in bed five days since transplant is an absolute miracle in my life. I pray for the donor and his family daily and will cherish and nourish my new liver like no other. The donor and his family have given me a new life that means more to me, my wife, my family and friends than my words can even begin to describe. I am truly blessed. This experience has changed me in ways that I could ever explain.

Again, thank you for your support and being there for me from the beginning. I’ve never met any of you but you will all be remembered. Thank you.

Bryan

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@btg

Hello all!

I am just getting up after my first night’s sleep in our hotel since surgery! After I messaged you that I was listed two weeks ago, I received two offers. On the first I got to the hospital and was ready to go in pre-op when I was told that the donor did not progress fast enough. 1st dry run, which I expected might happen. The next day I received another that I found out the follow morning was also off. So, headed to Mayo that morning last Friday for my final labs of the week. While checking in I got another call from procurement asking me to instead go the the hospital to get admitted. It was finally a GO!

I was discharged on day four post op! My new liver has kicked in like it was where it needed to be to keep me alive and well. So far, all my numbers have have balanced or on their way to being where they need to be.

Sorry for being so long winded but, I can’t even explain how happy, incredible, fortunate and blessed I am after this life changing series of events. To be laying here in bed five days since transplant is an absolute miracle in my life. I pray for the donor and his family daily and will cherish and nourish my new liver like no other. The donor and his family have given me a new life that means more to me, my wife, my family and friends than my words can even begin to describe. I am truly blessed. This experience has changed me in ways that I could ever explain.

Again, thank you for your support and being there for me from the beginning. I’ve never met any of you but you will all be remembered. Thank you.

Bryan

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Brian, Congratulations!
Your words perfectly express the miracle of receiving an organ transplant. My eyes filled with tears of happiness as I read your account from your hotel room.
I am filled with joy are hearing of your news. I expect that your schedule is busy and I know that you will need to catch up on your rest while you recover from
surgery.
I look forward to updates!

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