Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida

Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida

Tue, Oct 8
11:00am to 12:00pm ET

Description

Second Chance is a weekly in-person support group for Mayo Clinic patients and their caregivers pre- and post-transplant of the liver, kidney, and pancreas. Every Tuesday, the group provides support, education, and perspective or insight into the transplant process, especially recovery and life after transplant. Through facilitated discussion, members help members with their specific questions, needs, and concerns.

This support group is hosted on campus at Mayo Clinic Florida.

To connect with fellow transplant patients and caregivers online any time from any where, visit the online Transplants Group on Connect.

Location

In Person

Mayo Clinic
Cannaday Building, Room 1050
4500 San Pablo Rd.
Jacksonville, FL 32224

Questions? Contact:

Michael Womack, LCSW
904-956-3208

How can the public in another state,(MD) hear/see/view this on Tues. Oct.8th? How can we ask questions? Is there a sign up sheet? A log-in?

REPLY

Hi,@rowdyramsey. Welcome to Mayo Connect. I am a liver/kidneytransplant recipient and I live in Central Kentucky, so I am also at a disadvantage due to distance. While we wait for a response to your inquiry, I want to invite you to join me in the discussions on Connect, an online community where you can share your experiences and find support from people like you. You can also read Mayo Clinic expert blogs and take part in educational events.
Rowdyramsey, What brings you to Connect? Are you a Kidney, Liver. or Pancreas patient or caregiver? How can I help you to connect with some related discussions?

REPLY

Thank you for the response. I just saw it! Yes,I need your help. I have an important question to ask. I was amongst the living on July,20th,2015. That’s my transplant date. I was surrounded by death before that date. Oh,I had a liver transplant.
My question is this,how do I post my question to hear others advice? Maybe I will ask you first. I suffered daily for 2-3yrs of hepatic encephalopathy. My ammonia levels ran from 175-210 daily. I was comatose all the time. I believe it has caused permenate brain damage. Short term memory loss and instant memory loss. I can’t cook cause I can’t remember to turn stove off etc.. it’s getting worse. Has anyone experienced this? It started immediately,right after transplant. I’ve seen doctors but no one has given me a diagnosis. The liver team says it’s possible. Other doctors say it’s not. And zero doctors have not cared enough to find out by performing tests. So, can u help or tell me how to post it?

REPLY
@rowdyramsey

Thank you for the response. I just saw it! Yes,I need your help. I have an important question to ask. I was amongst the living on July,20th,2015. That’s my transplant date. I was surrounded by death before that date. Oh,I had a liver transplant.
My question is this,how do I post my question to hear others advice? Maybe I will ask you first. I suffered daily for 2-3yrs of hepatic encephalopathy. My ammonia levels ran from 175-210 daily. I was comatose all the time. I believe it has caused permenate brain damage. Short term memory loss and instant memory loss. I can’t cook cause I can’t remember to turn stove off etc.. it’s getting worse. Has anyone experienced this? It started immediately,right after transplant. I’ve seen doctors but no one has given me a diagnosis. The liver team says it’s possible. Other doctors say it’s not. And zero doctors have not cared enough to find out by performing tests. So, can u help or tell me how to post it?

Jump to this post

@rowdyramsey If the liver team says it's possible I would think they would be the most informed on this. I know nothing about what tests can be performed, but if it is decided that you have suffered some brain damage I think the best next step would be some type of therapy similar to what stroke victims have.
Has the liver team said anything beyond it's possible? I would hope they would give you some guidance on how to handle this.
JK

REPLY

@jodeej – I would like to ask you if you have any suggestions or experience that might be helpful to @rowdyramsey about HE or related symptoms after a liver transplant. I know that he would welcome hearing from you.

REPLY

My post liver team sucks! They never have kept track of me. I go days without my prograph because they screw up my prescriptions all the time. I haven’t seen a liver doctor in over a year. Before that visit it had been a year and a half. I haven’t had my blood test done since Feb. nobody gets on me about that. The liver team has never called me to make sure I’m following directions. It’s been so long that I’m not even sure what I’m suppose to be doing. It’s been a little over 4 yrs now since my transplant. They never call and tell me what I’m to do. I’m not sure at 4 yrs. how often I’m to have my blood drawn. Every 2 months? Every 6 months? I have no clue. They haven’t really followed me at all. This is from the University of Maryland..I have called them and I see them next week. Thier really not interested in doing tests to prove thier theory. That I suffer from brain damage. Problem is disability needs it in writing or they won’t disable me. Like I said,they simply aren’t interested.thanks for sharing your part with me

REPLY

@rowdyramsey, at the moment the weekly support group "Liver, Kidney, Pancreas Transplant – Second Chance" is available only on location at Mayo Clinic campus in Florida. However, you have 24/7 access to support here on Mayo Clinic Connect in the Transplants group https://connect.mayoclinic.org/group/transplants/

I wish you all the best at your medical follow up next week. Keep asking questions. Your medical team is there to serve you.

REPLY
@rowdyramsey

My post liver team sucks! They never have kept track of me. I go days without my prograph because they screw up my prescriptions all the time. I haven’t seen a liver doctor in over a year. Before that visit it had been a year and a half. I haven’t had my blood test done since Feb. nobody gets on me about that. The liver team has never called me to make sure I’m following directions. It’s been so long that I’m not even sure what I’m suppose to be doing. It’s been a little over 4 yrs now since my transplant. They never call and tell me what I’m to do. I’m not sure at 4 yrs. how often I’m to have my blood drawn. Every 2 months? Every 6 months? I have no clue. They haven’t really followed me at all. This is from the University of Maryland..I have called them and I see them next week. Thier really not interested in doing tests to prove thier theory. That I suffer from brain damage. Problem is disability needs it in writing or they won’t disable me. Like I said,they simply aren’t interested.thanks for sharing your part with me

Jump to this post

I hope you appointment next week goes well, @rowdyramsey. Make sure you get the answers you need. If you don’t feel that you can be your own strong advocate, is there anyone who could accompany you and be helpful?
Make sure that you or someone on the team writes everything down that you need to know so you will have that to refer to.
Please let us know how the appointment goes.
JK

REPLY
@contentandwell

I hope you appointment next week goes well, @rowdyramsey. Make sure you get the answers you need. If you don’t feel that you can be your own strong advocate, is there anyone who could accompany you and be helpful?
Make sure that you or someone on the team writes everything down that you need to know so you will have that to refer to.
Please let us know how the appointment goes.
JK

Jump to this post

Thanks!

REPLY
Please login or register to post a reply.