Transplant Evaluation - What to expect

Posted by bamagirlgina @bamagirlgina, Mar 12, 2018

We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!

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@jeanne5009

@Becky39
I think you are going to Mayo Jax
I was there last week for an EDG and Colonoscopy. I have Stage 4 cirrhosis with a Meld of 8. Been this way for 3+ yrs! I have been to the eval. and it is rigorous! You will learn sooo much
Keep notes and write down questions every night you are there.
All of the Drs. are amazing. I have been to 4 on the team. The PAs are very important and your link when you have concerns going forward....they are awesome too.
Let us know how you do and ask me anything.
We may run into each other someday at what I call Disney World for sick people...LOL

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I have about a week and a half to go and the employees here are so helpful! I've had tests done that I didn't know existed! They said my MELD score based on these labs is 15, and I'm so thankful each clinician I saw gave me contact information and have been able to answer all the questions I had so far. I have another week and a half to go, and will be glad to get out of a hotel and go home! (envision Dorothy on Wizard of Oz clicking her shoes saying there's no place like home)! LOL

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@beckyy39

I have about a week and a half to go and the employees here are so helpful! I've had tests done that I didn't know existed! They said my MELD score based on these labs is 15, and I'm so thankful each clinician I saw gave me contact information and have been able to answer all the questions I had so far. I have another week and a half to go, and will be glad to get out of a hotel and go home! (envision Dorothy on Wizard of Oz clicking her shoes saying there's no place like home)! LOL

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@beckyy39 - I wonder why your testing at Mayo-Jax is taking so many more days than mine at Mayo-Phx? Maybe less appts per day?

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@beckyy39

I have about a week and a half to go and the employees here are so helpful! I've had tests done that I didn't know existed! They said my MELD score based on these labs is 15, and I'm so thankful each clinician I saw gave me contact information and have been able to answer all the questions I had so far. I have another week and a half to go, and will be glad to get out of a hotel and go home! (envision Dorothy on Wizard of Oz clicking her shoes saying there's no place like home)! LOL

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@beckyy39 I'm glad it's going well so far. I think I started out with a MELD 18, or maybe it was lower and quickly increased due to malignant lesions. Since I went to Mass General and they are about 55 miles down the highway, my tests were done almost weekly. I remember thinking after each one that I was done and then they would tell me I needed more tests! It took quite a while that way and when they were all done it was a great relief.
JK

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@amyintucson

@beckyy39 - I wonder why your testing at Mayo-Jax is taking so many more days than mine at Mayo-Phx? Maybe less appts per day?

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I was told usually here it takes 3 weeks because they allow extra days in case more testing is needed due to things that might unexpectedly be found during the initial tests, but this coming week, there are 2 days I don't have tests.

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@becky39
Don't hesitate to call scheduling and ask if you can move your schedule around. Let them know you have 2 free days. Sometimes they can do that...stay in touch with them and watch for phone messages. I didn't have those issues but they may have to do different tests.
Who knows...maybe the Corona virus has them tied up..

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@jeanne5009

@becky39
Don't hesitate to call scheduling and ask if you can move your schedule around. Let them know you have 2 free days. Sometimes they can do that...stay in touch with them and watch for phone messages. I didn't have those issues but they may have to do different tests.
Who knows...maybe the Corona virus has them tied up..

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They have been tied up with the corona virus. Residents here are being asked to stay at home after 800 pm unless it's an emergency, and Mayo Clinic has treated some patients. There were only about half the patients and/or visitors I've been seeing last week there today.

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@beckyy39

They have been tied up with the corona virus. Residents here are being asked to stay at home after 800 pm unless it's an emergency, and Mayo Clinic has treated some patients. There were only about half the patients and/or visitors I've been seeing last week there today.

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@beckyy39, Thank you for checking in. I have been thinking about you and wondering what you are experiencing in the midst of this pandemic. Have you any idea if you will be able to finish the evaluation during the planned visit?
Becky, You are going thru much more than anyone of us ever thought was possible. Have you given any thought to keeping a notebook, a diary sort of thing? I think that you are going to have quite a story that I hope you will share with us someday! Seriously, I kept a journal (lots of scribbles and notes) and now, after 10 years, it is a treasure. I never realized that I could forget so much that I had gone thru.

Did you see our new discussion? It started today. You are welcome to share anywhere, but be sure to look at the transplant discussion that is posted there.
https://connect.mayoclinic.org/discussion/covid-19-lets-stick-together-virtually/

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@beckyy39

I have about a week and a half to go and the employees here are so helpful! I've had tests done that I didn't know existed! They said my MELD score based on these labs is 15, and I'm so thankful each clinician I saw gave me contact information and have been able to answer all the questions I had so far. I have another week and a half to go, and will be glad to get out of a hotel and go home! (envision Dorothy on Wizard of Oz clicking her shoes saying there's no place like home)! LOL

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@beckyy39, I want you to meet a new member, @brianna, who is in early stages of evaluation for liver transplant. I think you have the most up-to-date information available because you are in the process.

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@rosemarya

@beckyy39, I want you to meet a new member, @brianna, who is in early stages of evaluation for liver transplant. I think you have the most up-to-date information available because you are in the process.

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I'm in Rochester now and everything came back good and he cancelled my colonoscopy for tomorrow. My meld score dropped from 19 to 13.

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@racing212

I'm in Rochester now and everything came back good and he cancelled my colonoscopy for tomorrow. My meld score dropped from 19 to 13.

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@racing212, Congratulations on the test results! Something is working for you right now. Did you get any good word related to the HE?
Others have mentionesd that they have had procedures delayed due to the Covid-19 and the potential volumes of patients.

Did you see the new discussion? - COVID-19 in Transplant Patients
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/
You can click oin the blue link, and you will be there. I invite you to read and to add any of your own comments.
Be safe.

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