1. < Transplants

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!

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

beckyy39 | @beckyy39 | Mar 5, 2020
In reply to @jeanne5009 "@ beckyy39 Hi! I have portal hypertension too. Just had a EDG n JAX. I had..." + (show)
@jeanne5009

@ beckyy39
Hi! I have portal hypertension too. Just had a EDG n JAX. I had small varices in my prior one that I thought might need banded this time. The Drs said they were hardly there. Likely due to Propanalol. I will be holding on to my Meld 8 as long as I can but they caution me that things could change quickly and that I must be prepared. They found a sissle cyst that we are awaitng biopsy results...always something...

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I'm on propranalol as well for essential tremors but if that helps the portal hypertension that is all the better! I'll be praying for good biopsy results for you!

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1 reply
beckyy39 | @beckyy39 | Mar 5, 2020
In reply to @rosemarya "@beckyy39, You are asking good questions! I do hope that you are making a list to..." + (show)
@rosemarya

@beckyy39, You are asking good questions! I do hope that you are making a list to have with you next week.
Here are some discussions that I want to point out because they are about some of the things that you have mentioned.

Pages >Transplant >Transplant Physicians and Local Physicians: A Partnership to Provide Best Care to Every Patient
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-physicians-and-local-physicians-a-partnership-to-provide-best-care-to-every-patient/

Pages > Transplant > Q&A for Out-of-State Patients
https://connect.mayoclinic.org/page/transplant/newsfeed-post/qa-for-out-of-state-patients/

Groups >Transplants > It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/

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Rosemary I so appreciate the support and information you provide. The process alone is so scary and having others that have been or are going through the same thing brings great comfort and information for a better outcome.

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1 reply
amyintucson | @amyintucson | Mar 5, 2020
In reply to @beckyy39 "Rosemary I so appreciate the support and information you provide. The process alone is so scary..." + (show)
@beckyy39

Rosemary I so appreciate the support and information you provide. The process alone is so scary and having others that have been or are going through the same thing brings great comfort and information for a better outcome.

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The support and info here made the waiting easier. I haven't been on here much post-transplant but I'm trying to be more vocal so I can help others as I was helped.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 6, 2020
In reply to @jeanne5009 "@ beckyy39 Hi! I have portal hypertension too. Just had a EDG n JAX. I had..." + (show)
@jeanne5009

@ beckyy39
Hi! I have portal hypertension too. Just had a EDG n JAX. I had small varices in my prior one that I thought might need banded this time. The Drs said they were hardly there. Likely due to Propanalol. I will be holding on to my Meld 8 as long as I can but they caution me that things could change quickly and that I must be prepared. They found a sissle cyst that we are awaitng biopsy results...always something...

Jump to this post

@jeanne5009, I'm hoping for a good biopsy result.
Did your doctors tell you what symptoms or signs that you might experience if things change quickly?

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JK | @contentandwell | Mar 6, 2020
In reply to @beckyy39 "I've been considering the moving situation and will be asking at my evaluation next week if..." + (show)
@beckyy39

I've been considering the moving situation and will be asking at my evaluation next week if I should be near the hospital or if I should be followed locally since I live 100 miles from the hospital. Regardless, I can't move until disability comes through as I have to have proof of income before I can rent a place. All my doctors are local and not at Mayo Clinic.

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@becky39 I really do not know how things go at Mayo, but since having my transplant at Mass General I have switched all of my doctors to doctors there except for my PCP. If Mass General wasn't quite so far I would switch him too. If you were advised to move I would think you could transfer all of your care there, but people familiar with Mayo would know better than I do.
JK

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1 reply
JK | @contentandwell | Mar 6, 2020
In reply to @beckyy39 "I'm on propranalol as well for essential tremors but if that helps the portal hypertension that..." + (show)
@beckyy39

I'm on propranalol as well for essential tremors but if that helps the portal hypertension that is all the better! I'll be praying for good biopsy results for you!

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@becky39 Do you definitely have essential tremors? I was diagnosed with them before being diagnosed with cirrhosis. Shaky hands is a very common symptom of cirrhosis. Since my transplant my hands no longer shake at all. Before I couldn't take pictures because my hands were shaking so much, and getting a spoonful of soup to my mouth was impossible.
JK

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1 reply
Mentor
Dana, Volunteer Mentor | @danab | Mar 6, 2020
In reply to @contentandwell "@becky39 I really do not know how things go at Mayo, but since having my transplant..." + (show)
@contentandwell

@becky39 I really do not know how things go at Mayo, but since having my transplant at Mass General I have switched all of my doctors to doctors there except for my PCP. If Mass General wasn't quite so far I would switch him too. If you were advised to move I would think you could transfer all of your care there, but people familiar with Mayo would know better than I do.
JK

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@beckyy39 Hi i had my transplant at Mayo Phoenix and i had to use as many outside doctors as i could after my first year. I have federal Blue Cross Blue Shield and the coverage for testing, transplant and followup for one year was awesome. Very manageable out of pocket the first year. But during my second year i had issues with viruses and had to use Mayo for at least Heart related issues but the insurance paid at a out of network rate so my out of pocket is huge. So to save money where i could i use as many resources i can outside Mayo for now. I would love to get all my treatment there. Well I'm looking forward to a period when my insurance will change to Medicare with Tricare for life secondary and im told things will be covered much better then. I hope that helps ask any questions you like. But i would probably still keep my pcp but will use Mayo for most everything else if it works out with the insurance.

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beckyy39 | @beckyy39 | Mar 7, 2020
In reply to @contentandwell "@becky39 Do you definitely have essential tremors? I was diagnosed with them before being diagnosed with..." + (show)
@contentandwell

@becky39 Do you definitely have essential tremors? I was diagnosed with them before being diagnosed with cirrhosis. Shaky hands is a very common symptom of cirrhosis. Since my transplant my hands no longer shake at all. Before I couldn't take pictures because my hands were shaking so much, and getting a spoonful of soup to my mouth was impossible.
JK

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I've had shaking in some form all of my adult life and my dad and son also have it.

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1 reply
JK | @contentandwell | Mar 7, 2020
In reply to @beckyy39 "I've had shaking in some form all of my adult life and my dad and son..." + (show)
@beckyy39

I've had shaking in some form all of my adult life and my dad and son also have it.

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@beckyy39 I presume then that it is not caused by cirrhosis, but that could probably exacerbate it. Does propranolol help? Even before I was diagnosed with cirrhosis I was never offered anything to relieve them.
JK

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1 reply
beckyy39 | @beckyy39 | Mar 7, 2020
In reply to @contentandwell "@beckyy39 I presume then that it is not caused by cirrhosis, but that could probably exacerbate..." + (show)
@contentandwell

@beckyy39 I presume then that it is not caused by cirrhosis, but that could probably exacerbate it. Does propranolol help? Even before I was diagnosed with cirrhosis I was never offered anything to relieve them.
JK

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Propranolol completely remedied mine. Before, I couldn't hold a drink without sloshing it, but now my hand is very steady.

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