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!

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seahorstmayo | @seahorstmayo | Mar 5, 2020
In reply to @beckyy39 "Good evening all! I've been researching some information and used a MELD score calculator and it..." + (show)
@beckyy39

Good evening all! I've been researching some information and used a MELD score calculator and it says my MELD score is 14 but one of the exceptions said if you have portal hypertension (which I do) the score starts at 22. Does this mean my score is 22? The labs I based it on were done last Friday.

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I just had my transplant because of exception points due to a tumor. But I never heard of one for hypertension. You need to be in contact with your team about it. Only they will be able to tell you what your score is according the transplant gods.

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beckyy39 | @beckyy39 | Mar 5, 2020
In reply to @seahorstmayo "I just had my transplant because of exception points due to a tumor. But I never..." + (show)
@seahorstmayo

I just had my transplant because of exception points due to a tumor. But I never heard of one for hypertension. You need to be in contact with your team about it. Only they will be able to tell you what your score is according the transplant gods.

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I don't have regular hypertension, I have portal hypertension which is the build up of pressure in the veins in the liver and the veins that bring blood to/from the liver. I also have a low platelet count. It has ranged from the 40's to 60's recently meaning I don't clot easily and have random bruising happening even without impact to the skin. I right now have a large bruise not healed where an IV was placed on February 2 for an inpatient visit.

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beckyy39 | @beckyy39 | Mar 5, 2020
In reply to @amyintucson "I had portal hypertension and that didn't numerically affect the score but was an extra consideration...." + (show)
@amyintucson

I had portal hypertension and that didn't numerically affect the score but was an extra consideration. Remember, its not only about the MELD score. Have you had any esophageal varices and what grade? In a 3-5 year period before and during listing I had about 15 upper endoscopies, and in 10 of those procedures I had 2-4 varices banded each time. I became good friends with the staff at my local hospital GI lab!

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In my last endoscopy, I had varices grade 3 but none were banded that I know of.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 5, 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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@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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 5, 2020
In reply to @racing212 "Thank you... Sounds like I'll be out tomorrow" + (show)
@racing212

Thank you... Sounds like I'll be out tomorrow

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@racing212, I want to check on you. Are you at home yet? Will you be able to get to youe appointment in Rochester later this month?
My fingers are crossed 🤞 for you.

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racing212 | @racing212 | Mar 5, 2020
In reply to @rosemarya "@racing212, I want to check on you. Are you at home yet? Will you be able..." + (show)
@rosemarya

@racing212, I want to check on you. Are you at home yet? Will you be able to get to youe appointment in Rochester later this month?
My fingers are crossed 🤞 for you.

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Thank you. I am home now and i still plan on going to Rochester the 16th

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 5, 2020
In reply to @racing212 "Thank you. I am home now and i still plan on going to Rochester the 16th" + (show)
@racing212

Thank you. I am home now and i still plan on going to Rochester the 16th

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@racing212, Awesome!

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jeanne5009 | @jeanne5009 | Mar 5, 2020
In reply to @beckyy39 "I don't have regular hypertension, I have portal hypertension which is the build up of pressure..." + (show)
@beckyy39

I don't have regular hypertension, I have portal hypertension which is the build up of pressure in the veins in the liver and the veins that bring blood to/from the liver. I also have a low platelet count. It has ranged from the 40's to 60's recently meaning I don't clot easily and have random bruising happening even without impact to the skin. I right now have a large bruise not healed where an IV was placed on February 2 for an inpatient visit.

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@ 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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3 replies
amyintucson | @amyintucson | 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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Happy to hear that the varices receded. It’s good that they are monitoring them to ensure they don’t bleed. They first found 2nd degree varices in 2009 but I think my first banding wasn’t until around 2013.

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amyintucson | @amyintucson | Mar 5, 2020
In reply to @beckyy39 "In my last endoscopy, I had varices grade 3 but none were banded that I know..." + (show)
@beckyy39

In my last endoscopy, I had varices grade 3 but none were banded that I know of.

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@beckyy39 I’m sure they would have told you if they were banded as I had to be more cautious in diet following bandings vs when no bandings were done.

I was given pictures after each of my procedures. Not that I knew what I was looking at but it was cool to see what was happening in my body. My GI doctor (local in Tucson, not a Mayo doc) was excellent in explaining things and keeping on top of them. And she and Mayo shared info so everyone was in the loop.

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