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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amyintucson | @amyintucson | Mar 2, 2020
In reply to @beckyy39 "I was in the ER Saturday night with excruciating hip pain due to weight bearing on..." + (show)
@beckyy39

I was in the ER Saturday night with excruciating hip pain due to weight bearing on the leg that has pitting edema from fluid buildup and the doctor at the local ER acted like I was faking just to get pain meds and did a lot of tests but didn't consider any of those findings and told me to take Tylenol and Advil although I told him more than once I couldn't due to liver failure. Prior to my diagnosis in December, I was an auditor and had Blue Cross and after I had to quit working because of 2 admits for HE with complete amnesia....I applied for disability and haven't gotten it yet and I'm having major financial difficulties....I was approved for medicaid but that meant I had to change all my doctors, and wait for referrals. My evaluation was approved by Humana Medicaid prior to the end of my Blue Cross since there was a 1 month overlap. I now won't have my first appointment with a gastro doctor until April 6 after my evaluation. I will be losing my home and car and saved my last check to move with. I'm 30 miles to the nearest medical facility prior to moving and 100 miles to Mayo Clinic Jax. Friends donated to cover my hotel and food for the evaluation trip or I wouldn't be able to go so lots on my plate and much frustration at the moment.

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@beckyy39 - Sad to hear all you are going through. Even though i had good insurance it bothers me that finances can prevent from getting the care they need. I had a friend who died after leaving the ER (his choice - not hospital) the night before because he didnt have insurance/money to cover.

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1 reply
beckyy39 | @beckyy39 | Mar 2, 2020
In reply to @amyintucson "@beckyy39 - Sad to hear all you are going through. Even though i had good insurance..." + (show)
@amyintucson

@beckyy39 - Sad to hear all you are going through. Even though i had good insurance it bothers me that finances can prevent from getting the care they need. I had a friend who died after leaving the ER (his choice - not hospital) the night before because he didnt have insurance/money to cover.

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I hate to hear about your friend, but foremost, I'm pro-active and driven because I have those who need me, and I'm blessed to have many who love me and pray for me daily. I want to leave a legacy for my children and grandchildren that gives them the motivation to chase their dreams and no matter the situation to never give up! As we all have, there are good days and bad days but I want to live to give back because many have given to me and I'm truly blessed!

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racing212 | @racing212 | Mar 2, 2020
In reply to @racing212 "I'm in the hospital now due to HE episode" + (show)
@racing212

I'm in the hospital now due to HE episode

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I've been waiting almost 3 years for a transplant

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2 replies
JK | @contentandwell | Mar 2, 2020
In reply to @amyintucson "Being the hospital is no fun. My meld score was not very high initially but the..." + (show)
@amyintucson

Being the hospital is no fun. My meld score was not very high initially but the secondary issues were tough to deal with. At one point, my amonia level was up to 400 and my doctors were shocked i was coherent. Goes to show how different our bodies react.

Hope to hear hear that you are doing better, perhaps even with a new liver.

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@amyintucson I have never heard of such high ammonia levels! I think my highest was around 200. At that level I was very confused and irrational.
JK

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JK | @contentandwell | Mar 2, 2020
In reply to @racing212 "I've been waiting almost 3 years for a transplant" + (show)
@racing212

I've been waiting almost 3 years for a transplant

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@racing212 that’s a long wait. I hope it happens soon.

@becky39. I think “who is president” must be a standard question. I was asked that too. I said George Bush. Obama was president. There were calendars around so I worked on remembering the date, another standard question..
JK

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amyintucson | @amyintucson | Mar 2, 2020
In reply to @racing212 "I've been waiting almost 3 years for a transplant" + (show)
@racing212

I've been waiting almost 3 years for a transplant

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@racing212 That's a long time for sure. I was on the list about 2 years but took comfort in knowing that those sicker than me were receiving a life saving transplant while I waited. The allocation of organs is one area where money and time are not factors!

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JK | @contentandwell | Mar 4, 2020
In reply to @beckyy39 "I was in the ER Saturday night with excruciating hip pain due to weight bearing on..." + (show)
@beckyy39

I was in the ER Saturday night with excruciating hip pain due to weight bearing on the leg that has pitting edema from fluid buildup and the doctor at the local ER acted like I was faking just to get pain meds and did a lot of tests but didn't consider any of those findings and told me to take Tylenol and Advil although I told him more than once I couldn't due to liver failure. Prior to my diagnosis in December, I was an auditor and had Blue Cross and after I had to quit working because of 2 admits for HE with complete amnesia....I applied for disability and haven't gotten it yet and I'm having major financial difficulties....I was approved for medicaid but that meant I had to change all my doctors, and wait for referrals. My evaluation was approved by Humana Medicaid prior to the end of my Blue Cross since there was a 1 month overlap. I now won't have my first appointment with a gastro doctor until April 6 after my evaluation. I will be losing my home and car and saved my last check to move with. I'm 30 miles to the nearest medical facility prior to moving and 100 miles to Mayo Clinic Jax. Friends donated to cover my hotel and food for the evaluation trip or I wouldn't be able to go so lots on my plate and much frustration at the moment.

Jump to this post

@becky39 I was just going back through the messages and saw this that I had not responded to.
I am sorry that the ER treated you like they did but I don't think that's too unusual these days. They are very reluctant to prescribe any of the prescription pain relievers. I fractured my upper femur in July and the most the ER doctor would give me, and that was with me really pleading with him since I cannot take ibuprofen, was 12 pills.

I'm sorry too for the financial problems you are going through. You are at least very fortunate to have such good friends. I hope your disability comes through soon. When you move will it be to somewhere closer to Mayo Jax? It's tough being so far from the hospital that you need to go to. When you mention going to a gastro, is that a hepatologist within the gastroenterology department? After I was diagnosed up here in southern NH I went to a hepatologist at MGH. That's where I had my transplant. It's about 55 miles away but it can take over two hours some days due to traffic. Most days we can make it in a little over an hour. I go there now for pretty much everything. They have been wonderful.
JK

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1 reply
beckyy39 | @beckyy39 | Mar 4, 2020

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.

REPLY
2 replies
beckyy39 | @beckyy39 | Mar 4, 2020
In reply to @contentandwell "@becky39 I was just going back through the messages and saw this that I had not..." + (show)
@contentandwell

@becky39 I was just going back through the messages and saw this that I had not responded to.
I am sorry that the ER treated you like they did but I don't think that's too unusual these days. They are very reluctant to prescribe any of the prescription pain relievers. I fractured my upper femur in July and the most the ER doctor would give me, and that was with me really pleading with him since I cannot take ibuprofen, was 12 pills.

I'm sorry too for the financial problems you are going through. You are at least very fortunate to have such good friends. I hope your disability comes through soon. When you move will it be to somewhere closer to Mayo Jax? It's tough being so far from the hospital that you need to go to. When you mention going to a gastro, is that a hepatologist within the gastroenterology department? After I was diagnosed up here in southern NH I went to a hepatologist at MGH. That's where I had my transplant. It's about 55 miles away but it can take over two hours some days due to traffic. Most days we can make it in a little over an hour. I go there now for pretty much everything. They have been wonderful.
JK

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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.

REPLY
2 replies
amyintucson | @amyintucson | Mar 4, 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.

Jump to this post

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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