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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beckyy39 | @beckyy39 | Mar 16, 2020

In reply to @rosemarya "@beckyy39, I want you to meet a new member, @brianna, who is in early stages of..." + (show)

@brianna the evaluation is really busy and you will go through a lot of testing to include 30 plus lab tests, chest xray, mri's, ct's, echo cardiograms with and without contrast, egd, and many many consults. Everywhere you go, you will be given a lot of information to keep including personal contacts and resources for anything you might encounter. I had my egd today and plasma transfusion and when I got back to the hotel, I ate, took insulin (which I ran out of with another week to go) and after arranging my pharmacy to overnight insulin, went to sleep for approximately 5-6 hours. Keep track of all the contacts you are given because they are invaluable resources for information. I was scared to death but so glad to be here during this outbreak. Mayo Clinic has stopped all visitors from coming in, and I feel very safe. Also, I had a victory today as I've been unemployed since December and my disability was approved today! One more obstacle has been overcome by my Jesus! My social worker is Michael Womack and he is so very knowledgable! Very blessed in Jacksonville!

racing212 | @racing212 | Mar 17, 2020

In reply to @rosemarya "@racing212, Congratulations on the test results! Something is working for you right now. Did you get..." + (show)

He said if get to the point where my local hospital has to transfer me. He wants me to be transferred to Rochester

Rosemary, Volunteer Mentor | @rosemarya | Mar 17, 2020

In reply to @racing212 "He said if get to the point where my local hospital has to transfer me. He..." + (show)

@racing212, It is good to learn that of you will be sent to Mayo if it happens again. Do you have someone who you have shared that information with? Does your local doctor know? I learned that we have to have someone who can speak up for us when we might be too weak or unable to speak for ourself.

Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2020

In reply to @beckyy39 "@brianna the evaluation is really busy and you will go through a lot of testing to..." + (show)

@beckyy39, In the midst of the COVID-19 activity, I want to let you know that I am thinking about you and I continue to hope and pray that things are progressing forward for you. It sounds like you are getting a very thorough work-up, and I'm not surprised because that is what Mayo does.
Hooray! for your latest victory on the approval of your disability coverage.

Hugs and prayers as you continue on your journey.

beckyy39 | @beckyy39 | Mar 19, 2020

In reply to @amyintucson "@beckyy39 - I wonder why your testing at Mayo-Jax is taking so many more days than..." + (show)

I had a bunch of appointments the first couple of days but now I'm averaging about 2 or 3 per day.

beckyy39 | @beckyy39 | Mar 19, 2020

In reply to @rosemarya "@beckyy39, In the midst of the COVID-19 activity, I want to let you know that I..." + (show)

Thank you Rosemary! I was told by social security that it is now a normal policy to have a 6 month waiting period, so although I applied in January my first check won't come until July and I will never get the back pay from January. As I am a single mother of a 17 year old and have little other income, that wasn't good news. I'm cleaning out the last of my retirement account to survive but what does a person do who doesn't have those resources?

beckyy39 | @beckyy39 | Mar 19, 2020

In reply to @jeanne5009 "@Becky39 I think you are going to Mayo Jax I was there last week for an..." + (show)

Thus far, everything is going well although they have now stopped scheduling xrays, etc. due to the Corona virus so hopefully I can get the orders I got yesterday done when I get home.

Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2020

In reply to @beckyy39 "Thank you Rosemary! I was told by social security that it is now a normal policy..." + (show)

@becky39, I wish I could give you n answer. Did you talk to the social worker? He might have some ideas.

beckyy39 | @beckyy39 | Mar 19, 2020

In reply to @rosemarya "@becky39, I wish I could give you n answer. Did you talk to the social worker?..." + (show)

He suggested applying for cash assistance through the state at least until disability starts paying so I've done that and am waiting to hear back from that.