Mayo Clinic Jacksonville | Evaluation Timeline

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maddyairspace
New Member


Date Joined May 2016
Total Posts : 3
   Posted 5/31/2016 11:06 AM (GMT -7)   
Hey Everybody!

This is my first time posting and I have a feeling it won't be my last.

My mom was diagnosed with Stage 4 Liver Disease caused by Hep C. She has been alcohol and tobacco free for many years, but the Hep C just kept going without treatment.

After the endless tests between specialists, we have been referred to Mayo in Jacksonville for a transplant.

I am the signed caregiver for my mom currently, and I have been hearing information here-say from her about the procedures.

The question I have is; how long does the evaluation last?

The coordinator told my Mom that it lasts 10 full business days, from 6am to 5pm with Saturday and Sundays off, I as the caregiver must be there the whole time and I would not be allowed to be on my phone or computer. (I am an executive at a corporation so I have a need to be available 24/7). Where-as their website says the evaluation period may last "several days". I was kind of taken aback by how long the coordinator said evaluation period is, I understand that when the operation takes place there is significant caregiving, but the evaluation period?

We have not received their "onboarding package" yet in the mail, so we are waiting for a complete syllabus, but is this true? What are other peoples experience with the evaluation?

Any help would be appreciated!

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 5/31/2016 9:19 PM (GMT -7)   
My medical evaluation took 2 full days.. I cant imagine why they wouldn't allow you to step out every few hours to check email and cell messages. Caregivers typically are not required to be present for each procedure they perform. It's a flip you inside out exam. They check you over for any possible problems that might complicate the transplant procedure.

Ziff
"The truth will set you free, but not before it pisses you off."

maddyairspace
New Member


Date Joined May 2016
Total Posts : 3
   Posted 5/31/2016 9:58 PM (GMT -7)   
Thanks for the reply A.Ziffle. I figured that medical evaluation is over-bloated at 10 days. I even called my own Gastro that has had patients at Mayo Jax and he said "what".

There is so much information pushed and passed that I feel, as a care-giver, it's my job to question and research each stage of what, I believe, will be a for-all-of-life experience.

If it really is 10 days, I will post here for other to be aware.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 6/3/2016 8:59 AM (GMT -7)   
m a s:

Welcome to the HW hepatitis forum. WE are sorry you have had to find us, but here we are.

We have had a few transplanted at Mayo in recent years, one lived nearby and one flew in from elsewhere.

We are Florida residents and went to UMiami/Jackson Transplant in Miami for Mike's evaluation. The evaluation was stretched out for us because Mike needed to do 6 months of alcohol cecessation before he could "get on a list." He want to AA 3 - 5 times a week, every week, except for when he was in the hospital. He was IN Patient about 1 week a month for this or that---kidney failure, very low sodium (hyponatremia), crazy HE (hepatic encephalopathy), pancreatitis, etc. They did like one or two things each time he was there:

Bloods---

many many vials, very often before and after TP

Cardiac Catherization and cardiac clearance

Nephrology clearance with tests, etc.

Oncology clearance, he had a small tumor in the liver (if tumor over 5 cm, you can't get a t!)

Liver Biopsy

CT scans

MRIs

Colonoscopy

Psychiatric clearance

--he saw a doctor locally several times. She wrote a letter that said he was psychologically ok for a TP (some find it traumatic) and he was unlikely to relapse on his sobriety (he is sober over 6 years now)

Nutrition counseling

Financial counseling

--Mayo won't take Medicaid and is particular about which insurance you have.. A rumor says they take limited HMO type plans. Be very careful about this. Miami took Medicaid thank goodness.

There is a SEARCH selection on the blue bar above. YOu can put in any key word and sit will take you to old posts on that topic. Ify ou want to follow Mike's journey, put in my screen name "Mama Lama" and go back to the period October 2010 to mid 2011 and I think I posted all the grim details over several worrisome months.

Good luck to you both,

Mama Lama


Once he "got on the list" and his 6 months were up he zipped to the top of the list as his MELD score was above their average transplanct points. He got tumor points which was the one good thing about the cancer diagnosis.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

maddyairspace
New Member


Date Joined May 2016
Total Posts : 3
   Posted 6/3/2016 10:08 AM (GMT -7)   
Hi MamaLama! Thank you for the reply, your posts is like a treasure trove of information and I appreciate the years and years of supportive posts!

I found today that the social workers at Mayo are incredibly responsive and knowledgeable which makes me feel much better. It turns out the evaluations are completely customized based on the patients medical history. My mom has florida health care and they approved the transplant with Mayo and Mayo accepted which we are grateful for.

I am happy to hear about Mike, I will certainly look back to your 2010/2011 experience as I am sure it will help guide me through alot of upcoming uncertainties.

Thank you!

spareparts
New Member


Date Joined Jun 2015
Total Posts : 3
   Posted 6/3/2016 1:18 PM (GMT -7)   
maddyairspace,

I was evaluated and transplanted at Mayo Jacksonville. My evaluation took 8 business days. You will know for sure when they send you the schedule. Once you know the time frame make your hotel reservations early as it can be problematic in getting a room at times. The Holiday Inn on Hodges is only about 5 minutes away and gives a "Mayo" discount.

There is absolutely no problem with you bringing your phone or computer. You will have plenty of opportunities to log on while waiting for appointments. Just make sure to mute or turn off your phone when you attend appointments with your mother.

I will be more than happy to answer any questions that you may have.
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