Dad in MA waiting for Liver. Lots of questions? Need advice.

Got my liver on 3rd call. Don't know why first was rejected. I was in ICU due to splenic artery aneurism
, and my husband accepted an extended criteria liver. 2nd offer, the liver had plaque in vessels so it was rejected. Third liver accepted, but I was exposed to CMV by it. First offer Feb. 2013. 2nd offer In July and tx in August.

SCARED AND SAD ,
IM SO SORRY THIS IS THE HARDEST THING IVE HAD TO GO THROUGH SO I TOTALLY UNDERSTAND ,
I HOPE FOR THE BEST FOR YOU & YOUR DAD,

Amanda, Themister and I are pulling for you and will be thinking about you and your Dad this week. Stay encouraged as you move forward. You have come a long way and done all of the footwork to make this transfer for your Dad. Very proud of you. Your tenacity to give your Dad this opportunity has amazed me. Biggest Hugs,

So I don't know if this should be a new thread or still off if this one ( still gave trouble getting around in here)
So sitting here waiting to give dad last dose of lactalose for the night but my mind is running with florida mayo thoughts so basically I was wondering if anyone had some advice / suggestions from going there from here ~ logging~ getting around~ how long it took to go through evaluation ~ how long til transplanted ~ what meld score when transplanted~
I guess anything helpful ....
Sleepless mind ....

Thank you !!!

Thank you so much worried daughter 2 !!!!

Good Morning Keepin,
Have you set your Dad up with Mayo online patient account information? My husband is listed at Mayo AZ. They have an app you can use to see appointments, labs, and doctors notes as they are posted. We had labs withing about 2 hours on my smart phone. (or home device). Sometimes he will finish early with one test and you can try to move his appointments earlier.

Since your Dad has done an eval at Mass Gen, they may not need everything...but again, it is up to them. I am sure they have his records.

My husband did not need to repeat an EGD, colonoscopy as he had those recently. He did not see an infectious disease doctor. My husbands evaluation was 4 days, all was done out patient. Not sure how it works with your Dad's HCC history, but that might take some extra appointments.

Call Mayo for hospital discount hotels close by. Mayo in Arizona has a hotel sitting right by the parking lot, but I have not needed it yet. Pre-transplant scheduling can usually direct me to the people that can help me, whenever I need something.

Again, out center is Mayo, but the one in Arizona...but they might operate pretty similar. Hope this helps some. Big Hugs

KIF, so we have some good info from Mayo JAX and Mayo AZ this morning.

I will add some general stuff about evaluation and transplant prep.

Mike's TP was at U Miami in Florida. He did the evaluation over time, an appointment or two a week over some months. It was long and dragged out. But, we learned to idle hours and hours away in hospital waiting rooms. Patience is required! Everything seem to take a long time and the apts you go to can be far away from each other or even in another building. Ask for a wheelchair even if he is not mobility impaired as he may get very very tired during long transfers and waiting hours.

Plan to stay. They may send you home to MA to wait for a while again, but be prepared to stay in FL. Bring what you need...PC, meds for caregiver and patient, enough clothing for a hot summer location, sweaters because it is endlessly cold in some of those hospital areas, extra chargers for your phone and laptop if appropriate (and keep them charged for unexpected middle of the night vigils just in case), comfortable clothes for after TP (elastic waists, no zips, easy t shirts), all all all documentation you have so far including disc if you have MRI or cath or Xray reports).

We lost our Moderator Connie last year when she deveoped plural effusion. She was translanted at Mayo and always told us about her appointments. They started really really early! Prepare youself for them to say 6:30AM to be there! She was trannsplanted at 22 I think, or maybe 24. That is the big draw of Mayo....very successful program with low Meld score history.

Mae told you about the on campus housing...and close hotel. It is in the Jacksonville Beach Area, south and east of the airport...it is quite a ways. You may want to rent a car. It is a semi urban, suburban area so there is likey a close grocery store and WalMart is you forgot something.

Good luck, this is really really a BIG DEAL.

Hugs,
Mama Lama

I've 3 hrs sleep in the last 48 hrs I'm exhausted & now emotional thankfully not I. Front of him ( I never do that ) I think back to how strong he was how invincible .... Always on the go
I long for the days to see that smoke again watch him go fishing enjoying his boat having cook outs telling stories around fire pit......
I pray so hard for this it is a constant thought never goes away consumes my days & nights life is on hold hoping for the best .....

Amanda,

MamaLama reminded me about the wheelchair issue. There are three main buildings at Mayo:

Mayo - the main one where the coordinator and many appointments are

Cannaday - where all his labs will be drawn

Davis - where peripheral appointments will be

At each entrance there will be attendants and/or volunteers with wheelchairs. They will take Dad to wherever your appointment is. So if your dad is in the wheelchair, let them do the work for you, give yourself a break. If you valet park at one of them, your 5.00 (unless it went up) is good for the day...you just tell them you are not done yet and they stamp it or something. But if you don't have a car, all 3 buildings are connected so if you have one appt in Davis, these folks will wheel him to your next appt even if in a different bldg. (they do a relay).

When you are done with your appointment, the desk will call for an attendant to come get him and on to the next. It's quite a nice system and it will save your back and legs from pushing Dad around all day:)

When brother got his transplant I got sick and couldn't walk those long halls to get to his room so this service was extremely helpful. They don't care if you're a patient or a visitor, they are happy to oblige.

Another thing I forgot to tell you on the phone, bring an extension cord...mine came in handy many times at the condo and later at Gabriel House.

As I said on the phone, if you take the auto-train, I have another whole list of suggestions. I've taken it a dozen times or more as I just love shaving 850 driving miles off my trip and being rested in the a.m. when you detrain.

ALWAYS put a mask on your dad when entering, they're available at every entrance. Can't be too careful when they are fragile like that. Don't forget to get a new schedule each day at any of the reception desks during evaluation or you may miss a "change". They don't always call you when they add or change an appt.

Maybe you should print some of this as I know your Mom is taking the first week to go to Mayo.

I'm so glad you got Kim Malloy as your coordinator, she is awesome!

Hang in there, he is young, doctors are human/compassionate, and I suspect they will do right by your Dad, you'll see. He will be a new man in no time!

Hugs,
Mae