Jacksonville or Cleveland

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CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 2/15/2010 10:42 AM (GMT -7)   
 
Hi all !
 
I apologize that I have not been online for the past month or so. Frank is doing real well and we just kinda became caught up in enjoying life while we can.
 
We are looking at moving Frank to a state where the waiting list is shorter than New York's.
 
Many people have told us to get him to Florida, and I looked into the Mayo in Jacksonville. However, an online search showed me that Cleveland has a waiting time of just a few months. That doesn't sound right to me -- almost too good to be true.
 
Frank is a Blood Type O, so we have a long wait anyway.
 
Does anyone have any guidance or suggestions?
 
We'll be purchasing a condo in one of the two places and don't want to make a wrong decision.
 
Many thanks, and blessings to all,
 
Rob

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/15/2010 12:15 PM (GMT -7)   

Rob, very glad to hear that Frank is doing well.  Don't blame you at all for enjoying life while you are able to.  Do you know what his current MELD score is?

Since I go to Mayo Jacksonville, and they literally saved my life, I have to say I'm prejudiced.  The combined Mayos have the shortest wait time in the country for a liver.  At one time, it was 1 month.  However, now that Mayo Clinic here has their own hospital and word has gotten out, they also have a lot more patients.  Where in Cleveland were you thinking of going...the Cleveland Clinic?

My suggestion to you, if at all possible, would be to visit both places.  I know you can make an appt. online with Mayo.  Actually, you request the appt. in the dept. where you want to be seen (Hepatology/Transplant Center), and they will call you within 48 hours with a date--and it would be a soon appt.  I will tell you that they do not take HMOs, so you need to take that into consideration.  I had just signed up for a Medicare supplement when I first went to Mayo, and immediately dropped it so I could be seen there.  I still don't have one.  I would rather be billed for some of the cost and go where I know I will get excellent treatment.  I can also tell you that they do all the testing, etc., very quickly...within a couple of days, or a week at most.  You might be there for very long days, but everything will be accomplished quickly.  This accommodates out-of-state and foreign patients.  You can learn more by going to their Florida website.  There is a Marriott on-campus if you want to be close by.  Their hospital has all-private rooms with pull-out sofas so you could stay overnight with Frank if you wanted to.  I have to say that their entire staff, from the doormen to the doctors, are all very pleasant and professional.  It's a happy place (for a medical facility.)

They have many brochures, so if you would like more info I'm sure they would be happy to send it to you if you request it.

Since you expect to live where Frank gets transplanted, take into consideration that we don't have snow in Jacksonville (well, we had about an inch in '89, but none since.)  Our coldest months are Jan. and Feb., but nothing like Cleveland, I assure you.  Feel free to e-mail me if you have specific questions about Jax or Mayo.  Sorry I can't help you with Cleveland, since I've never been there.

Hugs,

Connie

ETA:  I just found this info.  At the end of 2009, they were still saying 1-month for liver transplant in Jacksonville:  http://www.mayoclinic.org/news2009-jax/5525.html

Also this: 

  • Gabriel House of Care: This 30-bedroom hospitality house will be built on Mayo Clinic's campus in Florida for transplant and radiation therapy patients. It is a collaborative project between Mayo Clinic and St. Andrew's Lighthouse, a Florida organization that provides housing to patients and their families. Groundbreaking for the project tentatively is set for March 2010.



  • hep93
    Forum moderator - Hepatitis
     
    "But that was yesterday, and I was a different person then."
    Lewis Carroll, Alice in Wonderland

    Post Edited (hep93) : 2/15/2010 12:35:41 PM (GMT-7)


    CGR
    Regular Member


    Date Joined Nov 2009
    Total Posts : 64
       Posted 2/15/2010 2:18 PM (GMT -7)   
    Thanks Connie, for all of that.

    Frank's most recent MELD was only 6 ... it went down from 14. So, I don't know if UNOS would take him. However, I know that these scores can change drastically overnight.

    Frank's preferance is Jax, and I (from a monetary standpoint) would agree since we can rent the condo out for vacationers when we're not using it and certainly resale would be better. and who wants to pay for heat in Cleveland?!

    I hate to be so money minded, but I have to be in order to afford this whole mess.

    hep93
    Elite Member


    Date Joined Jul 2005
    Total Posts : 12014
       Posted 2/15/2010 3:24 PM (GMT -7)   

    Frank, I asked about the MELD to determine if transplant would be imminent.  However, he would not be considered at this time.  It is good to have everything done in advance, though--get the evaluation done, tests, etc., so if things change quickly then that is all in place.

    Cost of living here is low.  I'm at Jax Beach, 10 min. from Mayo.  Since Jacksonville is the largest city land-wise in the USA, you need to consider proximity to Mayo.  You would want to be on the Southside or anywhere from Atlantic Beach down through Ponte Vedra Beach.  Traffic can be a bear, though they are widening many roadways to 3-4 lanes each way.

    Hugs,

    Connie


    hep93
    Forum moderator - Hepatitis
     
    "But that was yesterday, and I was a different person then."
    Lewis Carroll, Alice in Wonderland

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