Tim and Leslie, I hope you will post here about
I had first gone to Mayo in '06, after being diagnosed at Shands with a huge liver tumor that took up the entire right lobe and had metastasized to a vessel that runs off the liver. Shands gave me no hope and I never even got an appt. with an oncologist. So I went to Mayo. I had just gotten Medicare, so it worked out fine. I also have Medicaid Medically Needy, which I use as a secondary insurance.
I am now 12 min. from Mayo, as I live at Jacksonville Beach. I lived in Jacksonville previously for many years, but am even closer to Mayo now. I had them revise my hip replacements and the ortho did a great job. I've also had hernia repairs and other work done there. They ended up removing my rt. liver lobe due to the first cancer, and I was "okay" (though still with hep C) for 4 yrs. That's when I had some of the work done. In 2010, an MRI showed that there was a tumor on the remaining left lobe, necessitating a TP. My MELD had never even been discussed before, but after evaluation I was at a 15, I think. The tumor automatically jumped it to 22. After 3 mos. on the list, I got another 3 points. The same day, I received my TP at a 25. So a 3-mo. wait. It would have been 2 1/2, but the first call they refused me when I got down there because of a respiratory infection. I was inactivated and on antibiotics for 10 days, and then reactivated on the list after a chest x-ray showed my lungs were clear.
I've heard that Tampa General and Orlando General (I think) are also good transplant centers.
Mayo has beautiful grounds and very upscale interior, especially in the hospital and hospital clinics (where the TP clinic is.) They are currently adding 2 stories to the hospital. On the transplant floor, each room is private. I've only been in private rooms there, for anything, so maybe that's all they have. There is a pullout sofa for guests who want to stay overnight with the patient. There is a newly
opened (a year or so ago) residence facility called Gabriel House on the grounds. It is not free, but cost is lower than other accommodations on the grounds, such as The Inn at Mayo and The Marriott. There are other motels and studio apts. in the area, too.
The biggest problem at Mayo is insurance. They have a list on the Internet of what they take. Or you can call them. I'm sure they have a toll free number, but I only have the local one.
Best of luck, whatever you decide!
Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Post Edited (hep93) : 5/26/2013 12:16:11 PM (GMT-6)