Cirrhosis Support Group

Hello;

I was talking to someone yesterday, a family friend, who's mother had a liver transplant years ago. She's telling me we should go straight to Mayo and start the process.

Can you do that?

She seemed to know something about the doctor and won't tell me.

A little back ground - Our area is not known for having great doctors. You find one that is badly known. Unfortunately my husband started out with one of the worse in the area and I'm leary already.

So she knows that we take what we can get around here.

When I said that this doctor had a great reputation she just reminded me that no one in our area can be that great. She said just get him to Mayo.

I figured I'd call tomorrow and see if that's an option. Has anyone ever heard of this?

Yes you can in most cases. If you check there web site there is usually a place to "self-refer". We are being treated by doctors. Doctors like to be in control, but it is US who are being treated. We are in control. The doctors at the clinic may review your case and decide it is not time to be seen by a specialist but NO ONE can prevent YOU from presenting them with the data.

I would assume some of this has to do with the insurance you have and if you can travel out of network? So many well meaning people have asked why my husband hasn't gone to the large teaching hosptial near by.....because they do not have an indigent department. By the time he is sober enough to qualify for a transplant, he should have medicare and medicaid.

Some centers don't allow self referral (Many do) If yours don't go to the ER at the center and usually they will refer you to see at least the Hepatologist there.

@Jackie - He has Medicare.

@Gail - I was wondering about that. Unfortunately, Mayo, wher we want him to go is over 3 hours away so I think they'd wander why he drove so far. But I'm still cosidering it.

Most of us travel for our main Hepatologist. Mine is a good couple of hours away. So I see a local GI for every day things and the hepatologist when needed.

I have heard you can do this too. When you get the call for the transplant, how many hours do they give you to get to the center? What is the window before the transplant liver goes bad? Does anyone know?

The amount of time will vary depending on the hospital. Many centers work with the patient to determine the exact time. A recovered liver can remain viable for upwards of 12 hours. I'm not sure when the candidate recipient is notified to get to the transplant center but 3 hours would not be out of line.

I was just asking because the Mayo clinic in our area is in Jacksonville about 3 hrs away. They also do them at Shands in Gainesville.

Our Hep doctor relationship is not the greatest here in Orlando. He has been shuffled around this will be his 3rd Hepatologist doctor with the liver team. The first doc left the practice, and the second doc was the head cheese who referred him to another one on the team. The third doc was the one who admitted him on his very first visit with him. --Then the hospital didn't do the procedure he was admitted for and sent him home. We don't have a whole lot of confidence in them. They don't seem very organized.

@SebringLady - Go for Mayo. When I was doing the research on clinics I remember something about Shands Transplant credentials being suspended. A family friends Mom had hers at Mayo and got excellent care.