Liver Failure and Kidney Failure

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friends_forever78
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/10/2009 1:27 PM (GMT -7)   
First off, I would like to say that I have never posted anything in a forum type setting, but came across this wonderful site while trying to find out some information/help for my best friend.

My best friend of 30 years, as we have known each other since birth was diagnosed with cirrhosis of the liver about a year ago (from alcohol), she is now alcohol free.

Her family had her decided not to tell me until just recently because my husband is in the Army and we currently live in Europe and they knew that the expense of traveling back and forth from the US would be a lot.

She was admitted into the hospital for the second time in less then a year in the middle of March, and the doctors told them that it was a miracle she left the hospital the first time, and to start making plans for her to pass. That's when I got the call and I immediately boarded the next flight to the states. I spent two weeks by her side day and night, just being in her presence. Hoping that my energy would help her get better. The day after I left she was released from the hospital and sent home. Another miracle had happened.

Her mother has been taking care of her day/night since then and all things seem to be stabilizing and maybe even a little better. A couple of weeks ago she had blood and urine tests done and the doctor's told us that everything looked great. No infection were detected. Yesterday she went back in for a doctors appointment and the doctors admitted her back to the hospital because her blood pressure was to low and they feared that she might go into cardiac arrest. While there the ran some more tests and said that on a scale from 1-5 (1 being the best) here liver is a 5, and her kidneys are in failure as well. They told her mother that she could have 2 weeks to 2 months to live.

We want to get her a second opinion but every doctor that her mother has called said that they need a referral, but she doesn't trust the doctors as Kaiser Permanente, and wants to pay out of pocket for the second opinion. But no doctor in the Portland, Oregon area is willing to help. Is this normal?

I am needing some advice/guidance to assist my best friends mother in gaining the second opinion she is entitled to and that we desperately need.

If you can help with a doctor's name or a organization that will help us gain all the information that we seek please let me know.

Thank you in advance for all the help you can give us. confused

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2009 4:48 PM (GMT -7)   

First of all, I'm so sorry that your friend is suffering so from liver disease.  Has a transplant been mentioned or is she too ill?  How long has she been free from alcohol? 

I'm in FL and don't know of any doctors in that region.  However, I do know that sometimes doctors are  unwilling to intervene when a patient is already under the care and treatment of another physician.  While she is still hospitalized, her parents could see if they could get an in-hospital "consult" from a different hepatologist. Because of the insurance issue, they may be afraid that they won't get paid.  I think the parents need to be very forthright and tell a consulting physician that they will pay for a visit by cash or credit card, prior to the visit if necessary.  The regular doctor really shouldn't have a problem with them seeking a second opinion.  I'm sure he would if it were his daughter.

I was being seen at Shands for Hep C when I was diagnosed with liver cancer.  All they said was "so sorry."  They gave me no hope.  So I made my own appt. with Mayo, which happens to have a clinic and hospital where I live.  Thank God, as they saved my life.  I did have to drop my HMO and use just regular Medicare, as they don't accept HMOs...but that was fine by me.

You are being a good friend and I know you will do your best to garner info for her parents.


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/10/2009 10:13 PM (GMT -7)   
Hello friend, and welcome to HealingWell.

I too am sorry about your friend. If I am understanding you correctly.....you're saying her family wants to pay for the second opinion? They can demand that she receive a second opinion outside of Kaiser and I believe Kaiser has to refer her and pay for it as well. They are not going to tell her that and she and her family has to be firm with them. They are going to do everything to try and not refer but have them threaten them with a law suit if necessary. In the very least, they have to give her a referral.

One of the Kaiser hospitals in CA that did transplants .........lost accreditation for transplants a few years ago. I can not quite remember why they lost it but it wasn't for a good reason. I do understand why her mom doesn't trust Kaiser.

With Portland being a big city it is sure to have some good Hepatologists. Google "Hepatologists in Portland Oregon. Have her mom pick her own and make Kaiser refer her to him/her.

Take care...........thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


friends_forever78
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/11/2009 10:04 PM (GMT -7)   
Thank you all for the kind words and helpful advice. I will forward what I have learned so far to my friends mother, and hopefully we can get her in to see someone else.
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