Kaiser Question

[lucylou690]

My brother had a stroke in 2008. He was tested for Hep C, but was released before the results came back. He got really sick in March. I went with him to his doc appointment (sister here) and due to his test results (high liver enzymes) I asked the doc if he'd been tested for Hep C. The doc said he'd tested negative for A,B, and C. Shortly thereafter he discovered the test done in 08. Since we've already lost two family members to this disease needless to say, I went off on the doc.

Fast forward to today. My bro has jumped through all the hoops. He has a low viral count, but has cirrhosis, his bilirubin is high (his color is yellow, though not 'bright' yellow), liver enzymes high, and the blood test for liver cancer is ten times normal. Doc says they don't go by this test anymore and I've read on the Internet that is true. (However at this point I don't trust Kaiser.)

We finally got a hold of the Kaiser treatment person who told us there is a 6-9 month waiting list for Hep C treatment.

I am scared to death. Does anyone have any suggestion as to what we should do? In addition, Member Services told us they would be responsible for any treatment (cost wise) that my bro needs done. However, we just received a letter denying the cost.

[lucylou690]

His platelet count is low, they didn't follow up on the 2008 ultrasound nodule because no one looked at the tests until I started screaming in March of this year. His AFP has doubled since March.

[lucylou690]

Thank you so much. My brother-in-law was transplanted at UCSF in 1998. For some reason, because this is my brother, I can't think straight so I thank you for putting me on the right track. Perhaps I didn't want to see it as end stage. But there's no use staying in denial anymore. I will keep let you know what happens.

[dontworry_behappy1]

Remember that Kaiser has a complaint line which is like an advocate for
your brother.  The good thing is that Kaiser has to give you a direct answer
in 24 hours concerning your brother situation after calling the complaint line.    Its worked for my family many times when answers where needed for a
very sick family member.   888-774-9100 Kaiser Complaints Hotline

[HectorSF]

I hope I can add to what has been mentioned by others.

It seems like Kaiser is saying your brother is not very ill. Yet you say he has the complications of End-Stage Liver Disease, the final stage of liver disease. From your description your brother is beyond the point of treating his hepatitis C so I don't know why they are taking about it? His liver is too damaged to handle 48 weeks of treatment. It could make his condition worse or cause his liver to fail. He has jaundice, probably has hepatic encephalopathy if his ammonia is high, ascites and edema (swelling legs and belly), loss of appetite, etc.

I have liver cancer so I can tell you a little about AFP. AFP is not diagnostic of HCC. It is used in COMBINATION with imaging to look for HCC. And AFP of under 100 is not definitive of cancer. If it were over 200 and raising over time I would be more worried. AFP is only 60% accurate for detecting HCC. It will give both false negative and false positives.

He needs a CT scan with contrast or MRI with contrast to diagnose HCC plus the doctors that can tell a benign tumor from HCC. For the most accurate results these tests should be done at a transplant center were they do these on a daily basis.
Has you brother had these scans?

As others have said your bother has End-Stage Liver Disease. He will need a liver transplant in the near future in order to continue living.

This is what I know about Kaiser...from other Kaiser patients that have ended up at UCSF. We see many patients at UCSF from Kaiser. Kaiser used to have there own transplant service but they were shut so ever since they have a contract with UCSF.

From what I have heard Kaiser has a committee that votes to approve the transfer of patients to UCSF when Kaiser can no longer handle a person liver disease. Your brother is in need of a transfer. Kaiser can not handle patients with End-Stage Liver Disease.

I don't know what the problem is with his doc but you need someone at Kaiser to advocate for your brother to can transferred to the UCSF transplant center ASAP. If his doctor is the road block, go around him. Get another gastro's opinion until you find someone who will present his case before the committee. Or go see the head of gastroenterology and tell him you want your brother sent to UCSF. If it were my brother I would go to Kaiser and demand that your brother be transferred. Unfortunately we have seen a number of patients come to UCSF when they are critically ill and close to death. Don't let this happen to your brother. The sooner he gets listed for transplant at UCSF the better.

Use every means possible to call attention to your brothers case and don't take no for an answer. You are going to have to get in some people's faces but this is your brother's life we are taking about. This is a life and death situation and let them know that.

FYI all transplant services at UCSF are covered by Kaiser so don't even worry about that. Kaiser insurance is the best insurance to have if your need a transplant. A friend of mine had a transplant with many complications and was hospitalized for 6 months. Her bill was $3 million. Kaiser paid it all.

Good luck!
Once you get him to UCSF I can help get him through the process. I have been going there since 2008 and plan on having a transplant there is 6-9 months.

Hector

[orphanedhawk]

I've been trying to find information online about his elevated AFP levels.
What I found is it can simply be because of his cirrhosis or they can be a sign of liver cancer.
http://www.ncbi.nlm.nih.gov/pubmed/18795704

http://hepatitis.researchtoday.net/archive/3/1/2421.htm

[orphanedhawk]

Having had decompensated cirrhosis, I'd say your brother is not on the brink, he has it full tilt.
I had a transplant and up until a few months before hand, although a bit fuzzy, I knew much about the world around me. Then I landed up delirious in the ER from encephalopathy. They put me on lacutlose, and I regained enough clarity to yes, tell you the date and the president.
I never turned bright yellow and viral load doesn't equal liver damage, as obviously seen by your brother's advanced illness. My legs didn't swell and I never had varicies. I mention this to point out that not everyone becomes incapacitated. I wasn't in the hospital until I went there for my surgery. At the time, I was living on only 9% of my liver and probably had weeks to live.

Telling you the encephalopathy is from his stroke while he has all the other signs of ESLD, end stage liver disease is ludicrous.
Your brother needs to be seen by a hepatologist experienced in liver transplants.
Although based in S.F. CPMC  has an outreach clinic in Sacramento.
http://www.cpmc.org/advanced/liver/
phone: [phone]

Or as Pooh suggested UCSF is excellent.

Don't delay.
All the signs point towards the need for a liver transplant.
I don't mean to scare you but he may have less time than you think.
Move forward towards getting him help.
You can sue the poop out of Kaiser, later.

Good luck~

[pooh55811]

As I am sure you are aware, your brother is very ill.

I am not the cirrhosis expert on on this forum.  However, if he gets fluid in his abdomen and legs, has an enlarged spleen, and is jaundiced, your brother sounds like he is teetering on the brink of liver decompensation.

How do they know the encephalopathy is from the stroke and not the liver? Has he had it since he had the stroke? Or did it develop in the last year or so.

Do you know what his platelet count is?

"A nodule was noted on ultrasound in 08."
Did the doc not follow up on this nodule in 2008?

"The area in which the nodule was noted could not be seen due to enlarged spleen. "
I believe there are more sensitive and specific scans that can be done to that would allow them to see the nodule area.

"In this ultrasound 2012 portal veins could not be seen, liver smaller than normal. How that can be I haven't figured out yet."  
When the liver fails, it can get smaller.  
"At first, the inflammation in the liver causes it to swell. As the disease progresses and the amount of scar tissue in the liver increases, the liver will actually shrink. "

http://www.emedicinehealth.com/cirrhosis/article_em.htm

http://www.emedicinehealth.com/cirrhosis/page3_em.htm

"The steps in making the diagnosis of cirrhosis may include the following:

    Blood tests - To check whether the liver is functioning normally. Lab findings can be normal in cirrhosis, however.
    Ultrasound, CT scan, or radioisotope scan - To look for signs of cirrhosis within or on the surface of the liver
    Laparoscope - A very tiny camera inserted through a small slit in the abdomen to view the liver directly
    Liver biopsy - Removing tissue from the liver and studying it under a microscope to identify fibrosis and scarring. Biopsy is the only way diagnosis can be 100% certain."

http://www.emedicinehealth.com/cirrhosis/page5_em.htm

http://www.emedicinehealth.com/cirrhosis/page8_em.htm

http://www.emedicinehealth.com/cirrhosis/page9_em.htm

Those links are all to the same article, just different pages of it.

If his request to see a Hepatologist was refused, they need to give you the reason in writing. I would push them on that. He needs to be seen and managed by a Hepatologist. and he should be seen by a Hepatologist at a transplant center.

You are a long way from San Francisco, but if I were you, I would call both the UniversityCalifornia Medical Facility in SF (UCSF)

http://www.ucsfhealth.org/conditions/organ_transplant/

and Pacific Medical Center (PMC) in SF and see if they can give you any help.  

http://www.cpmc.org/advanced/liver/


Another thing, they screwed up by not telling your brother he had Hep C in 2008 and by not following up with him on that Hep C. He probably would not be in this bad of shape if they had not dropped the ball.

I really do not know the best approach or strategy, but I would push them on seeing a Hepatologist at a transplant center, and somehow let them know that you know they screwed up and by them screwing up, your brother is now in very serious condition. He may have been treated and cured by now if they had not screwed up. I do not see how they can deny him treatment anyway, but especially since it was their mistake that has let him get so advanced in his liver disease. There has to be some process by which you can get him some help.

I am sorry I do not know more of the details and/or places to seek help. I am hoping others who do know will respond.

[dontworry_behappy1]

I know your pain.  He is lucky your there. You should have all the
information you need in his file.  Pooh is right about the information you
need from that file.

[lucylou690]

AFP is 50+. I just checked.

[lucylou690]

I do have his medical records and although he does have encephalopathy, my brother is 'there' most of the time. He is focused in time, knows everyone, can tell you who the president is etc. He just gets 'confused' and it comes and goes.

[lucylou690]

What Genotype is your brother?

1b

What is the name of the blood test they did, the one that was high and for cancer?

Alpha fetaprotein (sp)


Does you brother have fluid in his abdomen or legs.

Occasionally.

Does he get confused or is his mental status off?

Yes, they call it encepholopathy due to stroke. Not Hep C. Ammonia levels are slightly elevated.

Where do you live (which city and which Kaiser facility)? Kaiser Roseville and he's done the class.

Is his doctor a Hepatologist? If he is not a Hepatologist, your brother needs to get a Hepatologist to oversee and manage his care.

Doc is a gastroenterologist.

Does he have medical problems?

The stroke was in 08 when they ran the Hep C test that came back positive. He got ill this past March 2012. Extreme dehydration, vomiting, swelling legs and belly, high liver enzymes and was obviously yellow. I accompanied him to his doc appt which is when I confronted his doc about possible Hep C due to elevated liver enzymes,  That's when the doc discovered the positive test results for Hep C back in 08.  They took him off all meds and he has improved--somewhat.

Your brother, if he undergoes treatment and even if he does not undergo med treatment at this time, needs to be seen and managed by a Hepatologist at a transplant center.

That request was a direct refusal.

Viral load is 250,000, Alt is 119, the other one is 90. Alpha fetaprotein is 10x normal. Bilirubin count is raised, color is yellow, but not bright. His appetite is not good--fatigued most of the time. Encepalopathy comes and goes--again they say this is stroke not Hep C.

They had him on cholesterol meds for the last four years--doc says that did not contribute to liver going downhill. A nodule was noted on ultrasound in 08. In this ultrasound 2012 portal veins could not be seen, liver smaller than normal. How that can be I haven't figured out yet. The area in which the nodule was noted could not be seen due to enlarged spleen.  

[dontworry_behappy1]

Make sure you answer the denial letter.  Sometimes there is a time limit.
But don't let that stop you.  FYI ask to see your brothers medical records.
You can order them and review them with your brother.  Kaiser keeps records  forever.  Most of my family have had Kaiser and I have had very ill
family members.   You can have them copied for your record.
Best of Luck

[pooh55811]

Welcome to the forum. I am very sorry your brother is so ill.

I agree with Cheppie. Keep calling and go in person if necessary (probably will be). Kaiser should be able to move a person who has cirrhosis and is jaundice up the waiting list quite a bit.

There are a few pieces of information that it would be helpful to know so people can better respond:
*What Genotype is your brother?
*What is the name of the blood test they did, the one that was high and for cancer?
*Does you brother have fluid in his abdomen or legs.
*Does he get confused or is his mental status off?
*Where do you live (which city and which Kaiser facility)?
* Is his doctor a Hepatologist? If he is not a Hepatologist, your brother needs to get a Hepatologist to oversee and manage his care.
*Does he have medical problems? (I know he had a stroke in March.)
*Your brother, if he undergoes treatment and even if he does not undergo med treatment at this time, needs to be seen and managed by a Hepatologist at a transplant center.

Anything else you can add, like the lab/blood test results will help whomever is going to respond to your question. We have some very knowledgeable members on the forum, but they need to know as much about your brother as possible in order to give him the best advice.

[lucylou690]

Thank you for your response. I will start yelling, again. I cannot believe Kaiser has a waiting list. A doc friend said she could write the rx immediately. (she's not a Kaiser doc). I am so frustrated. I mean, to have him go undiagnosed for four years is outrageous. Couple that with all the liver damaging drugs they had him on.

*urgh*

[dontworry_behappy1]

Insurance loves sending denial letters.  Never except a denial of insurance
coverage for needed healthcare.  Go down to Kaisers Member Services and
don't take no for an answer.  You can also call a members complaint line
at Kaiser and get a answer in 24 hrs.  Kaiser loves to say no first.  Don't
except NO!!  FYI  talking loud work really well at Kaiser.  Also, because
of his condition.... ask where he is on the list.
Good Luck....  been there did that.