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Frustrated about hubby's ALD

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Posted 5/20/2013 10:33 PM (GMT 0)
I am very concerned about my husband, but maybe I am over reacting..... nono nono scool scool one and a half years ago hubby got super sick after drinking and mixing drinks. We were on vacation, but he ended up in two emergency rooms, the last said he needed a gastrenologist so we flew home. He had been diagnosed alcoholic hep...acute. He had drank for forty years, but stopped drinking afterwards. His liver ultrasound showed no damage. He just recently had a relapse, his billirubin was 1.5. And his ALT 46 U/L. Red blood cells. 5.86/M/ul. Hemoglobin 17.5 g/do. Everything else in normal range...ultrasound fine. Dr. Says probably passed a gallstone. We want a specialist, she says no, it's Kaiser...a HMO, am I over reacting. Or after 1 1/2 years is it still likely to have recurring awful symptoms, all be it for four days this time, not three months.
Posted 5/20/2013 11:04 PM (GMT 0)
 Hello Jazzdame and welcome . I personally would get a second opinion and try get a referral to see a Hepatologist . This may be nothing but it's best to ere on the side of caution with liver disease . Once the liver is damaged to a point there is no turning back , Stabilization or transplant will be the only option to remain healthy . He needs to know for sure as do you what his current state is and what can be done . A Hepatologist is the key here . All hospitals that I'm aware of require a minimum of 6 months verified sobriety for one to be considered for the waiting list and then you wait on that list till the MELD score reaches the accepted limit . We are talking 6 months of clinging to life if his condition worsens with no chance of transplant .

Not trying to scare you but timing is everything and determines what the balance of his life will be , Don't let the insurance company bully you into waiting or cheaping out . His life is at stake here .

 Ziff    

Posted 5/20/2013 11:19 PM (GMT 0)
Doctor claims since ultra sounds are normal we can't have a specialist, that I am. Over reacting
Posted 5/20/2013 11:46 PM (GMT 0)
Somethings wrong here. They said he has alcoholic hepatitis, but he's fine. You can't have it both ways.
Posted 5/21/2013 12:15 AM (GMT 0)
An ultrasound is not going to show everything. He needs a liver biopsy. I've heard bad things about Kaiser. Everyone deserves a 2nd opinion and you need to fight for that. Vitally important is that he have no more "slips." If he is not going to AA, he needs to be. That will help ensure that he will stay sober, through a series of 12 Steps, listening to others who have gained long term sobriety, and taking the suggestions offered. I have 26+ yrs. of continuous sobriety, thanks to AA. Also, doctors will not take him or his case seriously until he has demonstrated desire and willingness to stay sober and is taking the steps to do so.

Hugs,
Connie
Posted 5/21/2013 12:40 AM (GMT 0)
Until a biopsey which btw I need to :). Make sure he is eating right...low, if no salt, no red meat, trans fat etc...loads of info online for liver friendly diets....
ReneeTina
Posted 5/21/2013 12:51 AM (GMT 0)
            hi jazz,   i live in so calif, and i have kaiser.  that sounds par for the course.  when i tested + for hep c, i was referred to gastroenterology. all my ultrasounds were normal. ultrasound gives you surface architecture and size and shape. it can also show inflamation and fat deposits. 

            in your case i would call member services(1-800-443-0815) and tell them your story. if your complaint is valid, and it will be, they will help you file a grievence.  that will get everyones attention, and you will get the referral.

          sorry you had to endure this garbage. drinking or not, his pcp should not be allowed to follow liver disease

                   best      barry

 

Posted 5/21/2013 1:55 AM (GMT 0)
Jazz: Listen to what they are saying...push back...you will have to be an advocate for him so get used to it. AND...if the liver gets bad, there is no cure but for transplant....he may not be there just yet, but he could be. If he has been a drinking man, he may relapse and if he does and needs a liver, they will make him wait 6 months of documented program. Don't let him get caught short.

NanaR: This is your first post. I will assume you have Hep or are the loved one of someone with Hep as you posted a good post. Do you want to start a new thread and tell us about yourself?

Welcome...both of you.

Best,
Mama Lama aka Carol from Florida

Post Edited By Moderator (hep93) : 5/21/2013 12:36:28 PM (GMT-6)

Posted 5/21/2013 2:41 AM (GMT 0)
Jazz all of the above... get him to a hep doctor and a liver biopsy to make sure.. great job finding us...
come back with more questions..

Sandia
Posted 5/21/2013 5:45 AM (GMT 0)
I have made a formal request for a specialist and a second opinion. My husband wants me to drop it...I guess he prefers taking his Dr. Word for it. The alc hep 1 1/2yrs ago was acute she said. I have no concern that he will drink again, he's smoking pot and is ok w/o the alcohol. He also has terribly bleeding hemorrhoids, dupry contracture , psoriasis, high blood pressure. I can't believe all the coincidences. I would give him part of my liver. Also he has periodic beligerence that is so unlike his normal self.
Posted 5/21/2013 6:43 PM (GMT 0)
Jazzdame, forgive me if I misspoke, but I thought you said he had a "slip." Also, if he should ever need transplant, he would have to be clear of marijuana, too. Believe me, they test for EVERYTHING. Meanwhile, please do press ahead with the request for a specialist/second opinion. He wants you to drop it as he doesn't really want to know what is going on and also doesn't want a lecture on what caused it. In other words, he's in denial. The belligerence could be from HE (hepatitic encephalopathy), or just fear about what is going on.

Renee/Tina, I hope you will take note of Carol's suggestion and start a new thread to introduce yourself to us and your situation. To do this, click on New Topic (instead of Reply), give it a title in the Subject linem and post away.

Hugs,
Connie
Posted 5/21/2013 8:44 PM (GMT 0)
In this case relapse could of meant that too, but I meant with sickness. I told him I am requesting a second opinion, that he can get angry I don't care....he didn't....hmmm. We have heard nothing on the request, tomorrow I will call number that ppm guy suggested earlier. I will let docs tell him about the. Pot, he's also done that for forty years. Thank you
Posted 5/21/2013 10:51 PM (GMT 0)
Jazzdame, thanks for the clarification. Forge on!

Hugs,
Connie
Posted 5/21/2013 11:43 PM (GMT 0)
WTG Jazz!!! Get er done!!! You are on track girl... WTG!!

Sandia
Posted 5/22/2013 2:46 AM (GMT 0)
Some transplant centers won't allow any drug use, even in states where medicinal use is legal.

*Sorry, David, but I had to edit your post, which was in violation of forum rules:

RULES:

1. No discussion of any illegal activity or threats of violence (ie. illicit drugs, including medical marijuana, threats of suicide, self-injury, or physical harm). Discussions of suicide and self-harm are not permitted.

Post Edited By Moderator (hep93) : 5/21/2013 11:37:23 PM (GMT-6)

Posted 5/25/2013 6:13 PM (GMT 0)
Well my husband is set up now with a gastroenterologist appt. Next week. Thank you everyone for the encouragement. confused I am still confused. After having a full out attack one and a half years ago...stopping alcohol completely, and then having a setback with this again for only four days, should this still happen when he's quit drinking? Although this time only billirubin and ALT were slightly elevated. The ultrasound showed mild coarsening and mild thickening of the gall bladder wall. How long till it reverses and he no longer becomes ill? I read constantly, under John Hopkins it says that ultra sounds are not always reliable in the instance of acute alcoholic hep. Not wanting to be a pain, can someone make me understand this? Hugs to all

Post Edited By Moderator (hep93) : 5/26/2013 12:17:55 PM (GMT-6)

Posted 5/25/2013 6:41 PM (GMT 0)
No problem, Connie. The message is still there after your edit.
Posted 5/25/2013 8:28 PM (GMT 0)
Jazzdame,

If I were you, don't wait for docs to get around to the marijuana issue. He should stop TODAY...it takes time to get out of your system and this very well could cause a delay in treatment for him and would DEFINITELY preclude him from being listed, should it come to that. Don't waste a day, it could mean the difference between life and death, literally.

Let me just say that when someone I know was so sick with ESLD from Hep C, he could have had a live donor if only this live donor would have quit the drinking AND the pot, but he didn't stop the pot and it prevented my brother from possibly receiving this liver long before all the damage was done to his body!

If he truly wants to live, stop today!
Posted 5/25/2013 8:55 PM (GMT 0)
Thanks...I did talk to him about it, he feels since he quit drinking he will heal without a transplant. And the fact he got sick again for four days is just part of his body healing. ( the REG dr. Said possibly he passed a gal stone). This is where I am confused, if he had a sickness relapse of four days does this mean it's not reversing? confused
Posted 5/26/2013 2:35 AM (GMT 0)
Jdame,
I'll assume that your husband isn't a licensed MD. Therefore his "diagnosis" of healing without a transplant holds no water. He needs to see his GI next week, though a hepatologist would be better at some point.
Posted 5/26/2013 2:42 AM (GMT 0)
it's called denial... and its hard to come to grips with this disease ... Sandia
Posted 5/26/2013 3:29 AM (GMT 0)
Thank you....
Posted 5/26/2013 1:55 PM (GMT 0)
Jazzdame,

There were many times the HE confused my hubby .... and he would say, "I think the Dr's are wrong...I'm not even sick!" (Even when he was in the nursing home because of the ESLD). Denial!!

It is hard for men (prob women, too) to admit they have a disease that will kill them..especially men who have lived a risk filled life and have survived a lot of circumstances that should have done away with them a long time ago.
Angie1953
Posted 5/26/2013 2:48 PM (GMT 0)
Good Morning JD

ALD is tricky.

Healing after the alcoholic becomes sober -- forever -- is individual

We have members who have died sober because their livers were too damaged to heal

We have bees who caught their disease in time,  who slowly have returned to something similar to a normal life.  Some have returned to work, others have not.

This is why hubby needs to see a hep or GI doc. Then he (you both) will know better his next steps.

ALD causes liver fibrosis. Those sections cannot regenerate healthy cells. Normal liver tissue can regenerate. So which is it for your hubby?  50% fibrosis, 20%, 99%?  Only the testing will show the story.

Those with advanced fibrosis have no chance bar transplant!

One wonders whether he has actually finally and forever, decided to quit drinking.

My Mike quit when he had a Hep C treatment in 2003. He stayed sober a year. But when he started feeling better he would ask his doc, can I have a glass of champagne at my daughter's wedding?  And he pushed for an answer. What he heard was ....sure a glass won't kill you. But those with ALD don't EVER have a glass. Within a year he was drinking daily.  And too much, of course.

He got 5 years reprieve...and then almost died. He is sober 2.5 years now and I feel he is a sober alcoholic now. 

When he had his liver biopsy in 2003 they said he could go 15 more years with the status of his liver then, IF he didn't start drinking again. So 15 with no drinking, 5 years WITH drinking. And then he faced death head on.

Now post transplant, he isn't his old self. He is alive and doing some stuff. Not much for a 63 year old man.

Hugs,

Mama Lama

Posted 5/26/2013 4:45 PM (GMT 0)
By the ultrasound they are saying there is only some mild coarsening, the dr. Isn't even talking cirrhosis, that's me. I am concerned that regardless of the ultra sound that he already has it because of his symptoms, the dr. Told me, he quit drinking that's all he can do regardless. He sees a GI this week, I requested a hep, this was the DR. Preference. Dr. Said she ran original testing by a heptologist 1 1/2 hrs ago, that's how they got the diagnosis AAH. The Dr. And my husband feel I am pushing something that does not need to be pushed. I am confused because of this, can he hav AAH a year and a half ago, get similar sick again and it be nothing because ultrasound shows only minor coarsening and minor gallbladder wall thickening?
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