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Posted 11/17/2013 9:37 PM (GMT 0)
Hello all, my husband was diagnosed with alcoholic hepatitis early September. I hope you will be able to advise me!

He stopped drinking mid August. He hasn't eaten properly in at least a year, but his appetite has come back, thank God. Swelling in the belly but not the legs. He has been "drained" twice since then--less than 2quarts of fluid the first time, and 1 quart the second time. He got a bad rash from the water pills and was taken off them. He is on a new water pill and lost 8 lbs in a week.

He is actually pretty active--he walks every day and is raking leaves, cleaning out cabinets, etc. no napping, but is somewhat tired. He does not work.

He is seeing a local gastroenterologist, but I don't feel he is being treated properly. My biggest objection is that my husband is malnourished and needs nutritional therapy. This doctor told him to eat whatever he wants, but lay off processed foods and added salt. He is eating large amounts of red meat in order to put weight on. Also drinking something called muscle milk which doc okayed. And shouldn't he be taking supplements?

He did do a sonogram initially and has done blood tests. The last test revealed that his levels are"going in the right direction". My husband doesn't want me to go with him to his appointments. I think he is trying not to worry me. Too late for that. I've been worried for years!

Should we be looking into him seeing a hepatologist? We live on Long Island. If there is anyone out there who has had a good experience with a doctor on LI or NYC I would be extremely grateful for a rec.
His maddreys score was 42 at the time of dx. He is still jaundiced and has lost quite a bit of weight. Not sure if the score changed after the last test. I got the number off the copy of his medical records which I forced him to ask for. I know that 42 is very high and I'm trying to hold it together.

I thank God I found this forum as I have no one to talk to! My children are in their early 20's and they know, but dh insists that no one else knows.

If you stuck with me this far, thanks!
Posted 11/17/2013 10:49 PM (GMT 0)
Hi RoseL...Welcome to the forum. You've joined a group affected by liver disease...patients and loved ones. We're not docs, but we've been there!

There is some good information at the top of this forum that newbies find helpful...lots of websites.

Your hubby is pretty typical of our members with Alcoholic Liver Disease. If he does not have Hep C or other underlying medical problems, there is a good chance he can make a comeback if he stays sober. A program is recommended...AA or counseling to help stay on course.

If he were every to need transplantation, and it sounds like that would be a long way down stream, he might need to document his sobriety and attend meetings. My partner had to go to AA for 6 months before they would take him a transplant hospital. He had Alcoholic liver Disease, Hep C and liver cancer...so he was pretty sick. He was transplanted 2.5 years ago and is doing pretty well...not perfect.

He was transplanted in Miami but we got his care at Mt Sinai in New York before we moved south. We went there from Hartford...choosing NY over Mass General because we are both originally from NY. MGH is great also. Strangely, our Doc here transferred from Mt Sinai! We thought that was a good omen. We saw Dr. Bach in NY and have a friend who still sees her and is very happy. We were with a local Hepatologist in CT and went to NY just semi annually for check ups. It wasn't that close to transplant yet. But we liked that we had lined up the big guns for when it "was time." Then we moved.

Mike has been up and down about no one knowing he was sick. He would go from wanting to hide things to wanting everyone to know and putting things on Facebook.

So who knows....I think he was embarrassed.

To be a good partner to your husband, you DO need to go to the appointments. It was not long into this process that Mike started getting confused (they call it Hepatic Encephalopathy) and not remembering the directions and medications. I got involved at that point pretty fully. After a year post TP, Mike was able to take back the pill sorting, but for a while there he just couldn't manage.

We had to cut out his driving privileges for a while also.

I looked up about the maddreys score and see that anything over 32 is considered severe ALD. So that is not good. Most of us here work with the MELD score, more specific to liver disease. Here is the URL for that one:

http://www.mayoclinic.org/meld/mayomodel7.html

I'm sorry it has come to this....my partner continued to drink heavily though he was diagnosed in the 90s with Hep C, returned to drinking after a year of sobriety in 2003 when Dr. Bach told him if he stayed sober he would be okay for another 15 years. But the truth was, with drinking he had 5 more good years and then crashed....BAD. He was near death in 2010 and transplanted in May 2011. Sober since September 27, 2010...not that I'm counting!

I'm sorry your family is in this fix...you are not alone.

Best,
Mama Lama
Posted 11/17/2013 11:24 PM (GMT 0)
Hi Roselover,
Get to a hepatologist immediately, GIs don't have sufficient knowledge to treat your husband properly. Mt. Sinai has some outstanding heps. As for eating red meat...it's not a good idea. Red meat is the most difficult protein for a liver to process. Stick to chicken and fish. I loved eating a big steak, but once my liver began to fail (ESLD), was told to cut it out. I ate chicken, fish and even went vegetarian about 50% of the time. I got 4 years of time, by doing the right things. Had a transplant 4 years ago. My problem was Hep C, but if your husband's liver isn't totally gone, he could recover and might not need to deal with a transplant. Again, your husband needs a hepatologist, no red meat and no booze. It might not be a bad idea to document his sobriety in case he might need a transplant someday.
Posted 11/17/2013 11:47 PM (GMT 0)
Thank you both for your replies! I told him about the red meat...he will give it up. I was on the mt Sinai website and there is a dr listed who takes our insurance and is on the island. He is going to call in the morning. He promised.
Also, Columbia Presbyterian gastroenterology dept in NYC is listed in the insurance book. Does anyone know about them? Just in case we can't get a quick appointment with the mt Sinai dr.
Thanks again. I feel relieved somewhat. Being proactive to try to get the right care!
Posted 11/18/2013 1:34 AM (GMT 0)
Mama and David gave you good advice, RoseLover.

I would just like to add that you need to really watch the labels for sodium. You would be shocked at how much sodium is in a slice of bread, or a muffin, or anything canned! Ideally stay around 1 gram a day. This is hard to do unless you cook with fresh or frozen veggies and fruits. But you seem determined to make your guy healthy so I thought you should know this.

You will avoid a lot of serious discomfort and possibly grueling and risky taps on the lungs and abdomen ala paracentesis (draining of the abdomen) and/or thoracentesis (draining of the lung). Much of it results from sodium intake.

Best of luck to you and hubby, I feel he'll do really well with you at the helm :)

Hugs,
Posted 11/18/2013 1:41 AM (GMT 0)
p.s. When my brother had muscle wasting, and he couldn't improve, they sent him home from the hospital with a night-time feeding regimen. It was easy to do, the NG tube through the nose was probably the worst of it, though you can get used to it.

You eat normally through the day and before bed you set up the slow night feeding machine. Small unit attached to an IV pole, all of which his insurance paid for. Kept my brother from wasting away.

And YES by all means get to a hepatologist and keep ALL your records, especially test results and blood labs. This is be very helpful if he should ever need a TP. And if you can, definitely go to his doctor appointments. It's odd how many ESLD folks don't want a family member with them at the the doctor's office.

Take notes if you can.
Posted 11/18/2013 3:30 AM (GMT 0)
 Sounds like everyone is giving you great advice and you seem to be on the ball with all this. I drank protein milkshakes when I was having the same issues. My appetite was meager at best. The sodium issue can be a difficult thing to get through and for me it harder than quitting alcohol. I wasn't hungry to start with but what I considered bland salt less meals made it worse. I lived on protein shakes, bananas and peanut butter. Diuretics can be hard on the kidneys so just keep that in mind as far as dosages. A lot of guys who take diuretics experience testicular swelling also, be sure to watch for that. GI doctors can be very good for the in between visits but he really needs to see a Hepatologist.

Ziff    

Posted 11/18/2013 9:40 PM (GMT 0)
I am so grateful for all of your advice!
He got an appointment with a Mt Sinai hepatologist right after Thanksgiving. Yay!

He is well aware of the sodium and checks every label. We don't eat a lot of processed food anyway, so he is not really struggling with this.
I read on another posting that Ensure might be a viable option for him. What do you think?

He juices and eats lots of veggies and fruit--we recently switched to all organic. He does most of the cooking in our house--he wanted to know if dairy was safe.

I told him to watch for swelling--so far so good.
Reading your replies is both comforting and energizing. I truly appreciate it:)
Posted 11/18/2013 10:00 PM (GMT 0)
I used Ensure. It works and tastes good. My local hospital supplied it by the case and charged me much less than if I'd bought it at a store.
Posted 11/18/2013 11:12 PM (GMT 0)
Welcome to the forum, Rose.

I liked the taste of Glucerna (chocolate) better. Either that or Ensure or Boost will provide extra nutrition and can be used as a replacement lunch.

Hugs,
Connie
Posted 11/19/2013 12:05 AM (GMT 0)
My Mike used Ensure.. and he had a prescription for it from the dietician.. and it was covered by insurance at the time.

Sandia
Posted 11/19/2013 10:19 AM (GMT 0)
In answer to your question, dairy IS safe.

And lots of folks do the ensure milkshake thing and add a banana or something.
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