my mom has ESLD, looking for help and support and a roadmap!

Hello, Child4, and welcome to the forum.  I'm sorry that your mom has liver disease, but I am sure you will find a lot of information and support here.  Be sure to read the educational threads in the Hepatitis Resources folder at the top of the page.  Also some of the older posts.

Where is your mom listed for transplant?  What center?  It's good that she has gotten offers already, so she shouldn't have to wait too long.  I assume she's already been through all the evaluations, etc.  If you've done any reading here, you know to keep salt to an absolute minimum.  Her getting up and about will definitely help manage both her circulation and the accumulation of fluid.  However, if she is standing for too long, her feet and ankles could swell.  It's always a balancing act.  She should abstain from eating beef as it's the most difficult protein for a damaged liver to process.  Fresh fruits and vegetables should be plentiful in her diet.  It sounds as though she had fatty liver which progressed to NASH (nonalcoholic steatohepatitis) and decompensated cirrhosis.  In Dr. Palmer's Hepatitis & Liver Disease, she states that "Since people often gain weight after transplantation, all transplant recipients, but particularly those prone to NASH, must be especially diligent about maintaining a normal weight after liver transplantation."

If there's anything you'd like to know, feel free to ask.  Someone can probably answer or point you in the right direction.  Also, feel free to just vent.  You have plenty of company here--more caregivers than patients.

Hugs,

Connie

As I stated above, fatty liver can turn to NASH and decompensated cirrhosis, which sounds exactly like what happened to your mom.  I've heard that UPMC has a short wait time for a liver, so that's in your mom's favor. 

Many here can empathize with you about the Lactulose balancing act.  If she's taking it without much of a fuss, that's half the battle.  Fortunately, though I have hep C and cirrhosis, I've never had hepatic encephalopathy.

Hello Child4 and welcome to HealingWell. I am so sorry that your mom has liver disease. But I am glad you found us. You find our members to be very compassionate and knowledgeable.

As far as a live liver transplant ..........I am not aware of any of our members or their loved ones having one. I know that there were some looking into it but whether or not they were able to have it done I am not sure. A lot of the transplants centers won't do it because of the risks to the donor.

As far as the lactulose........some doctors want the patient to have not more than 2-3 bowel movements a day. If it's more than that it causes a host of other problems for most patients. You have to find the right dosage for your mom......easier said than done I know.

As Connie has said it is a tough balancing act not only with the lactulose but with most of the meds, supplements, exercise and diet.

Again welcome to HealingWell.........take care.....thoughts and prayers..........

I am sorry about this turn of events.  Sometimes with end-stage liver disease, there is kidney failure as well.  You should ask the doctor, but I really don't think that dialysis would have anything to do with the Lactulose.  The purpose of the Lactulose is to bring down the ammonia levels (that cause encephalopathy) through bowel movements.  So the kidneys really aren't involved.  As far as I know, she would have to continue taking the Lactulose, but do check with her doctor.

Yes, it could increase it.  When there are additional problems that are a result of the liver disease, it should boost the MELD score.  Available livers go to the very sickest, so it's a positive in that sense.  Once she has a transplant, her kidney problems should resolve...unless it gets to the point where she also needs a kidney transplant.

how do you tell the difference between the extreme fatigue and the start of an encephalopathy episode? Mom was responsive to me this morning, talking, but falling asleep mid sentence. Did not seem confused, proper answers and all, no blank stare, but I don't want to miss the start of an episode when we could give her the lacktalose - which I could not get her to take, but the nurse will.

I saw a clear difference, buthte visiting nurse insisited it was the confusion caused by the ammonia.  She made me send mom to the ER, no big deal, she had a paracentitis scheduled for tomorrow anyway, but I worry about infections.  Still waiting for the ammonia reading.  I have a hunch it will be normal.

Somthing new to learn.

Back in the hospital - went for a routine - if  you can call it that- paracentisis.  Mom was in transitional/rehab hsopital after a week in the hospital for high ammonia - she just became completely lethargic after being there for about 3 hours, and I did give her the lactalose.  They admitted her, we are back on the ammonia roller coaster.  Her hemoglobin was low, so they gave her vitamin K - this was new to us.  They cannot find any bleeding - which is great.  But what do these more frequesnt bouts of enseph mean, if anything?  I cannot get an answer from the doctors.  We need a liver!!!

Hi everyone!

My sweet daughter just bought a new computer for me so I am back on line after over a year.  I was just looking around and found this amazing site.  I've been glued to it for about 2 hours now and thought that this would be a great place to be.

I was diagnosed with ESLD in Jan of this year.  The only cause we can come up with is a contaminated transfusion in 1976 when they didn't test for that.  I didn't know anything about having the virus until 1993 when I was actually accidentally tested for it.  All I knew about it was that the nurse on ER had it and everyone on the show acted like it was a really bad thing (sounds like the same ignorant conditions as my first pregnancy!! - except for being good, of course).  They put me on the Interferon and I didn't tolerate it well at all.  Finally, my doctor said something about my DNA predicting that it probably wouldn't work for me anyway and stopped the treatment.  Once I stopped the Interferon I felt fine and went on to complete a Ph.D. in cognitive systems and behavioral neuroscience from Arizona State University in 1995; the same year my first grandchild was born.  Everything was going so great and I was frequently promoted.  Then, about two years ago I started to actually lose jobs.  I would become confused, slur my words, forget what I was talking about, etc.  I'm sure everyone thought I was abusing drugs!  Sometimes I was better, but we never knew.  I decided to quit working for awhile which is probably a good thing since no one would hire me, Ha!! 

I have 5 grandchildren now and have been able to spend more time with them then before.  However, I really, really regret the times that I have frightened them because I'm not being the "other, O.K." grandma.  I'm on Enusol which I guess is the same as lactulose, but my ammonia levels still ride a roller coaster.  Last week was 147. I'm on the list for a transplant.

What I hope to get from this site is to provide hope, support and prayers for those of us who feel just a bit cheated.  I hope by doing this that it will keep me off the pity pot.  I don't want to give up, but to fight and give this thing a run for it's money.  That why I am...

                                       2 young 2 die!

 

Good Day' everyone since I don't know the difference sometimes don't remember yesterday. Lactulose ??? have cryptogenic ESLD and have been on the lactulose roller coaster for almost 3 years. The only thing thay can compare it to is NASH . I have never been drained. Thank God for that. I've gone (from 7 to 8 tablespoons bnow 2 now zink sulfate and xifaxan. MY memmory and and incosistant ammonia do not coinside . I'm a horse of a different color. Have gone on a scale of less than 14 to 165. When I feel a little off I use more lactulose. Which I'm not quite sure on. For about 5 years after my gallbladder surgery I always had the runs. Then my brother had surgery. Same problem , but his doctor pres. questran. So I followed and was normal for several years. Now I have to take lactulos. I just don't know what is going on. They tell me to be this far along in this desiese I had to have had it chronically for at least 25 years. Never diagnosed even though I was in Dr. care since my BP was always high. Which was GB removed around that time. Anyway your welcome to read my old posts. I've been on this site for quite some time. Also had a brother who just a few weeks ago passed on from kidney failure. Which he had for a very long time. And a good friend of mine Well her husband is on a kidney transplant list, currently on home dialisis'.


Take Care of Yourselves as well. Only time will tell. Take time out to smell the roses?? ior is it coffee.???

june

2young2die, welcome to the forum!  I would like to suggest that you start a new topic (just click on New Topic instead of Reply) to introduce everyone to your problem.  That way you have a better chance of people seeing your posts and responding.  I always feel particularly bad for those who contracted hep C from transfusions.  (Mine was from drug use/shared needles.)

June, I'm not sure if you told us previously about your brother.  My memory is shot these days.  But I would like to send condolences to you for your loss.

Hugs,

Connie