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

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child4
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Date Joined Jun 2009
Total Posts : 107
   Posted 6/1/2009 12:51 PM (GMT -7)   
Found the forum looking for information on lactalose - thank goodness there are others out there plowing through this mess.  We were told on July 31 that mom needed a liver transplant - non-alcoholic cirrosis - started with a fatty liver - but we were never given advise to make changes in the diet or anything like that.  mom is 74, never ever been sick - in the hospital only to have her kids.  MELD score went from 13 to 21 in these few short months.  Called 3 times for a tranplant IN ONE WEEK, the livers were no good - have not has a call for 3 weeks.  First bout of high ammonia - moved mom to a senior living center with help, but not assisted living...yet...because she wants to stay as independant as possible.  It seems to be helping in that we have made it for a week before needed a drain for acities, we were going every 4 days...the new place seems to get her up and moving around.  There is alot to manage....

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/1/2009 1:11 PM (GMT -7)   

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



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

Post Edited (hep93) : 6/1/2009 2:24:17 PM (GMT-6)


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/1/2009 1:18 PM (GMT -7)   
Just getting a reply has lightened my heart. We are in Pittsburgh, so we are listed at UPMC. We are through the evaluation and just had the first real bought with the confusion - thus the balancing act with the lactalose and dehydration. Mom never uses salt, not even to cook, so we just have to worry about what is cooked for her, and the diet here is low sodium already. It's such a roller coaster! They cannot tell us what caused the disease, just that she had a fatty liver - so the siblings are a bit concerned with that - I have had my enzimes tested, but I need to find time to get some excersice and get myself back to a good weight, since that is the only real thing the doctors are pointing to with mom - although she is not obese by a long shot. Long nights waiting for the news on the three liver calls...

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/1/2009 2:35 PM (GMT -7)   

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.


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


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/1/2009 7:47 PM (GMT -7)   
has anyone been through a live liver transplant?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/1/2009 8:19 PM (GMT -7)   
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..........
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.


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/3/2009 11:16 AM (GMT -7)   
Okay, Dr. called today, kidney fuction is diminishing. Can anyone clue in in on the whole dyalisis thing AND will that mean she would not have to take the lacktulose?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/3/2009 2:10 PM (GMT -7)   
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.

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


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/3/2009 6:09 PM (GMT -7)   
Will this change her MELD score?  It is crazy to think that the sicker she gets, the better chance of a liver!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/3/2009 6:26 PM (GMT -7)   
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.

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


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/3/2009 7:03 PM (GMT -7)   
That's what the doctor has said.  Oddly enough, when she was in the hospital with the confusion because of the ammonia, her levels were at their best....great, she was just totally confused but everything was fuctioning well!!  Just venting.  She feels so good this week, I hate to rain on the parade.  I am hoping her levels are okay on Friday that we do no thave to talk about dialysis, but it is feeling inevitable.  Can anyone shed some insight on that process??

child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/4/2009 7:23 AM (GMT -7)   
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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/4/2009 12:40 PM (GMT -7)   

Child4, I suggest you take each issue as they arise.  No use in worrying about dialysis when her kidneys haven't yet failed.  The doctor will explain it to you if it becomes necessary.  Basically, hemodyalisis is done at a free-standing clinic or at a hospital.  It cleans the blood, which is necessary when the kidneys are no longer able to filter out toxins.  It may be done through a subclavian catheter temporarily, but if it becomes a lifetime thing, they will create an access in the arm.  It is normally done 2-4 x a week.

Fatigue is fatigue (very tired, sleepy, etc.) and encephalopathy is confusion, inappropriate behavior such as being very irritable, etc., and being "out of it."  There's a clear difference.

Hope this helps a little.



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

Post Edited (hep93) : 6/10/2009 11:11:08 AM (GMT-6)


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/4/2009 1:27 PM (GMT -7)   
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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/4/2009 7:48 PM (GMT -7)   
The fatigue and sleepiness can also be due to kidney dysfunction.

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


child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/5/2009 6:28 AM (GMT -7)   
Somthing new to learn.

child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/10/2009 8:44 AM (GMT -7)   
I will most certainly go back and read your posts!  There is always alot of information in the posts and they are very helpful.
 
I am glad you are feeling better.  We are hopeful for mom - we had our 4th liver call but again, it was not a good organ.  This time int eh hsopital, however, the attending doctor asked if mom was ever on steriods for the autoimmune hep, she nver was.  When I asked the liver specialist, he said that mom already had cirrisis and the steriods would do no good.  Can anyone enlighten me on that?
 
Thanks!  I wish I would have found this site sooner!
 

child4
Regular Member


Date Joined Jun 2009
Total Posts : 107
   Posted 6/17/2009 1:29 PM (GMT -7)   
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!!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/17/2009 1:51 PM (GMT -7)   

You are right.  Your mom does need a liver.  What you are describing goes right along with severe liver disease.  I pray that she will be offered a good liver soon!

Hugs,

Connie


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


2young2die
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/17/2009 10:53 PM (GMT -7)   
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!
 

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/18/2009 12:46 AM (GMT -7)   
confused  Good Day everyone idea 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  mad Lactulos.  mad   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?? smhair r is it coffee.???
                                 (care givers)
                                                                                             confused   june confused

Post Edited (june17) : 6/18/2009 2:22:32 AM (GMT-6)


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/18/2009 12:46 AM (GMT -7)   
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

gateway40
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/18/2009 9:30 AM (GMT -7)   
toyoungtodie ,you could have written my post per batim! Exchange a BA for your PHD. and no grand kids  and that post is me. Waiting on call as I type,  for  transplant listing. Meld score is low 13-14 but feel like its in the twenties. Drs. feel I am one  in a feel worse than meld score reflects situation. .  Long to feel better like everyone else. Have some decent days (seem to be getting fewer). Fatigue factor and ascites is the hardest for me. lost 20 lbs in two months (the less i eat the less i am fatigued). Have been drained once. diuretics seem to steady the distension in stomach. Saw MRI and cat scan of liver look s fully cirriotic with ascites on top .Very small and shrunken. Possible living donor transplant candidate because all other tests are good. I get the sense that this disease is such an epidemic that the medical field has accepted that if your not close to dying we really cant do much. Iam not judging, just noting. It seems many of us are in for a very long and hard road ahead. My deepest sympathies to all who have esld!!!!!!!!!!!!!!!!!

peace to all   follow the breath inside the breath


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/18/2009 12:30 PM (GMT -7)   
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
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


2young2die
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/18/2009 12:49 PM (GMT -7)   

Thanks gateway 40!

I'm so sorry anyone has to have this awful ESLD.  I guess there are a lot of us that were around to get infected without knowing it and before blood was tested.  Like I said, I'm so sorry you have to go through this, but it's great to know I'm not alone.  And it does seem like it's so hard to get a straight answer from the doctor.  I don't even know if I have a MELD score - just really high ammonia.  They're surprised I haven't had a coma yet, but retaining fluids hasn't been a real problem.  However, I am starting to get bad scores on my kidneys.  There's just so much I don't know and I'm very grateful to have found this site and especially people like you.  I think the hardest thing for me is the fatigue.  I want to be playing and helping my grandchildren like I used to.  When they actually ask me for the old grandma that could do things it just breaks my heart.  And I remember how I felt when I found out that my own mother was going to die - I see that same look in my two daughter's faces; they're scared, but right now no one really wants to talk about it - we all just kind of pretend.  I feel so sorry for them and my wonderful husband of 34 years.

Take care and stay in touch yeah


2young2die

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