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Mother Diagnosed with Non Alchoholic Advanced Cirrhosis

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Posted 11/8/2009 5:33 AM (GMT 0)
After four years (if not more) of shrugged off individual symptoms such as low blood pressure, insomnia, fatigue, itching on the legs, confusion, culminating in a one week stay in the hospital (released on 10/25), my 62 year old mother has been diagnosed with advanced cirrhosis. She has been told a transplant is her only option at this point. She is scheduled on 11/19 to go for endo and colonoscopy screenings to check for any clots that can disrupt blood flow and after that, a biopsy is anticipated. These tests, and the biopsy are set to take place at the hospital where the transplant will hopefully take place once her "score" is determined. Does anyone know if partial transplants from live donors can be done in end stage cases? I can't seem to find a clear answer anywhere on this. I have two siblings and my mom has three sisters and a brother.

My father (69) is her primary caregiver, and I her secondary but I live 2 hours away by bus in a city and can only get there on weekends (the other siblings are very far away). I was there today and she seemed very low energy, shaky, and was itching a bit on her legs. She has lost a bit of weight and has a swollen belly due to constipation and I am guessing fluid retention. She has been drinking a glass of 2 parts prune, 1 part oj per day and she feels like it is helping her in that respect. What concerns me the most is her confusion, in that she didn't call two doctors who she was supposed to see within a week of being released (and it is now two) - her GP and Urologist (she also has a cyst and a lesion in a kidney). This fact has made me realize that I need to jump in and take a much bigger role than originally anticipated. Until she gets in to see her doctors (I sat next to her as she called both and left messages today), I went ahead and printed out a low sodium diet to fax to them - eliminating red meats. I have been reading around forums and have read about people using herbal supplements like milk thistle and turmeric. I was also wondering - would a multi vitamin and fish oil/omega 3 supplement be of any benefit? Is any of this of any use at this point?? I am trying so hard to be strong and keep it together and try to be as positive as possible but I am so afraid after seeing her in the hospital and then again today. The jaundice has subsided, but the other symptoms are frightening. What is the best thing to do at this point? Are the supplements and diets I mention all in vain?? My thinking is that it could help to keep her strong and get some of her energy. I also hear in transplant cases that if the patient loses leg function that they become ineligible and today she seemed okay once she was up, but had a hard time getting on her feet. I need to help her, and I need to help my dad take care of her since I can't be there as much as I wish I could. She has no insurance and is covered on a charity care system through the local hospital - her stay and all tests were covered, and she will register again at the transplant hospital. Can she try for more than one hospital? Also, does anyone know if she can apply for Medicaid since she is too young for Medicare?

I'm so sorry for all of the scattered questions but this is the first time I am having to deal with being a caregiver in any capacity. Taking some time to pray, and gathering information about the condition is all I know to do at this point and I have been moved, saddened and comforted by so many of the personal stories shared on the forums here on Healing Well and other places I have been to. It is a relief to me to be able to have a place to discuss all of this with people dealing with the same thing - thanks so much and peace to you all.
Posted 11/8/2009 4:19 PM (GMT 0)

Tj, welcome to the forum.  I am unable to answer your questions right now, as my sister is here from out of town.  I will be back later and will post then, but wanted to welcome you.  Perhaps someone else can address your questions while I am unavailable.

Connie

Posted 11/8/2009 7:07 PM (GMT 0)
Thanks so much, Connie. Your story that I have been able to follow on this forum is an inspiration and glimmer of hope for me. I hope you have a wonderful visit with your sister and look forward to your reply when your schedule permits. Thanks again,
TJ
Posted 11/8/2009 7:36 PM (GMT 0)
i would go with her to her doctor and ask all the questions you can think of. keep her off red meats, absolutely no alcohol, and watch any meds like tylenol, advil, or anything. dont let her take anything without discussing it with her liver doctor. she will need a liver doctor.
Posted 11/8/2009 10:17 PM (GMT 0)

Hi, again TJ.  I suggest you read the information in the Hepatitis Resources folder at the top of the Hepatitis Forum page.  The confusion you speak of is probably hepatic encephalopathy.  This is caused by the liver being unable to filter out ammonia and it goes to the brain.  The treatment for this is usually Lactulose.

As Worried Girl mentioned, your mom should avoid red meat and alcohol.  She could probably benefit from a multivitamin without iron.  However, for other supplements you should consult with her doctor first.  They could be of no benefit and/or dangerous.

Any idea what the cirrhosis is from?  Yes, living donors are used at times, but it depends on the particular transplant facility where she will be seen, and if they do them.  Transplant centers are divided into regions.  I don't believe she could be listed with different hospitals.  Investigate what is available to her in her area and find a center and stick with it.  There is a ton of testing that takes place before being placed on a transplant list.  You wouldn't want her to have to go through that in more than one center, if it's even allowed.

If she follows a low-sodium diet with no red meat, eats a lot of fresh fruits and veggies, abstains from alcohol, and follows doctors' orders, she could possibly gain some strength and also be around longer than she would otherwise.

She does need to be seen by a hepatologist (liver specialist.)

Yes, she can apply for Medicaid.  In the comments section, put "terminal illness."  That will speed up the process.

I'm sure others here can give you more information than I have.  I'm sure you feel overwhelmed right now, but this is a great place to be able to vent, as well as read the experiences of others.

Hugs,

Connie

Posted 11/9/2009 4:43 AM (GMT 0)
Hi TJ and welcome to HealingWell. I can't add a whole lot more than Connie and worriedgirl has already given you.

Patients can get listed at more than one transplant hospital if that is what you meant.

Hang in there.........thoughts and prayers......
Posted 11/9/2009 5:49 AM (GMT 0)

PG, wouldn't each hospital want to run their own tests, or would they accept reports from one?  When I went to Mayo, I'd already had an MRI with Gadolinium, CT scans, blood work, a sonogram at Shands and had copies of those reports...but when I went to Mayo, they repeated all the tests plus more.  That is why I thought going to more than one transplant center would be out of the question.  But if they get to the transplant list stage, certainly I would think they could be listed with more than one hospital.  I was just saying that she wouldn't want to be evaluated by more than one hospital.

Hugs,

Connie

Posted 11/9/2009 1:32 PM (GMT 0)
Thanks again for such a warm welcome to the forum.

Worriedgirl, I hope all is well with you and your mom and I will be praying for you. Unfortunately, I live some distance from my parents and just starting a new job two weeks ago it's impossible for me to go to the doctors with her. I can really only be there on weekends to give my dad a break and keep them company, help out around the house, etc. Thankfully, my dad is semi-retired and can take her to doctors appts. I have been helping them make a list of questions as we talk about things and I told them to make sure to write down the MD's responses. She is also on a low sodium diet, and I have warned her about red meat based on what I have read in this thread and also in other posts. I guess what disturbs me is that meat was never mentioned in the hospital by any docs! Strange... Also, I picked up an Omega 3 supplement only, and put it on the question list if it's okay to take and if not, dad can take it. I think fish oil is one of those things that can help the rest of the body even if the liver is beyond help, but we'll find out from the doc first. Not bothering with the herbals yet, so I just picked her up some teas to try. Also asking about the non iron multi vitamin which will be important.

Mom is indeed seeing a liver specialist, and has follow up tests (endo and colon) scheduled for the 19th. These tests are being done at the transplant hospital recommended by her doctor so she can register there and start the process and evaluation. I was worried because she hadn't made appointments for follow up visits to her GP and Urologist, which she is doing today because she was supposed to see both a week ago. I am going to try to find out about the listing process because I heard from a few people that you can get on a list at more than one hospital (even if you are being treated at one). She is registering at Newark at her liver doc's urging, but here in the Northeast there seems to be a few good options. I guess we will know more after the 19th, but for now we are trying to keep her strong, confident and unafraid.

As for medicaid, my only concern is if it will jeopardize her charity care coverage - or enhance it. I am waiting for some advice from my uncle who used to work for S.S. to see what he thinks.

As for how she got the cirrhosis is anyone's guess. Her father died of liver cancer in his early 60's, but all the MRI's and everything else have ruled that out. She never drank (MAYBE a glass of wine at a holiday dinner, but that's about it), so we're all kind of scratching our heads. She smokes (though has cut back over the years) and drinks coffee and her diet was never that great but otherwise we're at a loss here. Her heart, pancreas, lungs and everything else are strong right now although she does have a cyst and lesion in one kidney that the liver doc or urologist aren't yet concerned about. She knows she can't take tylenol or anything without the doctors go ahead and wouldn't dare do so without it because she's too scared.

Right now she is strong and quietly confident that she will do okay, but at the same time a bit emotional, depressed and angry. We're doing everything we can to talk to her, keep her spirits up and encourage her not to be frightened. My siblings are both far away and they are helping by calling her every day to let her know that they are thinking about her and love her, as well as educating themselves so they know what we are dealing with. My dad, who has been waited on by mom for 40 years is doing great and has really snapped in to action taking care of her and making sure the house is running smoothly, etc. He's learning though, as we all are because caretaking is new to all of us. He now understands that if she doesn't call a doctor, he has to do it for her, etc.

Thanks again to all of you. I am overwhelmed to say the least but feel like I am adjusting to the new reality and staying strong for now. This forum is priceless, and I thanked God for it, and all of you, in my prayers last night before bed. Thanks again, and I will keep you all posted. xo
Posted 11/9/2009 1:52 PM (GMT 0)
cirrhosis can cause memory loss i believe. i know my mom has a horrible memory(for example if i tell her i close she thinks i open and if i tell her i open she thinks i close. i am tempted to tell her an opposite schedule lol) and if i dont go to the doctors with her she will forget the important questions and her doctor doesnt volunteer any information or if he does she forgets it. i would recommend either you or your dad keeping a list of all the medications she is on just in case it is needed and also get the records of her bloodwork so you can see if there is any change.
Posted 11/9/2009 9:39 PM (GMT 0)
Worried Girl, I really think your mom's memory problems are based more on her alcoholism than her liver problems.  Alcohol kills brain cells and the brain is one organ that does not regenerate.  She may also have blackouts, after which she would not remember anything that happened.  Short-term memory problems are also attributed to aging, particularly if one isn't exercising the brain by doing crossword puzzles, etc.

Tj, you sound like you are really on the ball in gaining knowledge about liver disease and acting as an advocate for your mom.  I stopped drinking coffee and switched to green tea.  I was never told about meat or diet at all by my hepatologist or any of the medical team at the transplant center.  Although I was not eligible for a transplant, that is where I was/am seen.  However, the P.A. mentioned that my blood work showed that I was eating well.  My palate just seemed to change after the liver surgery, so changes in my diet just evolved.  And I've never been much of a meat eater, anyway.  However, during transplant evaluation, one of the people that your mom would work with will probably be a dietitian.

What type of charity care coverage does your mom have?  I use Medicaid as a secondary insurance at Mayo, plus up until this year I was also covered by their charity plan, for anything that Medicare and Medicaid didn't cover.  I have Medically Needy Medicaid, not regular Medicaid.  I believe her having Medicaid will enhance her coverage.  For example, she would qualify for Life Line service with AT&T for her land line.  I have this and basically only pay taxes.  The Life Line credit pays the remainder of the residential line fee.

Hugs,

Connie

Posted 11/11/2009 8:05 AM (GMT 0)
I am currently going through the evaluation for liver transplant process and have some information on listing at various hospitals.

"National transplant policy allows a patient to register for a transplant at more than one transplant hospital. However, each hospital may have its own rules for allowing its patients to be listed at another hospital. Patients should ask each hospital whether it allows its patients to list at more than one transplant hospital. Generally, each transplant center will require the patient to go through a seperate evaluation, even if the patient is already listed at another hospital"

-Parterning with Your Transplant Team, US Department of Health and Human Services.

I am currently being evaluated at Mass General in Boston for a liver transplant, which has a rather long average wait time for a new liver, approximately 2-4 years. The evaluating surgeon suggested that after I complete the evaluation process at Mass General, that I may want to also talk to the Mayo Clinic in Jacksonville about dual listing with them since they have a very short waiting time for a new liver, approx. 3-5 months! The surgeon confirmed that Mayo would want their own evaluation but said that generally someone already approved for a transplant at one center might go through a faster evaluation process at the second center.

-K
Posted 11/11/2009 6:05 PM (GMT 0)

Kiersten, thank you so much for that definitive information--and welcome to the forum!  Mayo used to have an even shorter wait time than that, so their patient load must be increasing.  I can't say enough positive things about them, though, as they literally saved my life.  They pack a lot of appts. into one day, especially for out-of-state patients, so they can get all the evaluation done in a very short time.

Good luck with your transplant status, and again--welcome!

Hugs,

Connie

Posted 11/11/2009 7:09 PM (GMT 0)
Hi TJ, My mother was diagnosed at 65 with Non Alcoholic Cirrhosis. She went in to have her gallbladder removed and discovered her gallbladder had adhered to her liver (or vs vs) so she could not have her gallbladder removed. She had the symptoms of cirrhosis for several years, but no one knew. My grandmother, 2 aunts and my brother all have it also. The only one that drinks/drank was my brother. Who knows???

The lactulose works wonders for my mom. I can tell by talking to her if she has been taking the lactulose or not. She gets a little disoriented, confused, repeats herself. She is pretty good about taking it, but if she is going to have company or go somewhere she won't take it because of the bad cramping and big time diarreha. She really tries to watch what she eats and what meds she takes.

Be careful on vitamins, some of them have iodine in them (which is salt). So if you aren't sure ask the pharmacist.


I understand about being all over the place. I am either googling or calling!! Prayers to you and your family.

Cheryl
Posted 11/11/2009 8:55 PM (GMT 0)

TJ and caw, it sounds like your moms could have NASH (non-alcoholic steatohepatitis.)  This has a number of different causes, including obesity, diabetes, hyperlipidemia, and several drugs.  NASH can lead to cirrhosis and other complications.

Hugs,

Connie

Posted 11/13/2009 4:58 AM (GMT 0)
Hi everyone, and thanks so much for your input, replies, and sharing your own stories.

As far as I understand, she is on a charity care system that is run through the state, but isn't exactly Medicaid - but that doesn't make sense to me. Truth be told, the financial aspect is one that is so daunting that I have put it on the back burner for now and am therefore dwelling in ignorance. I have to get the information from my mom and and find out more... and from there see where we have to go. And besides, I think I'm going to pull rank as big brother and delegate that to little sister - you need not be near by to make calls to Social Services! I talked to mom earlier, and she was telling me that dad took her food shopping tonight (he isn't letting her go anywhere herself) and dad was analyzing EVERY food label carefully. She is committed to staying off of red meat, and I told her she has to balance her protein correctly in general. She is also eating a lot more fruit, and told me she is committed to changing the diet and sticking to it. Still have to work on the coffee, but she is drinking a lot more tea (mostly decaf black, and green, and I did send her some herbals to try).

Connie, thanks for everything and I hope this finds you well. NASH seemed the obvious answer at first, especially considering her issues with blood sugar over the years. However, she always tested neg. for diabetes. She was always mildly obese and also on a blood pressure medication for awhile but she is losing weight in her stomach. Her hospital report ruled out ascites and she is losing gradual weight in her belly. Gonna be a new clothes Christmas for her! I am just so happy right now that she is so positive and committed to feeling better and being as well as she can. Rick and Keirsten, all the best to you both in your evaluations and eventual procedures and thanks so much for sharing the useful information about the multiple transplant possibilities as well as the financial stuff. Our evaluation journey begins on the 19th with the colon and endo, followed by the trifecta of tests to get the score, so we'll see where we are at then. Do you both know your places yet? Please keep us posted and I will keep you in my prayers for sure. Cheryl, thanks for chiming in - it's nice to hear from another micromanaging child ;) Where are your mom and brother at as far as treatment is concerned? Are they being evaluated for transplants? I wish you and your family all the best. It sounds like we have similar situations. I very rarely drink, but given the evolving family track record I am getting tested for everything liver related by the end of the year and have urged my brother and sister to do the same. The lactulose is on the list for the Hepatologist on the 19th, but she has sounded really great on the phone the last few days. She sometimes repeats herself in that she might tell me something today that she already told me yesterday but she sounds stronger and is coherent. Can any of you suggest a healthy multi vitamin, btw?

Anyway, thanks all again for hearing me vent. Thoughts and prayers with you all!
TJ
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