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Posted 7/28/2007 5:33 PM (GMT 0)
Hi, I am hoping that someone may have some suggestions for me.  My 65 year old dad had an extremely high level of amonia in his blood due to his liver disease.  This landed him in the hospital as he became disoriented and could not remember the day of the week. It has been a month since is out of the hospital.  He is taking lactulose which is to help keep the levels down.  He is extremely uncomfortable and spends most of his day going to the bathroom.  Does anyone know of anything he can do so he does feel so ill from lactulose? I love my dad and hate for him to be uncomfortable.  My mother is angry cause all he does is complain about this.  I think I would be upset if I spent my day in the bathroom and was uncomfortable.  I would appreciate any suggestions if you have any!!!

Thank you. eyes

Posted 7/29/2007 4:26 AM (GMT 0)
First of all welcome to our forum Shven, You found the right place. We have a bunch of nice and knowledgeable people here.
First of all how much and how often has the doctor ordered your father to take the lactolose? If he is going to the bathroom more than 3-4 times a day other problems can develope. My husband took lactolose and his doc's had to keep changing how many times a day he took it depending what his system was doing. He took lactolose for about 2 1/2 years and then it wouldn't keep the amonia levels down anymore. They then started givening him Xifaxan along with a lesser amount of lactolose which seemed to work better for him. At least he spent less time in the bathroom and his head stayed clear. So maybe he should talk with his doctor and see if his doctor thinks if it would be good for him.
Is there any chance for your father to get on a transplant list?
My heart goes out to both you and your mom. But especially your mom as I know exactly what she is going through. It's very hard to be a caregiver for someone who tired and cranky most of the time. Most of the time it seems that they don't appreciate all that you are doing for them. Believe me it takes it toll on the caregivers. I guess what I am trying to say is don't think that your mom is cold or heartless. She's probably over tired, over stressed and scared silly as to what the future may hold. It's the hardest job that I have ever had. And believe me I felt like giving up more than once. Get educated on this hedious disease and be there to support not only your father but your mom also. It is very difficult for one person to organize and do everything that the doctors want done. Like all the tests and blood work not to mention all the doctor visits. Then there's the nightmare of the insurance (what it covers and what it doesn't and making sure all the pre authorizations are gotten before any tests. Hoped this helped some. My thoughts and prayers will be with you and your family.........Pink Grandma
Posted 7/29/2007 4:23 PM (GMT 0)
Pink Grandma,

  You are wonderful for responding and sharing that info with me. My parents have asked me not to come with them to the next Doctor appointment and seem to feel that the internet is a bad place to do research.  they were concerned that I might overload the doctor with questions.  My dad told me that he wanted his health to be his own business and feels that this is private for him and my mom.  Kind of difficult to  help if I can not.  I do believe that my mom is stressed and will try to be more understanding.  As far as the situation goes,  my dad is not a canidate for liver transplant at this point.  He has other health probs,  possible heart condition, kidneys spilling protien into his urine and the liver disease.  I guess if nothing else, this forum may help me understand this better.  I just wish my parents would not operate like my dad's health is a business.  My dad was a lawyer and retired in December and so I guess this is his business to focus on.  I hope your husband is well.  My dad was at my house and in the bathroom about 3 times and I think that is the way it is daily.  Maybe I will be able to share what you have said with him when things calm down for  us.

Thank you.

-shven

Posted 7/30/2007 5:39 AM (GMT 0)
Shven, hopefully you can share some info with your parents. There is alot of good information online you just have to go to reputable sites. There's alot of organizations that deal with liver disease and they have web sites with a wealth of information. Google endstage liver disease see what comes up. But, it is your parents business about his health. They probably don't want you to worry is why they are keeping you out of it. For myself I was more scared not knowing what to expect than after I educated myself. The doctors weren't a whole lot of help in the education dept for me. At least I knew what we were up against and could take steps to fight it once I got educated. My husband started calling me Dr. Dianne. (In a sarcastic way.)
My husband is now in a better place now, he past away last April. He made the transplant list for 2 weeks before they had to take him back off.
Come back as often as you like. We are here to try to support each other though these tough times. Thoughts and prayers........Pink Grandma
Posted 7/30/2007 4:10 PM (GMT 0)
Pink Grandma,
I am sorry for the loss of your husband. It sounds like you did lots of research to get you through the rough times. I give you lots of credit.
Thank you for the feedback and giving me advice where you can. I will definitely email from time to time.
Support is something I will certainly need and I am glad that I connected with you!!
Shven
Posted 8/3/2007 7:13 PM (GMT 0)
Pink Grandma and anyone else,

   My dad just learned yesterday that he will need a liver transplant since he has advanced liver disease.  It was a shocker since he had been told that he would not even be needing that.  Anyways,  I guess, I am looking for maybe a place to get involved with fundraising for this and educating myself as best as I can.  I'm in shock just want to do what I can to understand this and be helpful in someway to a foundation for this if there is one that exists.

Shven

Posted 8/4/2007 3:28 AM (GMT 0)
Oh Shven, I am so sorry to hear that your Dad needs a liver transplant.
It is an exhausting quest. Hopefully your parents will let you help them with education and support. Your mom's going to need all the help and support that she can get to try and get your dad to appointments with doctors and all the testing that they do for the evaluation. One thing is that someone has to be your dad's advocate. As he won't be in any shape most of the time to make sure that everything is taken care of. I think that maybe your mom will want to handle everything herself but you can give her advice and suggestions if you get yourself educated. I don't know where your are from but the healthcare system in the U.S. needs alot of work. You have to stay on the doctors to make sure that all the tests are done when they are suppose be. Some doctors want bloodwork done weekly,bi-weekly or monthly. CT scans were done on my husband ever 4-6 months. He was having so many tests that I had to get a tablet and write them all down. I also took notes at every doctor visit. It was me reminding the doctors to order them and me reminding them to get the preauthorizations also. I was emailing,faxing and calling doctors weekly. I ended up having the lab faxing me his blood work at my job so that I could call the doctor with the results and discuss what my husband needed next. Doctors and nurses are human. They make mistakes all the time. You have to be very viligent with your dad's care. Do not be afraid to step on toes to get things done. Please give my regards to your parents. My thoughts and prayers will be with you all. Pink Grandma
Posted 8/4/2007 4:06 PM (GMT 0)
Pink Grandma,

  We live in Chicago in the Northwest suburbs.  My dad has been using a clinic at the University of Illinois Chicago Hospital that specializes in Liver Disease.  It is unfortunate that the first doctor in June failed to let him know that he was at advanced liver disease.  They went for the appointment on Thursday and the current doctor started talking about advanced liver disease and my asked what patient they were talking about.  Apparently, there was a mistake made there.  My mom was frustrared and so hopefully here on out we can hope for the correct things to be done.  I am sure mistakes will happen.  I hope my mom will be strong enough as an advocate and when she is ready for us(me, my sister and twin brother) to step up and help we are all willing to do that.  My brother will be living in Arizona, but my sister and I are both here in Chicago about 30 min.from my parents.  It is nice to get some responses from someone like you.  I am planning to do the walk for liver research here in Illinois in October with whom ever wants to in our family.  I would also like to get involved and volunteer with them. 

     When my mom is willing to listen I will mention the importants of tracking all of the tests and keeping on the doctors.  She was a lab tech when we were kids and so she does have some medical knowledge which is good.  My dad and I have not talked much and I think that is because he does not want to talk solely about his condition. I had been calling him daily and he enjoyed that, but now it is a different situation for him.  He has Type B Blood and apparently that is not so common so it may work in his favor.  Thank you for your thoughts and prayers.  You seem like a  very sweet good natured person and I find it helpful to get support from  you.  thank you!!  Have a good weekend.

-Shven

Posted 8/5/2007 3:07 AM (GMT 0)
Shven, transplants are expensive, but Medicaid pays for them if your dad qualifies financially.

Connie
Posted 8/5/2007 3:57 PM (GMT 0)

I kind of figured that a transplant is expensive.  I believe my dad has medicaid.  the next step is for him to be given the okay to be on a list.  I sure do hope that will happen or his life will not have much in length or quality. 

Shven

Posted 8/20/2007 5:41 PM (GMT 0)

Shven said...
Hi, I am hoping that someone may have some suggestions for me.  My 65 year old dad had an extremely high level of amonia in his blood due to his liver disease.  This landed him in the hospital as he became disoriented and could not remember the day of the week. It has been a month since is out of the hospital.  He is taking lactulose which is to help keep the levels down.  He is extremely uncomfortable and spends most of his day going to the bathroom.  Does anyone know of anything he can do so he does feel so ill from lactulose? I love my dad and hate for him to be uncomfortable.  My mother is angry cause all he does is complain about this.  I think I would be upset if I spent my day in the bathroom and was uncomfortable.  I would appreciate any suggestions if you have any!!!

Thank you. :-)

Posted 8/20/2007 10:29 PM (GMT 0)

thanks blondie,

   today my dad learned that he has a blood clot on his liver.  In addition he has a polyp in his pancreas.  Hopefully, those two things will not interfere with his changes to be accepted to a list for a donor.  Does anyone know anything in regards to how serious a blood clot is on the liver?

 Just thought I would ask. 

-Shven confused

Posted 8/21/2007 1:49 AM (GMT 0)
Hello Shven, I just wanted to pop in and see how you are holding up. I am not familiar with the blood clots on the liver. It's not something that happened to my husband. Hopefully someone will have some info for you soon. Thoughts and prayers are still with you.......Pink Grandma
Posted 8/21/2007 3:29 AM (GMT 0)

Pink Grandma,

  I am hanging in while my dad is having many tests to find out if he is eligible to get on a list for a transplant. 

  My dad is going back to the hospital for more tests on Wednesday.  I guess this is the way it is supposed to be with going for tests each week.

  I am being strong for both of my parents. My sister and I are trying to go by their house at least 1-2 times a week and have them over for dinner. 

  I have some difficult moments and then I think I am okay.  Not only is my dad sick, my father in law has myeloma.  We are pulled to the extremes a lot. 

   I hope that we will get some good news for my dad, but am prepared as best as I can be for whatever I here.

  Thank you for your sweet note. 

-Shven

  :-)

Posted 8/21/2007 3:45 AM (GMT 0)
shven, one suggestion is,,,,,,,eventually you mom will need a break from caring for your dad, even if she doesnt realize it, so watch for signs that she needs a break, and give it to her, even if only a few hours a week to get out and take care of herself,,,,,,,,good luck and welcome to the forum(im always behind on things ,sorry)
Posted 8/21/2007 3:52 AM (GMT 0)

Thank you very much for that email.  I have been trying to give breaks when I can and will do more as I need to.

-Shven

Posted 8/23/2007 2:24 AM (GMT 0)
shven, How did your father's testing go today? I know it's an awful lot of them that they require but they need to know just how damaged the liver really is and if there are anything else going wrong also. Hang in there, I know it hard but you can do it. Your parents need you during this terrible time. Remember we are just a click away when you need support. :-)Pinkgrandma
Posted 8/23/2007 4:37 AM (GMT 0)
Pink Grandma,

   Hi there!  Well, today my dad was informed that his levels are increasing(not sure what the numbers are), but you probably will understand better than I.  Anyways, they have explained that cause the numbers continue to go up they need to hurry the tests to get him on a liver donor list as soon as possible.  The theory is that the higher the numbers, the more difficult it will be for him to do well with the new liver and recover.  So far, the heart, kidneys and lungs are okay.  they will do a stress test on friday and next week his case will go before the hospital board or something like that.  I guess this is good and bad cause he is continue to get sicker, but he is that more closer to getting through the tests to get on the list. My sister and I have talked about alternating watching each others kids each week to spend time by my parents and help out even to give my mom a bit of relief.

I think my dad is just anxious to feel better and see a light at the end of this tunnel. 

  Thanks for checking in.  I am glad I have joined in on this forum.  Every little bit of feedback helps.  I hope you are doing well and of course I will continue to click in as this process continues. 

:-)  Shven

Posted 11/14/2008 3:47 AM (GMT 0)
Dear Shven and Pink Grandma,

I received a liver transplance l 1/2 years ago. I became very ill and my husband was my care giver. It is an exhausting job and takes a very special person, to give such emotion and care, draining you of everything. Your efforts do pay off in the end. I was lucky enough to be given the great gift of life from a 32 year old donar. She was in an auto accident, that is all that I know. My heart goes out to her family. I tried to communicate with them, to give them my love and my grief for their loss, as I, too, had lost my 27 year old son just the year prior to this. He, too, donated his organs, saving many lives the night he went to heaven on August 24th, 2003. I became ill just 3 months after loosing my son, due to stress or whatever, with cancer. Having surgury to remove a 9 lb. tumor attached to my spleen, I then started CHOP chemo therapy. It was a very strong therapy and caused my already diseased liver to go into failure. I had been diagnosed with Hep C in 1991. This was inactive for years and then remained in the mild stage. I first started to feel very sick to my stomach, not able to eat, loosing weight. I was unable to go to the bathroom. I ended up at the emergency room with amonia levels well over 100, not knowing how to do anything. I did not know I hadn't been urinating or having bowel movements. I guess I was too confused to realize this. It happened very quickly. To make a long story quick, no hospital in the area of D.C., Maryland, Virginia would help me, as I had cancer and I needed a liver transplant. I found the Mayo clinic in Jacksonville, Fla. and it changed my life. They accedpted me, regardless of being a risk. I did everything my doctor at Johns Hopkins told me to do to extend my life to wait for a 2 year remission period for my cancer, then I was put on the list in Florida. It only took 2 months and 9 days for a transplant! Had I stayed in the area I lived, I would never have gotten on the list, and even if I did, it would have been a minimum 3 year wait and I had only 1 year to live, and I had already stretched this to 2 years. I was  very ill. I met many, many people that had insurance issues, other health issues, that other hospitals turned away, and Mayo clinic helped saved their lives. Look them up on the web. They are truly remarkable. Good luck to you both. I know what it is like to go through the heart ache of loosing someone you love and also the fight it takes to survice an illness that is out to beat you, but you just don't let it.

God speed. 

Posted 11/14/2008 5:25 AM (GMT 0)

Poptart, welcome to the forum!  Unfortunately, you picked up on an old thread from last summer.  I'm not sure what has happened to Shven or her dad.

But I must tell you--we could be twins!  I also was diagnosed with hep C in '93 and developed liver cancer in '95.  At the time, I was going to Shands Jacksonville, as I had no insurance.  They just said, "We are so sorry."  In other words, nothing they could do.  I contacted Mayo Jax (I live here in Jax) to see about a transplant.  I fortunately got Medicare right around that time.  I wasn't a candidate for a transplant, but Mayo did save my life.  I had a study drug, plus chemoembolization, plus surgery to remove the entire right lobe of my liver.  I also had my left hip replacement revised there.  Their entire staff couldn't be more skilled and knowledgeable, or more motivated to help the patient.  I even have financial assistance from their charity fund, for anything that Medicare doesn't cover.  The only reason I am staying here, rather than moving to the Gulf Coast, which I prefer, is to be close to Mayo.  They continue to follow me with scans every 3-4 mos., as well as blood work.  If the left lobe of my liver becomes cancerous, I would then need a transplant.

Please start a new topic to introduce yourself, so you don't get lost in the cracks of an old thread.  You have so much personal experience and knowledge to share with others here.


Posted 11/15/2008 1:08 AM (GMT 0)
Welcome to the forum Poptart. Wow! What an inspiring story. I am so glad you made it through all that. I am glad you found us. I hope you decide to stick around. You could really be an inspiration, just as Connie is around here. Thanks so much for sharing your experience.
Posted 11/15/2008 3:25 PM (GMT 0)
Welcome Poptart..........I started a new thread for you as I did miss your posting......

Also Shven's father lost his battle with liver disease back on March 8th of this year............Shven if you are still reading the posts please know that our thoughts and prayers are still with you.........
Posted 6/15/2009 1:50 AM (GMT 0)
Hi I'm glad to have found this board; I am hoping it will provide me with some answers.  At the end of April, I lost my mother unexpectedly.  I knew she had a drinking problem (we all did) but I had spoken to hear just a few days earlier and she seemed fine.  Then I started calling her and it would take several hours (or a day) before she answered and she seemed so disoriented and incoherent.  I finally convinced my brother to go check on her and she was found lying face down on her living room floor barely conscious.

She was taken to the ER and found to have liver failure, an extremely high amount of amonia in her blood and a lack of nutrients in her body.  I, unfortunately, was out of town and was unable to BE at the hospital during this time...even though I was on my way there.  She died before I could arrive.

My concern now is that the doctors (I am requesting the medical transcripts) did not do anything, or perhaps enough, to try and treat my mother while she was in their care.  She died of cardiac arrest, after her heart stopped several times.  The reason why I question the hospitals action is that the DOCTOR (and I use that term lightly) told me that I need to 'understand that people die, especially a woman as old as your mother."  -- my mother was 62.

I am sure she had chirrosis <sp> and or acute liver failure.  She, I was told, was extremely jaundice. My concern is I have read and seen SO MANY treatments for amonia in the blood, jaundice (including UV lights), liver failure and chirrosis... I have also seen and read where people much older than my mother pulled through from these things - even if that recovery was hard.

I guess I am looking for answers.  I want to know if those conditions are fixable, what should have been done in that situation to try and help the person and then I guess I need to find someone who can review the medical transcripts to see if they really DID try to treat her....or just elevate her condition so she could die in more peace? I don't know.

Any thoughts or suggestions would mean a lot to me.

Thank you

Jason

Posted 6/15/2009 3:50 AM (GMT 0)

Jason, I am so sorry for the loss of your mother unexpectedly.  From what you've told me, it sounds as though she was still drinking although she obviously had end-stage liver disease.  It also sounds as though she didn't have any previous treatment for her high ammonia or the liver disease.  If this is the situation, I doubt that anything they could do at that point would've made any difference.  Yes, sometimes people come through and live longer than expected, but they have been fighting the disease and getting various treatments (Lactulose for high ammonia levels, special diet with elimination of red meat, paracentesis (draining of the fluid in the belly), etc., for some time.  I have never heard of anyone as far gone as your mom apparently was be treated and do a complete turnaround.  There comes a point of no return.  While every individual's case is different, it doesn't sound like she was getting proper medical attention, eating nutritious food, or getting help with her alcohol problem prior to the trip to the ER.

Do you know if she had a DNR order?  If so, they could not have performed any extraordinary measures to keep her alive.

It is very natural for you to be angry and try to place blame somewhere, but I will tell you that if her condition was caused by alcoholism and she had not tried to stop drinking or to seek medical treatment for her deteriorating condition, the ER docs are not likely to be jumping through hoops for her.  Until you get those reports, you won't know exactly what they did, though.

I hope that you can feel better in the knowledge that your mom is no longer suffering and is finally at peace.

Hugs,

Connie

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