End Stage Liver Disease

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achariane
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/9/2008 11:31 PM (GMT -7)   
My husband has just come home after spending 3 months in the hospital with complications from end stage liver disease. I am trying to be creative with meals although he has no appetite and I am a lousy cook so this is not going very well. He is taking lactulose and other medications which make his quality of life pretty rough. Any suggestions would be greatly appreciated I would just like to be able to have someone to chat to that is going through the same thing. I tried getting an idea from the doctor as to how long someone can live like this but they do not give me any idea of what to expect. His meld score is 17. I don't know if he is too weak at this stage to be on the Liver Transplant list or if he is not as critical as others they say he meets the criteria but does not qualify Thanks for any help you can give.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/10/2008 4:30 AM (GMT -7)   
achariane, hi and welcome to HealingWell. I am so sorry that your husband is suffering with liver disease. I think that you are probably doing a fine job with the cooking for him. He may be able to digest fruits and vegetables without too much difficulty. I am not sure what your Dr has said about his protein intake but if he is not protein restricted then a normal well balanced diet is fine. You may want to have 5-6 small meals a day because at end stage they are not very hungry usually. The small meals seems to work faily well for them. The Dr's are not too likely to give you a time table on his life expectancy as there are too many variables. As far as their response concerning the transplant list-I myself don't see their comment "they say he meets the criteria but does not qualify " as a very responsible one. Ask again next time you see the Dr and if they repeat that statement ask them to clarify and explain to you why not. There are medications that the Dr can Rx to increase his appetite so ask about them on the next visit. You will find that this forum wonderful, the members are well educated on liver disease and are compassionate and caring.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/10/2008 4:28 PM (GMT -7)   

Hello Achariene,

       Welcome to the forum. Please feel free to lay it all on the line hear. One thing we are is great listeners. I know this forum has helped me tremendously. I was diagnosed with hepatocellular carcinoma (liver cancer) due to ESLD in Feb 07. Was given a meld score of 13. I received exception points every 3 months because my tumors were a specific size. This past Feb 17th I received a liver transplant and have been doing great since. I never thought I would make it to transplant but I did. Keep the faith and ask questions. Write them down as you think of them so you do not forget them when you see the drs. My wife knows exactly how you feel, but is not good with forums or chat rooms. As she and I speak I will try to convey her thoughts to you. Keeping you both in prayer. Delivered by the mailman.

 

 


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 4/10/2008 6:27 PM (GMT -7)   
Hello Achariane,
Welcome to HealingWell. I am sorry about your husband. I have been in your shoes. You see my husband loved to cook and did all of the cooking. When he got so sick that he couldn't cook anymore I had to take over. Well it didn't go too good either. Not that I am not a good cook...he was just use to his own cooking. Just hang in there. Remind him that you are doing the best that you can. And that if he wants to survive he needs to eat. Like it or not.

Little meals were better for my husband to keep down. He ate lots of fresh veggies, chicken, turkey, fish, beans, peanutbutter, and pork. We noticed that the red meat really reeked havoc with his ammonia levels. So he didn't it much beef.

They didn't say why your husband didn't qualify? I would definitely ask why? My husband couldn't drink alcohol, could only take the drugs they prescribed and no smoking. Because he was a former drinker he had to go to AA. He also had to lose 100 lbs. My husband developed liver cancer. And the tumor or tumors couldn't go over a certain size or have more than 3 tumors. Also age may disqualify some.
Does your husband have health insurance? Does it cover transplants? I am just trying to figure out why he didn't qualify.

Take care of yourself too. It's very easy to get over-whelmed and over-worked during this time.

Stick around.....We'll be here when ever you need to vent or ask questions.

Thoughts and prayers for both of you.
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.


achariane
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/10/2008 8:18 PM (GMT -7)   
Thank you so much for your responses. It is so reassuring to be able to talk to others that are in the same position as I am or are going through the heartache themselves of struggling with the disease. I was confused too about the criteria for transplant but not qualify for one. The more I thought about your answers the more questions I have for the doctor. Thank you so much again. As for the cooking well.... I am learning small is better and I have stopped going to the store and trying to buy every low sodium soup, cold cuts and chicken!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/15/2008 4:11 PM (GMT -7)   
How's things going Achariane,

Is your husband eating any better? I hope so.
Being a caregiver is very hard work. Remember to take care you yourself also.


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.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/15/2008 9:51 PM (GMT -7)   
Hi achariane,
I'm sorry to read about your husband. Welcome to the forum -- I find it a great help in coping.
In my opinion, you already have found the best lesson in helping your husband. Keep asking questions, and if you don't get what you think you need from the Dr., don't hesitate to try another Dr. at a different center for a second opinion.
Your husband is fortunate to have you as his advocate. Pink Grandma pointed out the second lesson, which is to take time to take care of yourself. It is important for both of you. There may be times when he seems irrational and if so, you will need your strength and inner-calm.
I am quickly approaching where your husband is now so these are things that roll around my mind when I'm up all night.
Keep the faith and I wish both your husband and you the best in this trying situation.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/16/2008 1:22 AM (GMT -7)   
achariane,
There is'nt much I can add to what has been said . This forum has been really helpful in dealing with my situation. Especially in understanding what the caregiver is going through. I try to control myself , but sometimes I just can't say the right things. Since the only thing my husband can't do is cook . I try my best. It's difficult going from being a good cook to burning everything. This past week was very good , I actually gained a little weight. Good luck keep posting

mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/16/2008 8:38 AM (GMT -7)   
Hi to all. I'm glad I don't have to deal with cooking issues as my wife is a great cook. I just do not like the diet since I am now steroid induced diabetic after transplant. I am progressing well and putting on some lost weight. I was very lucky to receive my transplant when I did as they said I would not have lived to see today had it not happened. As a result we are having a "Celebrate New Life barbecue" on May 17th, exactly 3 months after transplant. I wish there was some other info I could give to help but Grandma and John have pretty much summed it up. Oh, by the way, my daughter gave birth to a beautiful baby girl on Mon. 4/14 at 5:36 am. I am a Pop-Pop again. I am so very blessed. Please, as always, keep the family of the young man who's liver I received in prayer. I would not have witnessed her birth if it was not for the transplant. Delivered by the mailman.

julieadele
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/16/2008 9:14 AM (GMT -7)   
hi i'm julie and my dad is currently in the hospital with a non-alcoholic form of cirrhosis of the liver. they say it is end stage-he is taking a lot of lactulose and has very good days and very bad days. they are saying that he is uneligible for transplant evaluation at this time because he is too weak. (he also has kidney failure and diabetes) My question is should we seek a second opinion on this? doesn't his advanced condition facilitate immediate evaluation? I don't understand how they can just sort of give up on him.
I'm new here.
Thanks

mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/17/2008 4:51 PM (GMT -7)   

Julieadele,

            I would definetly seek a second opinion. Ask how they evaluated him to come to the conclusion they did. I wish you and your Dad the best. Keep us posted. Delivered by the mailman.


julieadele
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/17/2008 7:08 PM (GMT -7)   
His meld score is 32. What exactly does that mean? anybody know? plus yesterday they were talking about hospice and today they are talking about transplatation. What the hell?

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/17/2008 7:41 PM (GMT -7)   
Hi Julianne and welcome to HealingWell. I am sorry that your dad is so sick. It is really difficult to see your loved one suffer so much. As for the transplant list question I agree with the mailman. First I would have specific questions for his Dr. Such as what criteria do they base their transplant listed patients on. Second, why was your dad refused and hospice offered? What can be done to get him on the list? Each facility has their own set of rules for transplantation lists. MELD scores play a major role but so do other things. I would ask for specifics. There is so much confusion for families and I don't think Dr's make it very clear. It is up to you and your family to ask the questions and get the answers. If the Dr gives you a conflicting statement or comment I would stop the conversation right there and have them explain their response. It is the only way for you all to get the information and answers you are asking about. Don't be afraid to ask anything as you are paying them to do their job-they aren't paying you. I will keep you and your dad in my prayers. Post as often as you want and ask whatever you are confused or concerned about. We will help you any way tha we can.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


julieadele
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/17/2008 10:16 PM (GMT -7)   
thanks shelly,
i am quite confused actually because yesterday the doctor was speaking of hospice care and today they are talking again about transplantation. we told him that giving up was out of the question, so he sent in the transplant team to talk to us. strange right?
i don't understand. does what you say hold that much wieght?

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/18/2008 12:00 AM (GMT -7)   
Hi julieadele,
Again, I am sorry that you need to be here -- but in your situation I can't think of a better place to be.
My understanding of the MELD score is that is a gauge of one's chances of surviving the next three months based on blood tests. The fact your dad has a MELD score of 32 is serious. I have been told that the range of scores is 6 to 40, with a transplant suggested at the 15 to 16 range.
15 to 16 is considered critical enough for the very expensive operation (over $400,000) but with enough survival time for the mandatory six month pre-screening period. The pre-screening checks the heart, lungs, etc. and verifies no addictive tendencies by testing for alcohol and cannibus in the blood.
You haven't indicated if your dad has done any transplant pre-screening so the Dr. may have assumed the worst with a MELD of 32 out of 40. That is a mistake on the Dr's part, which may be why his sudden turn around. Depending on the person, the MELD score can remain fixed for months, especially if diet and exercise are appropriate.
IMHO, the best course is to focus on keeping your dad as strong as possible and in as good spirits as possible, while pushing the Dr. to be as proactive as possible.
While the outcome is always uncertain, we can try the best we can, love the best we can, and always expect a miracle.
I have no doubt that you will be the best possible advocate for your dad, and it is my hope and prayer that all works out to the best possible outcome.
Keep the faith and don't let the doctors get you down.
Be well, John

Post Edited By Moderator (Pink Grandma) : 4/18/2008 1:35:11 PM (GMT-6)


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/18/2008 5:12 AM (GMT -7)   
Julie, John's answer was so true. You have to keep your dad on a good diet and follow ALL the instructions that the Dr gives him. The fact that the Dr started talking about the transplant team is a good sign. Maybe he/she had to know that you were determined to fight. Stay positive in your attitude even when you don't feel like it. Keep your dad in as good of spirits as you can too. Hope is always there and NEVER give up. 

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/18/2008 12:49 PM (GMT -7)   
Hello Julieadele and welcome to HealingWell. So sorry that you and your father are going though this.
I couldn't agree more with John and Shelly. Sorry John I had to edit....we have young kids that frequent HealingWell.
Anyway Julieadele, If your dad makes it to the list he will surely be put at or very near the top of it with that meld score. It's tough dealing with so many health care professionals. But right now if he makes it to be evaluated you definitely need to listen to the transplant team. If they ask for a back flip give them a double back flip.

Are you the major caregiver for your dad or his advocate? Do you work? I just want to tell about the Family Leave Medical Act (FMLA). It is a federal program designed to help families deal with major medical issues and not lose their job. Check into it, if you need it.

Good luck and 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.


julieadele
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/18/2008 2:01 PM (GMT -7)   
i will! thanks so much!

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/18/2008 9:29 PM (GMT -7)   
Hi Pink Grandma,
Sorry, I wasn't thinking. Thanks for paying attention, obviously I wasn't. Here, that phrase is second only to: "For God, for Country and for Yale."

Hi julieadele,
Good luck and keep us up to date.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/18/2008 11:38 PM (GMT -7)   
Hi John,
I totally understand. But as this is a family type forum, which have rules that I have to enforce as a moderator.
And thanks for being such a great support to others while you are battling this horrid disease.

Julieadele, I hope we have helped you. Please come back anytime to vent or update when you can. As you see our members are very knowledgeable and compassionate.

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.

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