weight gain diet

Hi
I am new to this site and am learning as much as possible about the disease. My husband has end stage liver disease. We had been seperate for the last year. He was diagnosed back in sept last year but since he had no insurance, nobody would do anything. Fast forward, he finally got ssi and medicaid. He told me about the disease in feb. He didnt tell me before because he didnt want to add that stress to toher things that were going on in my life. We separated due to him and my son not being able to cohabitate.
We are back together and I am trying my best to take care of him. The dr's have given him only a couple of weeks if we cannot get a transplant. We go on april 7th and 8th to start the testing to see if he can get on the list. I dont know that he can make it that long or that he will be strong enough to even go thru the tests. He goes for weekly parasentisis and thorasentisis. He has about 10% lung function due to the ascites build up. Yesterday was a bad day, they removed 2.8 liters and he had such a coughing fit they had to stop and give him oxygen. last week they removed 1.7 liters, it kept getting clogged up by the debrie in his lungs, and the week before that they got 3.8 liters.
The dr's said he needs to be on a low protein diet as well as low sodium. I have good control of the sodium ( 1000 mg a day or less) but I do not know how low of a protein he needs. I am hesitant to reduce the protein, I am trying to get all of the foods in him that I can, he has gone from an overwieght 238 down to his current weight of 142 since oct. This past week he lost 8 lbs and that was weight after the last thora and before this weeks procedure.
Does anyone have recommendations about a diet I can give him to help him gain weight while still restricting sodium and protein? Is it even possible? The ammonias build up quickly so I have to do something about reducing the protein.
Thanks in advance for your advice.
Therese

Hello Mishca and welcome to HealingWell. I am so sorry about your husband. It is really difficult to manage a diet when someone is that sick. May I suggest that you contact his Dr and ask for an appetite stimulant? Thay may Rx a medication called Megace which usually starts working fairly fast. Commonly people who are in end stage liver disease have no appetite and find it difficult to eat much so the Dr Rx's the meds to stimulate their appetite. This medication worked very well with my mother and she was able to gain a little much needed weight. Dansbrother is right, small meals offered on a frequent basis is a great idea.

Hello again Mischa, I really can relate to the anger. I am still angry at my husband for cheating us out of our life together. Being an alcoholic is one tough addiction to break. Mine stopped drinking when he had his first encephalopathy episode. It scared him straight and he stopped drinking. But the damage was already done and though he gave it one heck of a fight it was not to be.
Dansbrother he just reminded me . One of my husband's favorite food was KFC. He would always get a 3 piece but he'd have to save a piece or two for later. He's eyes were always larger than his stomach. Thanks for the memory.

Hi Mischa  We have just come home from the hospital and I wanted to catch up on my reading.  I can soooo relate to your story.  The minute chirhossis was even mention by the Dr.s' my husband put down his drink and never touched it again.  I just wanted to mention that his liver Dr. at Vanderbilt doesn't want me to cut my husband off of protein no matter how high his ammonia gets.  He talked to us a long time the last appt we had.  He said he has made it his mission to study nutrition.  Apparently very few Dr.s give nutrition any time.  He told us if his ammonia gets high to just give him more laclatose.  So far it has worked.  My husband has absolutely no muscle mass left at all!!!  He stared at about 235 and is down to 165 that is after they drain him.  Also I wanted to tell you Shelly you called it right.  Jerry had 2 pints of blood yesterday.  Everyone told us he would notice right away but so far he says he doesn't feel any better.  But he also has to turn around and go back today for his albumin and get drained.  I wanted to let you know that.  His appatite is pretty good but he does eat several small meals a day.  His latest craving is schrimp.  Which I encourage.  We are going to try and get a good recipe for home made cocktail sause.  If anyone out there knows one please send it.  The ones pre-made are so full of sodium.  Oh I forgot to welcome you Mischa.  This is a great site.  WE are all here to help.  Hang in there.  I am finding out its much easier to deal with this disease (if that is possible) if you have an idea whats coming.  Just keep reading.

JoAnn

Hi Carol.  I should own stock in those large packages of popsicles you get at Wal Mart!  My husband eats them constantly.  Also I make him smoothies!   I bought a can of Soy Protein at GNC and add that to his smoothies.  They taste so good to him because they have kept him in a dehydrated state since this all started.  He is so dried out that he can hardly talk good.  We started out buying the smoothies at Smoothie King but you almost have to take a loan out for those.  I think they are worse then Starbucks!  I really think the protein helps his energy level.  I'm concerned about his muscle loss.  He looks like one of those starving children you see on TV with the large belly!  I just can't immagine him getting that muscle mass back.  It is one of the things that scare me.  Tonight we are busy pushing his Hyrnia back in.  Every time he gets drained his hyrnia pops out and we have to push it back in.  Does anyone else have a problem with that.  Stay strong Carol your husband will really need you.  Oh we used to talk about the rocking chairs together.  Isn't that crazy.  I still plan on it.

JoAnn

Rainbeau I miss your posts.

Mischa and Carol

Hi and Welcome to you to you both. I am sure being a caregiver is one of the most difficult jobs, next to parenting. It is particularly hard to find things to eat that are healthy and still taste good, particularly since some of the medications I take seem to affect the way food tastes for me, things I used to love have little or no taste at all to me and I find myself craving things that I have never liked or would eat before. Can really relate to Shelly's memory of her moher. I also have found it is true that some doctors take nurtition and eatting habits moer into account than others. I have gotten mixed messages from my doctors when I have asked what, if anything I can do to remain healthy and slow down the progression of my disease. My hepatologist says "eat what you want" and my GI doc says "reduce red meats and those proteins along with sodium intake", I believe you have to do what you find works best for you and your husbands, balaning what they will eat with what is good for them. It is such an individual thing.

I wish you both luck and strength during this time and my heart and prayers go out to you both.

Lucy

Mischa  My husband had problems with dairy at first.  What is a truss.  My husband now wears a belly band.  The hernia is no longer painful.  It was really bad at first but now not too bad.  His belly button is the size of a coffee cup if you can immagine that.   Also with the smoothies.  I don't put milk products in the smoothie.  My daughter has tried to talk me into using unflavored yogart but he likes them with just fruit.  Go to Walmart AGAIN (that is my new home away from home besides the drug store).  They have different kinds of frozen fruit like Mango, strawberries, black berries, blue berries and pinapple.  Also I buy bananas and cut them up and freeze them.  We had to get a good blender at Sams that would crush the ice up good.  Then get a can of pretein at GNC.  I stared out with Wey protein then switched to Soy.  Because I was listening to too many Dr.s.  It is better to get the Soy protein.  Also use juice as a base.  I use orange juice but have recently tried apple and its a little sweeter.  Jerry's favorite is Mango and banana with orange juice base.  Just experiment with it.  I keep fresh fruit around for snack but now he needs calories so here we go again.  I also have a good jello snack that I used to make the kids when they were little and all of the grandkids love it.  Its called finger jello.  Jerry gets up in the middle of the night and snacks on it.  Let me know if you want the recipe.  Hang in there.  I'm feeling like a million dollars this morning with a good nights rest!!!  I think you are probably at the point where we were 6 months ago.  Being sleep deprived is horrible.  I feel for you.

JoAnn

I dont know if this is a symptom of the disease or not. For a while now, since my husband got sick, off and on it would seem like he would have an esophageal spasm when swallowing food, very seldom at first. here the last 2 weeks or so,it would happen more frequently, he would swallow a drink and it would go down the wrong way or he would take a bite of food and it would kind of like get stuck or just have a real hard time going down and be very painful at the same time, not overly large bite that are not well chewed, small bites well chewed. Usually it is the first few bites that this happens during. the last week everytime he eats this happens. He had an endoscopy a while back and there were no varicies and the dr said the throat looked fine. Any suggestions?
He had a very bad night last night with his stomach hurting and cramping and gas, but not as much gas a he usually has. He did not eat anything dairy, actually he only ate once yesterday, he had no appetite and flat out told me he will eat when he is ready to eat and no amount of cajouling or pushing food in front of him is going to change that so I need to just stop. yesterday he was in a very agitated state all day, then towards evening he became very down physically then the episode lastnight.
I have noticed a pattern here in the last 3 weeks. He goes in for his thora, feels great the next day. the following day he gets agitated easily and the following day he goes downhill for 2 or 3 days, he doesnt start to feel good again until the day before the next procedure. usually this is done on thursdays but one week we had to go on friday, thats when I really noticed the pattern so this week I was watching for it and it is staying true to the pattern. It seems as tho his ammonias spike or something. Oh and he did have churchs fried chicken yesterday, 3 pieces with mashed taters. Another thought just occured to me. holy cow a couple of days after his procedure, he eats a good meal, like procedure on thurs, not much appetite on friday, eats good saturday.... down saturday night until tues or wed when he will have diarrhea. Do you think that this rollercoaster could possibly be from him eating after barely touching food for a few days??usually his meals are strict diet the chicken was an unusual happening, anything to get food in him kind of thing.
sorry I am rambling, there is not a support group or structure around here, i have to manage this on my own, no friends or family to chip in and help except 1 couple who come up occasionally for the weekend every couple of months that my husband has been friends with since the were in elementary school. His friend also had a liver transplant in 2006 so knows what we are going thru, His wife is very easy to talk to but she told me straight up yesteday that to her, after waiting from 2001 to 2006 to get her husband transplanted and all the time she spent in the hospital ( hubby was in a coma for a month after an ammonia flare up and she stayed with him the whole time) she thought that my hubby was to sick to be a valid candidate for a transplant, she saw him barely 3 weeks ago and he has lost so much in that short time.
I have not given up hope and continue to do the very best I can to keep him healthy enough so that when we go for testing that he will be approved and go to the top of the list........ that is all that will help him at this point if we can get it soon enough.
Therese

Therese  Your husbands friend that had a liver transplant two years ago.  That was a long time in terms of medicine.  They know a lot more now.  Don't give up!  My husband was horrible 6 months ago about his eating and horrible gas and cramps and now its not so bad.  My husband has been down to 164 from 240 has no muscle mass at all and is very week.  He has been drained as much as three times in one week.  He has had the fluid around his lungs but it was like 8 months ago.  No more now since Vanderbilt took over.  Once they know if he is a canidate whether or not approved and the teaching hospital takes over they will up his dose of dieretics.  Maybe the fluid will get better.  Once he gets used to the lactalose the gas will get better and cramps.  Just make sure he has 3 to 4 BM a day.  Also the irritation could be high amonia which I have just recently discovered can be caused by infection, low blood and or dehydration!! There is still hope so just hang in there.

JoAnn

thanks for the info. My husband never did have much edemia and he has been having to have his lungs drained every week for the last 2 months when he first started having his stomach drained, the first time they took out 12- 2 liter bottles and after that it was always 8 2 liter bottles or more. Now there is nothing to drain from his stomach, it is all from his lungs. He has been on the meds and lactulosesince january so he is used to taking them, he had his endoscopy about 2 1/2 weeks ago.
We go next monday to start the testing, say prayers for us, 1 that he lives that long, 2 that they accept him for the list.
Therese

Hi joann
My husband stopped drinking back in sept last year, he has been clean for 6 months but he also went thru rehab and attended the AA classes