New to this and frustrated...Part 2

looking for suggestions ! Marks liver Dr just ordered him to go on a vegetarian diet with occasional fish.
And Mark wont eat any veggies,fruit or pasta now ! His diet consists of 2 pop tarts for BK,Cheeseburger and vanilla shake for lunch,and cheeseburger and juice for supper,for a nighttime snack he will eat either a bowl of cereal or vanilla pudding ! He used to love all different kinds of foods and loved to cook them to ! I just dont have a clue what to feed him now,and on top of that its no wonder we have no control over his diabetes.All this is to try and get his ammonia level down,it just keeps going up.

Those burgers are a no no!! It is very hard for the liver to process red meat . . . not to mention the sodium in fast food. Prior to transplant, we ate alot of fish, grilled, broiled and occasionally fried. We also ate alot of shrimp, and there are alot of ways to prepare it. We also ate alot of chicken breast, and pork loin . . all white meat. Snacks were always fruit, pudding, jello. Frozen mixed fruit is good for dehydration and to put in shakes, and just as a snack. Cereal and oatmeal are wonderful, just make sure you check the sodium content on the cereal . . some are really high where others are not. Boost nutritional drinks are a good source of nutrition, but check with his Dr. to make sure he agrees.

Good luck

Debbie

He did say no meat at this time only fish on occasion,He did eat a tablespoon of mashed potatoes and green beans tonight with a glass of apple juice,everything he used to love he just doesnt want anymore ! He loves shakes and I think you can make a shake out of ice cream and the carnation instant breakfast ? I will have to try that ! He slept from 9pm last night till 6 pm tonight with only getting up to eat something ,use bathroom and right back to bed ! And he is ready to go back to bed now ! Is that to much sleep or should I let him be as long as I can wake him up or he wakes up to eat and use bathroom ? Thanks for all of your help !

NEH, yes, you can make a shake with Carnation Instant Breakfast (now named Breakfast Essentials.) When I had no appetite for solid food, I was told by my transplant coordinator to use that as a meal replacement. It has all the nutrients you need. I make it with soy milk. The reason I suggested soy or almond milk is because they are plant based. I actually like those better than cow's milk.

Regarding sleep, as long as he is getting up to eat and go to the bathroom, I'd let him sleep. You might try to interest him in a TV program or some conversation to encourage more awake time. I know I could sleep 20 out of 24 hours if I let myself, but I set the alarm and get up. I often have to take a late afternoon nap, especially if I have to get up extra early for an appt. The fatigue and sleepiness are just overwhelming. Mine is from hep C, but any sort of liver disease that is fairly well advanced is going to cause this. When I have to spend a day at Mayo for tests and consults, I will need to sleep most of the following day.

Hugs,
Connie

Connie,Mark has both Cirrhosis and Hep C,double whammy I call it ! I called his Liver Dr tonight because I am really getting worried about Mark,he just seems to be going downhill so fast ! I know he is not nearly as bad as alot of people on here or family members,but bad enough that I'm scared ! I am getting confused still too.Marks last AST and ALT were so much better,family Dr says that is a good thing,making me think "hes going to get better" Liver Dr said numbers dont always mean a thing that you have to go by symptoms more. So now I am really confused as to what to think,hes having more blood work tomorrow morning.I have always told the Drs to be honest with me but sometimes honesty really hurts.He told me right out that Mark is bad ,only going to get worse and nothing they can do except try and treat symptoms. I hate this so much,just wish it never got this far !

NEH, with cirrhosis and hep C, Mark will only get worse without hep C treatment or a transplant. Those two diagnoses also make him a prime candidate for liver cancer. I agree with the hep doc--the blood work doesn't mean as much as symptoms and how he is looking and feeling. Also the results of scans. I had cirrhosis, hep C, AND liver cancer (twice) --a triple whammy--and my numbers were never triple normal...mostly about double normal.

Primary care docs know almost nothing about liver disease. I wouldn't rely on anything he says.

Hugs,
Connie

I too had no appetite and still almost have to force myself to eat some days. I got a nifty little blender on kitchen counter and put in fresh or frozen fruit, a little chopped ice, frozen yogurt or Greek yogurt (this has protein so you'd have to see if he is protein restricted), and maybe some soy milk or juice or whatever to thin it some. Comes out like a $5.00 smoothie and goes down easy and it's n easy way to get the fruit eaten. You don't have to mention to him about the yogurt if he is like my husband....anyway, pour drink in tall glass, immediately rinse blender, lid and blade, and you are set for next time. I put leftovers in containers in freezer. Angie 1953's idea about muffins is great, zucchini bread or carrot muffins are wonderful and again, you don't have to advertise what's in them if he is fussy!

nehelp,
I really understand what you are saying. We have had to kind of figure out what works best for us, by adjusting the food, meds, sleep time, etc. I have had to cut back hubby's meds by 1/2 (except pain meds) since he is out of nursing home (with Dr. OK) and he seems to be doing better. Although our Dr. is very nice and helpful, seems to me like because there is little he can do now that hubby is End Stage, except make him "happy and comfortable", according to Doc.
The sleeping for long periods really bothered me too, but after several days of 18-20 hours of sleeping, hubby feels better and can stay alert longer. (Personally ...for us, when hubby is really "out of it", we need to cut back on his meds....or more lactalose because he hasn't pooped for awhile.) But... I know that everyone is different.
Prior to crashing a year and 1/2 ago, my hubby was taking meds for HBpressure and diabetes and after he lost 30 pounds, and was still getting those meds, plus additional meds for liver failure, he kept getting weaker and weaker, and finally we took him off HBP and diabetes meds, and he started doing better. After monitoring HBP and diabetes, I asked Doc if he could do without them and Doc determined he did not need them anymore (I think losing the 30 lbs helped.) But....it would have been easy to not recognize that he was too medicated. Wish I had some practical advise for you, but all I can tell you is what has worked for us.
I am going to talk to the Doc about cutting back his pain patch strength, as hubby thinks it's too strong for him. All we can do is try it and see what happens.
We don't have the added complication of gall stones. Am very sympathic of what you are going through. I had to make my hubby get up to eat meals, he wanted to eat them in bed, then he just didnt' ever get up. I put on music and had "some kind of treat" for him where ever he got to the table for a meal. He is motivated by a "treat"...which I'm sure comes from all the animal training he's done. :) Dr. told me that once he is UP and about, the BMs will be easier to do. Hope some of this is helpful.

One of the things I learned is that I have a better idea of what is going on with him, than the nursing home staff....as they aren't with him every hour of every day, and they don't know him like I do.
Angie1953

Angie,
Make sure your husband is well hydrated, as it will make it easier for your husband to have bowel movements. When you're taking lactulose, you can easily become dehydrated from the BMs. I had to go to the hospital once for an IV from not drinking enough fluids. With lactulose, I had diarrhea for the better part of 4 years.

We also found that giving anti-depressants at night works best, as they make hubby sleepy. If he gets them in the morning, he sleeps all day and roams the house at night. All the meds that make him sleepy, I ask Doc, if I can give them at night. At the NH they gave them to him in the morning (8:00 AM) and he slept most of the day...and roamed the halls at night. Then they wondered why his days and nights were mixed up!
Angie1953

NEH, whenever there is blood and you are tending Mark's wound, you should wear gloves...either the heavy ones or the thin ones used in hospitals...due to his hep C status.

Hugs,
Connie

It's important to have safety rails in the bath area...the kind that screw in and are not dependent on suction cups.

Hugs,
Connie