“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."
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.
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.
Rainbeau I miss your posts.
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.
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.
Therese How long did you say it has been since your husband has quit drinking? I think most transplant hospitals require no drinking for 3 months and there are a few that want 6 months. Jerry has had to attend counseling since last Oct and AA. At one point they turned him down for the list because he hadn't attended AA and they thought he should which they didn't tell us until they turned him down. Crazy. When he started going to AA he was vomiting all the time. It was horrible but since he's on this new antibiotic he has not vomited at all! Don't worry your husband will make it! As Pink Grandma will say just charge those batteries and keep going.