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.