No, he's retired military/civil service; he couldn't work now anyway. He's lost probably 30 actual pounds but more than that because he has at least 20 pounds of extra fluid. No, he's not getting stronger, and at this point he's not going to until he gets a transplant. Unfortunately, for most people, once they start developing these kinds of symptoms, there is no other cure. Has your husband stopped drinking and how long ago? Most transplant centers require 6 months sobriety and many require documented AA involvement.
Liver disease seems to cause people to lose their appetite, even aside from the discomfort of the ascites. My husband eats VERY little and he used to LOVE food. Now eating is a chore for him; he says nothing tastes good.
The best thing to do now is make sure he has a good hepatologist and that he quits drinking, if he already hasn't.
Hello to All the new ones here and welcome to HW. I do know what you are all going through!!! My husband is post liver transplant, March 16th, 2007. My husband had refactory ascites, he had several paracentesis, they were taking any where from 10-15 liters off of him weekly, they then did a TIPS, which helped some. He had several bouts of encephalopathy, with comas on a few occasions. He had the appetite loss, weight and muscle loss. He drank high protein Boost for the needed calories and also the protein. The doctor ordered this, because the albumin was low, which means the vessels can't hold the fluid in. It is a nutritional issue!! The protein in boost is easier to digest than the meat proteins and not as toxic. If your husband is having forgetful episodes or confusion at times, I would suggest he not stop taking the lactulose. I do understand the sides to the lactulose all to well, but it has saved my husbands life on quite a few occasions! I would suggest you have your husband evaluated for a transplant, while abstaining from drinking definetly does help the liver heal, cirrhosis can be a very progressive disease and with the ascites the survival outcome is not that promising, some do stabilize, others do not. Better safe than sorry! Itching is a issue in ESLD because the bilirubins are higher. I believe there is something that can be given for that, questran I think not sure about the spelling. My husband was not able to work, he got disability first try. If I can be of anyhelp let me know, I have been through all of this with my husband. I thank the Lord everyday for his Precious gift of life!
Hi Bobby, My husband was a heavy drinker for several years, he use intravenous drugs back in the 70's. He went into a coma for 3 weeks in 2001, he recovered after that and was living a very normal life until the summer of 2005 (fluid build up and muscle cramps). He was not drinking heavily for quite a few years, he had a couple of beers went he went deer hunting. That was all it took, in November- December 2005 he crashed all at once, the ascites became unbearable, muscle cramps, forgetfulness, confusion, diabetes, lose of muscle mass. The only thing he didn't have going was bleeding varices, varices were minimal, no banding. He came so close to dying it wasn't funny. A local GI doctor just about did him in, he doubled his aldactone to 200mg without checking his labs, he ended up in E.R. with a potassium level of 7.8. I stood very firm and demanded he be sent to a transplant clinic, they transfered him via ambulance to a clinic in Memphis, (another long story). The clinic got him stabilized, and started working him up for transplant in the hospital, unbelievable but his MELD was just 11, the surgeon said he had only 20% liver function at that time. When we got home, about a month later the transplant clinic in Little Rock sent a appointment scheduled with the GI clinic, I called them and they took us in right away, finished working him up for a transplant. Mark had been going to A.A. when he could, he was not able to drive and had so much trouble just walking. We got him through that part and he was accepted for a liver transplant in June, 2006. He was hospitalized over 17 times in about a years time. He went into so many acute encephalopathy episodes, I thought I was going to go crazy. Thats not even counting the weekly visits he had for paracentesis 10-15 liters each time. They finally tried doing a TIPS it helped a little. Then after the TIPS he started having heart problems, mild heart attack, mitral valvle prolapse, and atrial fibrillation. He was listed inactive for about a month, in Feb. to the begining of March. The surgeon called us in for a appointment, listed him active and told us he would get a new liver in March, he was listed around 10 days and we finally got the call, it has been such a blessing, he is doing just wonderful, we have our life back!
I will tell you this site has been very supportive, and I thank God for bringing me here! ESLD can be such a isolating disease, without the support I got here I would have probaly gone off the deep end!
The best advice I can give anyone is to follow the doctors orders, make sure you have a good hepatologist. If appetite is poor, check with your doctor about nutritional supplements. It will help slow down weight loss and muscle loss, and even help with ascites. Mark absolutely hated the lactulose, what he hated more was waking up in the hospital and had no idea what had happened to him. This is why I say not to skip doses of lactulose. It got to where Mark just took it without reminders. If the encephalopathy continues, there is always a possibly of infection, electrolyte imbalance, be persistant about finding the reason for it, ammonia build-up is not always why it happens. Inverted sleep patterns and fatigue is a common problem with ESLD, talk with your doctor about it. Mark was allowed to take Benedryl for it. Something we got tired of hearing during our wait for the Precious gift was, YOUR NOT SICK ENOUGH YET. This was so frustrating for us, considering he was hospitalized every month and sometimes twice a month. Just keep faith and know the Lord does provide when it is time.
With SSD/SSI, if you are listed for a transplant or in the process, you usually get it first try. Encephalopathy also helps you get it. Fatigue also works in your favor. Ascites with paracentesis also helps. What it comes down to is what the doctors have written in your chart. I think the main thing SSD looked at with Mark was the diagnosis and his predicted outcome, his quality of life. If I were you I would get started on it right away, before your year with disability insurance runs out. Good Luck with it, just keep positive thoughts about it
I hope I have helped you, if you have any other questions please feel free to ask. Keep coming back, we are here for you!!!