My dad...update, advice or suggestions..please. x

Hi

I posted over s few weeks ago asking for any info about ens stage liver disease....my dad has been to the hopsital every week for blood tests and to have the fluid in his abdomen drained. The problem is that his blood isnt clotting and they were quite reluctant to use needles etc..

He was put on very high doses of diuretics 3 weeks ago and this seems to have done the trick, although he has lost 22 kilos and the doctor says he still needs to lose 10 more....He looks so thin and his clothes are hanging off him...he hasnt been given any other medication. The doctor said that by Dec (6 months alcohol free) if there is to be any improvement it will start to show then. At the moment there has been no significant improvement in his blood tests.

His appetite has slowly come back but he cannot have any salt in his diet.

The doctor told my dad that in Dec he will discuss life expectancy and it is very doubtful that he will be put on the transplant list. He said my dad was anaemic but hasnt given any iron tablets....is this normal??

he too gets irritiable and is suffering form cramps (due to the diuretics)...but i cannot get over the way he looks do frail..compared to how he used to look...

Anybody got any suggestions, or been in a similar situation???

thanks MJ

MJ

The symptoms you describe are quite the same for End Stage Liver Disease.

My Mike had all the same a year ago this time...and stopped drinking late September 2010. When he was alcohol free for about 4 months, they started his transplant evaluationa and he got his transplant about 1 day after a full 6 months of sobriety! He didn't have much time left on his clock by then!!!

Losing weight is quite typical, as is losing muscle mass. I've seen photos of many of the patients and that is pretty much IT. Since transplant, Mike has begun to eat normally and put on some weight, but he'd like to keep his weight at a healty weight for his hight...not overweight at all.

When his weight is up a few pounds it usually means he has fluid in his ankles again and starts on the diuretics for a while.

Before his transplant they made sure he took a potassium sparing diuretic...spirolactone in addition to the lasix, to keep the cramps under control He still had terrible cramps but they were not from low potassium, rather quite typical of those wiht liver disease. He has not had ANY cramps since the day of his transplant, May 1, 2011.

Before transplant he almost LIVED on ensure and protien bars and fruit. He hated meat and I was hard pressed to get any protein in him...Though I tried scrambled eggs and chicken.

The docs may take him more seriously as a candiate for transplant if he does well with his alcohol cessation. Mike had a blood draw weekly, attended AA 4-6 times a week and had one of the leaders sign his calendar. He also met with a psychiatrist who deemed him sane and considered his committement to sobriety very good. The psychiatrist wrote a letter to the transplant coodinator so stating.

They WANT their transplant candidates to have a successful outcome and will NOT accepts folks into the program who have underlying health problems that suggest a poor outcome. They check for cardiac health and kidney health. Other cancers, though they transplant when a person has liver cancer if tumor(s) are small in size...My Mike had one 2 cm. Connie's tumor is larger, but less than 5cm.

If you go back and read my posts "MamaLama" or "David" you will read about bumps along the way, but successful outcomes for sure!

This is not an easy path. And they call it End Stage for a reason. Some have turned their lives around and lived clean, sober, with healthy diets for a long time. Then the bad part can come on quickly.

I hope his mental status is good. If not their are meds for that....lactulose and xifaxan.

Keep us posted on his progress.

Hugs,
Carol

 Thanks for your help and replies.

Emma, i will check out the info....any info at the moment is good....its so difficult with the doctors not really saying much.

Carol, i am so pleased that it worked for you and your partner..My dad has been alcohol free for 5 months and at the moment there has been no significant improvement in his blood results.

Connie, the doctors said that beforee he lost the fluid his muscle mass had already started to decrease but because of the fluid retention, it wasnt noticable. Obviously now he has lost the fluid the true extent of the muscle loss is evident. Even so, the doctor still thinks he needs to lose 10 kilos...not pounds....which sounds a bit extreme. His appetite has improved slightly and we are watching everything that he eats to avoid the salt etc...

Thanks for all your support and advice...it really makes a difference talking to people who are going through, living with and have dealt with this condition.

MJ x