my mom has ESLD, looking for help and support and a roadmap!

Half b

The enseph. is the worst thing I have ever experienced.  It was truly a heartbreak, my mom was completely living on her own - traveling, going to bingo, then it hit the first time and mom never really came back the whole way.  Either mentally, she was with us or physically, but not both.  She hates the lacktulose  - hopefully that is behind us now - but she never got paranoid.  She did get a touch of the sundowners, but we would make her go outside in the wheelchair and it helped a bit.  I am sorry that she was delisted at 70 - my mom is 74.  I can tell you she did not want anyone but my siblings and spouses, but her brothers and sisters became insistant upon seeing her and we finally let them.  It is a hard road.  I wish you all the best.

Well, we got to go home last Fri.  So excited because we had only been in the hotel a week. And in the hopital for 10 days.  Jerry was doing really good.  It felt so good to sleep in our own bed.  BUT Sat everything changed.  He had started some swelling before we went home but it didn't seem that bad.  The trip home was only 3 hrs so I thought he would be OK.  Sat he started running a feverr. By Sat evening his legs looked like they were going to Pop!!!  Also they were very sore to the touch.  His fever hoovered around 100 but he also has some tylenol in his pain meds so I was concerned the fever could be much higher.  The Dr. at Vanderbilt did not want me to risk driving him back to Vanderbilt (3 hrs) until he was seen by a Dr.  When he mentioned ER all I could think about was all those sick people waiting to be seen coughing and sneezing.  We decided to go to Univ of Tn medical center.  They do some transplants there but not liver.  Thank godnn they took him in a room by himself and with its own bathroom.   The ER Dr stayed in touch with Vandy surgeon.  Jerry needed two units of blood.  His poor legs hurt so bad I couldn't even touch them.  In between the two units they gave him lasix.  Then Transported him back to Vanderbilt in an ambulance. 

According to the ER Dr. his liver function test were almost perfect.  That helped me relax.  We both decided that as long as the liver is OK we are OK.  The other symptoms just happen.  They are not terminal so we can go with the flow.  But they needed to get a handle on the swelling.  Also I've decided I'm married to the Predisone Man.  That medicine is crazy.  I know its necessary so I try to keep that in mind as my husband is eating everything in site!  I had to go home while he was getting his blood and pack a small ice chest so he had food in the ambulance on the way to Vandy.  Also he managed to talk the Ambulance driver into making a potty stop.  As he walked through the convient store in his hospital gown holding the back closed what he really wanted was to buy more food.  I really laughed when I heard that.  I'm so glad I wasn't with him.  I informed him yesterday I will not take him out in public until he is NOT taking the predisone!!!  He also has insomnia.  I think he sleeps maybe 2 hrs a night.  He is now out of the hospital and we have moved back to the hotel.  They did blood work this morning and we see the Dr. in clinic tomorrow morning.  I'm still concerned about his legs.  Even though a lot of the swelling is down they are still very red and sore.  We will see what the Dr. says tomorrow.  I just want to forworn you all that are just getting the transplants.  Be ready for the prednisone!!!  I'm trying really hard to let it run off my back but when I am sleep deprived it makes it harder.  So we also try and laugh some.  Hope every one is good.  I will keep in Touch.

JoAnn