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Husband waiting on liver

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Posted 11/10/2008 8:56 PM (GMT 0)
Hi Everyone,
This is my first time writing a new topic. My husband has Auto Immune Hepatitis and was diagnosed in 2004. A perfectly healthy then 26 year old man. He got pnemonia symptoms one day and we went to the ER. They did all these tests and find out that he had hepatitis.

Fast Forward to today,
My husband is going on week 2 of being in the hospital with a ESLD He was immediately approved and put on the list for a transplant because his score shot up from 25 too 32. He is very encelthepathic (sp?), tired and weak. He has major fluid in his legs and stomach. They will not give him any diuretics because they want to protect his kidneys. Before I left this morning from the hospital the transplant team said that his kidneys cratinine (sp)? went above 2.0 and that he may need dialiysis (sp?) They give him lactulose and he has a feeding tube because he said it hurt to eat by mouth. The doctors say he is at the top of the list in his blood group. So we are waiting....
I dont like the confusion and moodiness. Im taking care of the entire household and him at the hospital. It is rough, but I try not to complain. I just want my husband back.
Posted 11/10/2008 10:14 PM (GMT 0)

Hi Trinky

I am so sorry to hear about your husband but hopefully he will get his new liver soon yeah . My husband also has ESLD but he is not high enough on the list for transplant so I know what you mean when you say you want him back!  Take care of yourself and best wishes,

 

 

Judith

Posted 11/10/2008 10:25 PM (GMT 0)
Thanks Judith. I am hanging in there. I'm really holding on to my faith. I feel that is the only thing holding me up right now.
Posted 11/11/2008 12:15 AM (GMT 0)

I just wanted to welcome you to the forum, Trinky.  You will find a lot of support here.  At least your husband is high on the transplant list, so hopefully he will get a liver soon and be feeling and doing better when that happens.

We have a medical word/terms spelling thread, in case you'd like to check that out.  I just bumped it to the top.

Posted 11/11/2008 1:14 AM (GMT 0)
Hello Trinky and welcome to HealingWell. My heart goes out to you and your family. Trying to juggle everything must be exhausting for you, not to mention the stress that you must be under. But, it is good news news that he is at the top of the list. Hopefully the wait will not be too long.

I going to tell you what I tell all the caregivers.......take a few minutes for your self everyday.......As I say... you are not the energizer bunny and you need to recharge your batteries when ever you can. I know it's hard to find the time, but for your own health you need to find the time. Read a few chapters in a book, take a bubble bath, take a walk. What ever can take your mind off of things just for a few minutes a day.... that makes you feel better.

Thoughts and prayers........
Posted 11/11/2008 2:01 AM (GMT 0)
Welcome to the forum Trinky, My heart goes out to you also. I will be praying that your husband receives his transplant soon. While my husband hasn't been sick enough to be listed, I do know how it feels to want him back.

Take Care!
Posted 11/11/2008 3:02 AM (GMT 0)
Hello, Trinky and welcome to the forum! I will pray that your husband gets his liver VERY soon!! My husband has HepC and cirrhosis of the liver, and he is currently on the transplant list, although his MELD is only 8. I know how you feel. I work full time, care for him and take care of our child and there are days when I feel there is nothing left of me. But, too my my Faith is what keeps me going. You keep your chin up, pray every day and take a deep breath. You hang in there, and keep us updated!
Posted 11/11/2008 2:32 PM (GMT 0)
Trinky

Hi and welcome to the forum. I too have autoimmune hepatitis and am so sorry that your husband and your family are having to deal with this horrid and unpredicatable disease. I will keep you and your family in my prayers that he will recieve his transplant soon. I know this has to be so difficult for you having to deal with it all. Please take time for youself when you can spare it and keep your chin up.

Lucy
Posted 11/11/2008 7:10 PM (GMT 0)
Thanks everybody for the encouragement. I was feeling down today because they are going to put him on dialysis starting tomorrow. He has so much fluid in him. My baby looks like he has tree trunks for legs. His creatinine levels were very high. So they said that was an indicator of the kidney function. He gets an attitude when he has to take lactualose. I tell him just to chalk it up and take it. It's not that bad. He got an attitude with me this morning because he couldnt wake me from my sleep to take him to the bathroom. I was beat and I am surviving off of almost 4 hours of sleep a night. Is the attitude normal?
Posted 11/11/2008 7:54 PM (GMT 0)

Yes, the attitude is very normal for someone with encephalopathy, which he obviously has if he's taking Lactulose.  I've never heard of anybody who does like Lactulose.  You can try putting it in a drink that he likes, to help mask the taste of the Lactulose.  It's very important that he take it.

Creatinine is an indicator of kidney function.  Doctors are not quick to put someone on dialysis, even temporarily, so if they are doing so it is because he really needs it.

Try to sneak in some time for yourself, even if it's just a short walk or a bubble bath.  It's important to remember to take care of YOU!

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