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Waiting For Transplant and getting scared

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Posted 7/29/2007 11:20 PM (GMT 0)
Hi all, I'm new to the forum. I was looking for information online about end stage liver disease and found this site it looks like it could be very helpful.

8 years ago my mom was diagnosed with NASH (nonalcoholicstepohepatitis) (sp).  Their was already cirrhosis present so she was immedietley put on the transplant list.  Her MELD score as of 3 weeks ago was 18, and we were told that she is now number one on the list in our region. I've done all the research I can on NASH so I know more then I ever thought I would, however, as I anxiously await the phone call and am watching my mom go progressively down hill I'm plagued with questions about end stage liver disease, and exactly what is happening to my mom as we wait.

I just don't know what is normal for the progression, and what might be signs of other problems that need to be addressed.  Recently she has had severe (lasting days at a time) diarrhea. Is that part of the progression of the disease? If so what do we do to treat it? We're not sure about over the counter drugs like Immodium or Pepto-Bismol and our local liver specialist isn't much  help.

In the last month and a half we've had her in for 4 pericentesis to remove fluid from her abdomen each one taking about 3 liters off. We've also had her in for one thorocentesis where they took just over a liter off her left lung.  Doctors won't say one way or another if this is a really bad thing, or how soon we need to find a liver before our worse fears are realized. I recently found out I am a blood type match, but mom doesn't want me to go any further with the tissue typing and cross matching, because she is afraid for my safety, but I'm not ready to loose my mom, and would be willing to do anything to save her.

Any advice on any of my questions would be greatly appreciated.


Thanks

 

Posted 7/30/2007 5:15 AM (GMT 0)
Hello Prayingformom, welcome to healingwell. This is a great forum for end stage liver disease. There's lot's of caretakers as well as people that are suffering with it. It great that your mom is number 1 on the list, hopefully it won't be long before she gets the call.
Is your mom on lactolose? If so,that could be the cause of her diarrhea. Doctors prescribe it alot for keeping down ammonia levels. If she is taking it the doctors may want to adjust it down a bit if she's going to often. My husband's doctor didn't want him going more than 3-4 times a day. So they were constantly adjusting it.
My husband had hep C and alcoholic cirrohsis. My husbands symtoms started with encephalothopy. Where they get confused and really don't know what they are doing. That's where the lactolose comes in to keep the ammonia levels down. When they go alot though they get low on vital minerals and vitamins so his doctors had him taking alot of dietary supplements. He developed liver cancer about a year after his first encephalothopy epizode. He started having seizures about six months later. Then about 6 months later he had a minor stroke. He never had a problem with fluid retention that required a pericentesis though. Now everyone is different and just because my husband progressed that way doesn't mean you mom will. She has a different primary disease then my husband had also. Google end stage liver disease. There is alot of good information to be had online. Hang in there. My thoughts and prayers will be with your mom and you. Pink Grandma
Posted 7/30/2007 7:03 PM (GMT 0)
Thank you for the advice Pink Grandma.  Mom isn't on lactolose so far since the aumonia levels haven't gone up too high yet.  However, she is taking 80 mg lasix and 40 mg spirlactone, with almost no relief of the ascites. We are taking her in every week and a half because she fills up with fluid so much that she can't hardly breath. Her appetite is nothing, and what she does eat goes right through her, with almost no "digestion" taking place.  This past week I started noticing a funny smell coming from her. It's kind of sweet and musty smelling at the same time, and just seems  to permiate off of her. Is that part of liver disease?

I am sorry to hear about your husband.  It is rough on those of us that are caregivers, and feel powerless to help. The not knowing what to expect is the hardest part for me. I'm a details person that wants to know whats coming up all the time, so I can handel it instead of having to react on the fly.

Thank you for your advice and encouragment.

 

Posted 7/30/2007 10:13 PM (GMT 0)
You really should inquire further into the living donor matter you mentioned. They would take half your liver and transplant it into your mother. It has been done many times and, while there is some risk, I understand it is low. Your liver would regenerate to full size again. They told me at the local transplant facility that your mother's medical insurance would pay for all of your treatment and surgery.

I have asked about it myself, but since my current MELD score is 11, my hepatologist does not want to do it. I guess I would have to get a lot sicker first.

Doug
Posted 8/2/2007 3:55 PM (GMT 0)
"This past week I started noticing a funny smell coming from her. It's kind of sweet and musty smelling at the same time, and just seems  to permiate off of her. Is that part of liver disease?"

To be perfectly honest, I have noticed the odor you describe on people who are dying.  Your mom seems to be very ill.  I agree that you should push her on the living donor issue.  The risk to you is minimal, and your liver would regenerate within 2-3 weeks (this was told to me by a Mayo surgeon.)  I am personally living with half a liver, as the rt. lobe was completely removed in May due to cancer.

It would seem that time is running out for your mom, and something must be done quickly.

Please keep posting.

Connie

 

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