Hi all, I am new here and could really use some info and support please.

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coppergirlkaren
New Member


Date Joined May 2006
Total Posts : 7
   Posted 5/26/2006 10:48 PM (GMT -7)   
Hi,
My name is Karen.  I am 40 yrs old and my sister Val is 43.  She has had hepatitis for about 20 yrs, with relatively no problems. It has progressed into cirrosis.  about 3 weeks ago, I noticed her eyes were kind of yellow looking, so I took her to the hospital.  Her bilirubin count at that time was 102.  She was in the hospital for 2 1/2 weeks and here count now is approx 237.  We have an appt on tuesday with the transplant docs.  So I guess my questions are as follows.  Does anyone know how bad of a stage we are at?  Is there a site I can go to that lists specifics on whether I would qualify as a live donor?  I am at a loss here, I don't really know what is going to happen and needless to say, am very worried.  Val is home now from the hospital, but needs to rest just after she walks to the bathroom.  She has absolutely no energy.  I am not even sure she should be at home.  Any info, advise, hope that you all could share would be greatly appreciated.  It took me about an hour and ahalf just to find this site.  I am already greatful you are all here.  Prayers out to all who need them.  God bless.
Karen

Enjoy Life Today, It Is Not A Dress Rehearsal!!!


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 5/27/2006 7:05 AM (GMT -7)   
Hi Karen,
 
You found the RIGHT sight for yourself and your sister. Sorry you need us be we will be there for you.
 
That is very loving that you would ocnsider being a liver donor for your sister. Unfortunately, that does not work for adults. (babies can be given a portion of a liver) The donor will have to be from a person on life support who is an organ donor.
 
We have several members here who have loved ones on the list or being listed for organ transplants and they will be able to give you more information on the process.
 
Where is your sister being treated and I assume she is under the care of a hepatologist?
 
It is very scary to watch end stage liver disease as things can change very quickly. But the liver can also stabalize after a crisis. I hope you or another family member or spouse are there to watch your sister and seek medical attention if needed.
 
There are excellent resources on this site for end stage liver disease. Read them if you haven't already done so. Become familiar with indicators of encephalopathy or complications that need to be monitored closely.
 
I am caregiver for my husband, Gene who has cirrhosis and esophageal cancer. He is not a transplalnt candidate due to his cancer diagnosis and age. But he has amazed the doctors by surviving and is nicknamed Miracle Boy.
 
You are in my thoughts and prayers,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


coppergirlkaren
New Member


Date Joined May 2006
Total Posts : 7
   Posted 5/27/2006 7:58 AM (GMT -7)   

(((Barb))))

You and Gene are in my prayers too.  We live in Canada, and the transplant surgeon we saw in January, said he has done 150 transplants from adult to adult.  With 100% success rate after 1yr and I think he said 97& after 5 yrs.  All of the info I have read so far supports live adult to adult transpantation.  Using (depending on the size and need) approx 1/2 of the liver.  The live donors live can grow back in a short period of time and the recipient's 1/2 will grow to full function, pretty much as well.  So I am holding out hope for that.  Like I said we will know more on Tuesday, I will keep you all posted.  In Jan doc had said I may be too heavy (he was very diplomatic, he made me laugh), So I started excersising and eating better, I have lost 20lbs, We had just though we had more time :( 

I think the worst part now is just waiting until tuesday argh!  I have a tendandcy to want what I want and I want it now.  Learning to get better at that.  I know that what happens with my sis will be God's will not mine, so I pray for acceptance of His will.  But having said that, I/we gotta do the footwork.

Thanks again Barb, I look forward to hearing more from you and others.

Karen

 


Enjoy Life Today, It Is Not A Dress Rehearsal!!!


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 5/27/2006 1:56 PM (GMT -7)   
Hi Karen,

Well, I learned something I didn't know before. Thanks for the explanation.

I also believe it is all in Gods hands. Let us know what you find out on Tuesday.

Your sister is very fortunate to have you.

Hugs,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 5/28/2006 1:59 AM (GMT -7)   
Good luck Karen. Your sister is indeed fortunate to have you. Keep us posted on her situation. I hope you get good news next week.
Marg
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/28/2006 3:48 PM (GMT -7)   
Welcome to the forum, Karen. We had a Val here from Canada with cirrhosis, but haven't heard from her the past few weeks. Could she be your sister? In any event, I applaud you for wanting to be a living donor and wish you both the best.

Marg, at one time they were only doing infant and young children living donor transplants, but in recent years have started doing adult to adult living donor transplants. As mentioned, the donor's liver grows back completely in 2-3 weeks, while the recipient's takes a bit longer. I have a willing donor, but don't qualify for transplant due to metastasis of my tumor to the inferior vena cava. Also, my liver function is still fairly good.

Hugs,
Connie

coppergirlkaren
New Member


Date Joined May 2006
Total Posts : 7
   Posted 5/28/2006 7:38 PM (GMT -7)   
Hi Marg and Connie.
Thanks for the msgs, The Val on the forum could have been my sis. Not sure. I have sent her the site info in hopes that she will join. I always figure there is strength in numbers ya know? Tuesday is getting closer, will be very glad to get there and get some acurate information. Val has been feeling a bit better yesterday and today. She was actually able to get dressed and do a bit of laundry. This is definately a scary situation.
Have agreat nite all.
Luv Karen
Enjoy Life Today, It Is Not A Dress Rehearsal!!!

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