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12/19/2011 09:18 PM

pre transplant

allaboutlife
 
Posts: 215
Member

I have had good labs but have HE, elevated ast & alt,severe fatigue, freaquent falls, nausea. The HE is getting bad. The last time I visited my hep dr he said he would refer me for a transplant but with my labs I would not qualify now. Should I ask about getting on the list and do the pre transplant stuff???
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12/20/2011 04:15 AM
dmanflan
dmanflan  
Posts: 1734
Group Leader
I'm an Advocate

It is always good to try to get listed for transplant, BUT, if your doc says the labs are still too good you probably won't qualify. Besides, good labs are good news! I would be trying to get the HE under control and pushing HARD to find the right level of lactulose and rifaximin to control it better. The HE is probably contributing/causing your falls as well.

12/20/2011 07:38 AM
allaboutlife
 
Posts: 215
Member

One of my problems is the rifaximin. I get the samples from my GI. I have them sometimes and I am so much better but when I don't I am not so good. I know you are right. Guess Im just tired of all this and want my life back. When I was working I always felt so thankful for my life after taking care of the critically ill. I need to remember all the people on here and in my life that would trade places with me in a second. I am sorry if I sounded selfish. I read this site every day. I love you guys like family.

12/20/2011 08:18 AM
1polarbear
1polarbear  
Posts: 619
Member

I get mine free from the pharmaceutical company. I was getting samples too and the GI nurse filled out a form and sent it to the company. You can check them out online. Try googling Xifaxan550 or Salix products. They give help to those who need it for the med.

And don't worry about complaining! Everyone has their own problems which are very significant to each person. If it is happening to us then it is of utmost importance, no matter what others are going through. I don't mean to sound harsh but each of us deals with our own things and we support all.


12/20/2011 04:23 PM
allaboutlife
 
Posts: 215
Member

Thanks Robyn

12/20/2011 06:42 PM
iwiham1027
iwiham1027  
Posts: 940
Member

Allaboutlife, I complain all the time LOL I guess it makes me feel some better to know some of my symptoms are not in my head like some of the doctors make you feel. I would also like my life back in a heart beat too. I don't think you are being selfish at all. Smile I think its quite normal. With high AST & ALT and your doctor telling you he will refer you for transplant I don't understand why he has not done it. My hepa told me too when I get HE or varicies I would also be refered as well. So whats up with that? I also read where people's labs are just fine but they are in liver failure or close to it? I don't get it. Its seems to me lots of doctors here are just lip service if you ask me, can you tell I am not real happy about doctors too many bad experiences. Hope you feel better soon wishing you the best. Cheryl

12/21/2011 07:40 AM
1polarbear
1polarbear  
Posts: 619
Member

My labs aren't that bad but I've already progressed to stage 3/4 cirrhosis, go figure. I have the HE and ascitis, no varicies yet. I hate to complain but sometimes I just need to too. I'm making the best of this new road less traveled but sure would like to see the old path again. I wasn't happy with the GI office but I'm hoping with going to the Hepa my outlook on docs will improve! Going to give it a chance anyways.

12/21/2011 05:38 PM
iwiham1027
iwiham1027  
Posts: 940
Member

Polar the hepa doctors are a breed of there own I found that most of them are very caring and also understanding! They also know what you are talking about and won't give you lip service either. I like my hepa doctor very well. We all need to complain its good for us to get it out especially with people who are going through the same because they understand. Sorry you are where you are at with this disease but hey look at Mike he looks fabulous after his transplant and says he feels well. That is awesome! Good luck with your appt with the hepa doctor I am sure you will feel more comfortable with him. Take Care and God Bless.
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