End stage liver disease

[Jackson1974]

I hope you are able to give me me some answers.  Anyway, my mom was 57 yrs old, and died in October of  end stage liver disease.  2 yrs ago she was with me for a month to help me out when I had my daughter. She seemed to be in excellent health.  In June of '09, she couldn't get a refill of her thyroid meds. She had low thyroid issues.  The doc at the time wanted her to get a blood test, but she lost her med coverage and had a visit planned for going into the free clinic, but they had a 4 week waiting list. The doc told her she had to get her blood tested. She explained the reasons, and he still wouldn't ar least give her a partial refill. About 3 or 4 weeks later,  She ended up in the ER real sick, and found she had went into a mexdema coma. After that event,. she never seemed to be the same.  Being tired, cold, just generally ill.  One of the docs started to giving her potassium.  Her levels wouldn't stay stable and kept going down.  I told the docs that it had to something else involved.  I was told the docs did a liver function after her thyroid incident. They just kept giving her the potassium despite of my objectings.  About a few months late she really got sick, and she was confused, didn't know what year it was ect. It was a few weeks or so later they told us she is in the in the beginning of acute liver failure and needed a transplant, and she has cirrhosis pretty bad.  If the docs that gave her a liver function test, wouldn't that test picked any of this up? They told me that she might have gotten the beginning of the cirrhosis because of a weight loss surgery she had back in 1976.  I was 2 yrs old then and I am 36 yrs old now.  If this is true,  could she have had  cirrhosis  all this time? Could that incident with her thyroid caused the liver failure? Its been only been 2yrs ago, and she was healthy and happy when I was with her. 2 yrs later she is dead. What went so wrong so fast? What happened??

[Thomas D Schiano, MD]

i am very happy to hear that the HCC is well treated.  In most cases however TACE is not curative.  In many regions of the country you must be on the waiting list for 8-10 months before you would get a transplant for HCC.  i do not think you lose anything by accruing waiting time if the HCC is not fully treated.  the goal is to always avoid needing a transplant.

[Thomas D Schiano, MD]

the test might not have told them anything actually

[Jackson1974]

f u want to learn more about liver transplant, there is a web site for the  United  Network of Organ Sharing.---  UNOS.org       They will  tell u info on just about everything, there is to know about  transplants and what and how u do it,.  They tell u what wil happen, complication that can arise ect.  There is also another option you got and that is called Live donor transplants. U will not need to be put on a list and wait. If u have someone like mom/sister or other family that could match u and they can donate a piece of your liver.  As long they are healthly, don't smoke, and they hjave to be either same size as you or bigger and a few more thing.  If u use somebody from your immediate family, they have the blood type as u, or they have real close to you blood type.  When u get a llive donor transplant, the odds that u might reject the liver, gets cut in half if not more.  

I don't know if u knew  about a live donor trransplant or not.  .  But just in case u  end up needing  a transplant, at least u now get  2 different choices.
Good

[Apolitical_Blues]

I have undergone three attempts to rid myself of HCV plus, an additional failed drug trial. In 2007 a biopsy identified a 2.5cm mass as hepatocellular cancer. I was told that no treatment was available and, put on the transplant list. I treated myself with a product called "Life One Formula". Subsequent image studies showed no tumor, those findings were verified. I came off the transplant list. In 2009 the same doctor told me I had cancer again(not verified) but, this time he had a treatment. I was given a T.A.C.E. and, voila the cancer was gone, again. I changed doctors. Now, the new guy wants me to go on the transplant list even though my liver enzymes are now, and have been, normal during all of the 'cancer'. The AFP was at 12-14 and not the 500 you might expect. I feel good with the exception of normal fatigue. I exercise by walking 40 mins. a day. I eat well, get plenty of sleep. Both of these hospitals have transplant programs and, I'm a natural born skeptic...Why put myself on path to replace a liver that is still functioning and, if the studies are right about the supplements I use, likely improving?

[Jackson1974]

Thank you for your response to my question.  Its pretty hard to think how fast she died, well reasonably speaking, 2 yrs isn't really that long.  I keep thinking back and how she had no noticeable symptoms that I could tell.  I tried to look at all the info I could on liver disease and the different symptoms associating with it.  Its been 33 yrs since she had that surgery, seems like a long time for anything to finally happen then suddenly she gets sick and dies.  What really makes me mad is the fact her medical coverage wouldn't approve her for a live donor transplant. I had a 90% match for her to be able to donate a piece of my liver to her.   This why I hope the health care reform really takes effect and hopefully things like whast happened to me and my mom doesn't happen to anyone else.  Again, I thank you for your quick response.

[Jackson1974]

The doctors said they did a liver function test on her after the thyroid incident, why didn't they see this?  Or wouild the test  tell them anything?

[Thomas D Schiano, MD]

I am sorry for your loss.

Weight loss surgery (JI bypass) is well known to have resulted in cirrhosis in many people.  i do not think she had acute liver failure but more likelt a decompensation in chronic liver disease  i really do not that the thyroid played a major role in her demise but it clearly did not help the situation.