My father is going through end-stage liver disease and waiting for a liver transplant. Things are happening to his body and mental status that I never imagined... the drs only give brief explainations. Has anyone had a liver transplant or know someone that has? If so... briefly what was it like both before and after?
Although, I know that many have experienced same and/or worst things revolving around the same situation but I feel that I am the only one because I have no one to relate to on this level. Please help, I know these things can be personal but any information might make me more at ease. Thank you to anyone who answers. I know many people that have had a liver transplant in the 7 years I've been involved in my hepatitis & liver disease support group. All of them are doing well. Before you get a liver you have to be very, very sick, but not so sick that you can't survive the surgery. The brain fog, or hepatic encephalopathy your father is going through is because his liver is not able to filter toxins, and the ammonia that builds up in the brain as a result of the toxins is affecting his cognitive abilitiy.
You are not alone, by far. Have you tried to find a local, in person support group? Check with your local hospital or transplant center. There you'll find others who are going through the same thing. Liver disease is hard on the family & care-givers, as well as the patient. My support group saved my sanity. I felt as though I was alone. I found out I wasn't. There's nothing like sitting in a room with others who know exactly what it's like to walk in your shoes. I learned so much from our support group members. Best wishes to you. I assume your father has end-stage hepatitis. It is very hard to watch someone you love waiting for a last min. reprieve. End stages of this disease ( or any liver killer) are brutal. I assume you have gone thru a lot ; as has he. A liver transplant is a very tough; but very do-able surgery. After the trans-plant he will recover quickly , in most cases. The jaundice will go away in about 10-14 days and his ability to express him-self will return. right now ; end stage, confusion is part of the chemical imbalance. Hang in there! there is hope!! I worked for a gastroenterologist for years and we sent a lot of people for transplant. I know that because the liver is the main filter for the body, when it fails it sort of poisons the whole system. It causes mental disorders, medicine isn't metablolized properly, other organs are disrupted because the liver can't filter the wastes out so sometimes there is problems that crop up there. Our patients who had the transplants, came back acting like different people. They felt and looked better, they were clear and could communicate and seemed so happy to have a second chance at life. There are a lot of drugs that have to be taken to prevent rejection and lots of tests to be done for the rest of their life. But most said it was worth it after what they suffered before. It's not personal, but an observation. I hope it helps some. I will remember your dad in my prayers. This link will tell you the causes of the disease, the symptoms
he may have and more about cirrhosis of the liver.
http://digestive.niddk.nih.gov/ddiseases...
I know this is quite frightening to see all the things your
father is going through.
I will try to explain this to you, what a few of the things are
you may be seeing and why they are happening.
You may notice that he has yellowing of the whites of the
eyes and the skin. He may also have stools that appear
white and urine that is a light to deep brown color.
Two organs of the body transform the iron on the dead red blood cells in our body to a substance known as bilirubin.
This bilirubin, when first formed, is not soluble in fluid.
It is transported to the liver on a protein known as Albumin.
Once the liver receives the bilirubin, it converts it to a
soluble form which can go into the bile and flow with the
bile to the intestines to help in the digestion of fats we eat.
When the liver is damaged, this bilirubin doesn't get
converted to a soluble form and therefore instead of
flowing with the bile, it can go out into the blood. This
can also happen it the tube like structures that the bile
flows through become blocked, twisted, or mal formed.
This bilirubin is greenish yellow. When there is too much
in the blood, it makes the yellow we see on the whites of
the eye and the skin. Since the kidneys try to remove
this in the urine, it make it appear darker in color. And
since it isn't going to the intestines properly, the stools
lose their color. I hope this makes sense to you.
Another thing that can happen is that your father may
become confused and his memory may not be good.
His personality might change some. This is because
the liver is damage and many different toxins are going
back into the blood. Ammonia is one of them. This
ammonia can go pass the blood brain barrier, the
usually protects the brain from harmful substances.
This causes this to occur, once it reaches the brain and
builds up. Patient are usually given medication to try to
prevent this from becoming so bad. (This is known as
encephalopathy)
There is also a build up of fluid in the abdomen and the legs.
(This is known as Ascites and edema respectably)
The liver makes a protein known as Albumin. You read about
it carrying the bilirubin to the liver...but it also has the function
of carrying many other substances around the body and
the ability to prevent fluid from leaking from our blood vessels.
When the liver is damage, it doesn't make enough of this
protein and the fluid starts to leak out and collect in the
area of the abdomen. Liver patients also have a high
sodium level, which holds the water in the body and causes
edema (swelling of the legs, feet, etc)
Your father may look like a skeleton that is pregnant with
twins. If you go to the Yahoo or Google search engines
and click on Images and then type in the words,
Cirrhosis, then Ascites....you will see pictures of others
who have this and what the liver now looks like compared
to normal.
I hope this helps you to understand better.
>>>>>>>>>>>>>>>>>>>>>>>>
Now for transplants:
To have a transplant, the patient has to go through a
series of tests to be placed on the transplant list.
He will have blood work done frequently to see how he
is doing healthwise. Your dad should be with a
specialized doctor known as a Hepatologist now.
To understand more about the transplant process and
about the liver itself...here is a link to a very good resource.
I recommend this site to anyone thinking about having one.
http://www.surgery.usc.edu/divisions/hep...
You want to know how a patient does after transplant.
That will depend on alot of things...whether he has many
other medical problems, how old they are, etc.
However, patients who come through the transplant,
their coloring of their skin will turn back to normal. Their
minds will clear and they will think clearly again. They
will regain any weight they may have lost and their muscle
tone will come back. The way you remember them when
they were healthy before, is what you will see develop
overtime. It is wonderful to see this take place.
They will be on medication to keep the organ from rejecting.
They will need very special care. I know someone with
a liver transplant and he is 4 years out from his and is doing
well. There is hope.
The sooner a patient is evaluated for a liver transplant, the
better. He will be watched by his doctors and the
transplant team much closer that way and you will have
a contact to help you understand what is happening, why
it is happening, and if a emergency should arise.
It would be great also to see about setting up a living will,
or advanced directive or a power of attorney right now...
so someone can step in and take care of things for him
withour hassle. Living wills and advance directives are
free online in many places. Power of attorney, you might
need a lawyer for. The privacy laws that are in place,
can make it extremely difficult for anyone other than the
patient themselves to have access to medical record,
pay bills, etc unless they have some sort of authorization
to do so. The doctors don't have to even talk to you if you
don't have this, about your dad.
I hope this helps you. I know how hard this all is to
swallow. I have been through it myself..... |
