liver cirrhosis

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ALISONN
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/7/2008 6:18 PM (GMT -7)   
Hi, my father is 56 years old he was diagnoside with liver cirrhosis back on 2007,,his dr. said the first appointment i recall that he had cirrhosis but stable that people lived many years with it. back on feb 2008 my father was in a coma for almost 3 days, it was the liver, when we saw his primary dr. he said that when the liver starts falling at this point he needs to let us know and talk maybe about hospice that he had from 6 months to 1 year left...my father and I of course we're on denial, we asked to speak with his gastroentorologist first, and when we did she said oh no he has cirrhosis but we're not talking about hospice oh no nono. well then she send us to make some echostress ,and a endoscopy and colonoscopy wich we're ok...but when we saw his primary dr. he was like I don't think she was putting much attention to his file?????go see her again and then come back to me....we did and she said well those test you got done we're ok but I only wan't them for  future reference ...your are sick but just keep taking your lactolose and medss..and Im like well is he a candidate for a transplant or not...she well he is not even close for passing the meld score yet.
well my concern is that between all this time since the coma, my father has already been hospitilized twice for confusion he is totally out of his mined,,,and i have reasearched and with his labs his score for meld is 8..
I myself already lost my job!!!to much distress not able to concentrate,
I ask for help

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/7/2008 6:26 PM (GMT -7)   
Hi Alisonn and welcome to HealingWell. I am so sorry that your dad is suffering with liver disease. This forum has a tremendous amount of information that may be helpful to you. If you read some of the posts you will find that the members collectively have a text book full of knowledge and most have first hand experience. I am not sure exactly what help you need but feel free to ask any questions you have. It sounds like you and your dad received some really mixed messages from the two Dr's. That can be really exasperating to say the least. Please post again and let us know what we can do to help you OK?

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


ALISONN
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/7/2008 6:33 PM (GMT -7)   
Do you know what is the score limit to be on the waiting list? MELD SCORE?

ALISONN
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/7/2008 6:35 PM (GMT -7)   
I NEED TO GO
THANKS BYE

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/7/2008 6:37 PM (GMT -7)   
Hello Allisonn and welcome to HealingWell. I know how stressful this must be for you. But first of all try to calm down. I know it's hard because we are talking about your father here. But you will retain all the information better when you are not so stressed.
For your father to go into a coma with that low of a meld score seems funny. When he went into a coma was he on Lactulose? Was he having bowel movements daily? Does he take the lactulose like the doctors ordered? I know that it is a real nasty medicine but he has to take it like the doctors have ordered to keep his ammonia levels down so that he doesn't get confused.
Have the doctors suggested and type of diet for him?
Allisonn please read through as many old posts as you can. There is a wealth in information here. Knowledge is power.
Are you his sole caregiver? It's going to be a very hard bumpy road ahead. So it would be good if you had help.

Take care.......thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/7/2008 11:54 PM (GMT -7)   
Hi Alisonn,
Welcome to the forum. I'm new to it also and have found sooo much vital information and support. I know that you will too.
Regarding MELD scores, my research shows that there is not a set number but in my reading, it seems that the typical point is at 16 and above. There seems to be a movement to standardize on 15. The caveat is that the MELD score can be altered by quality of life issues that will increase it.
After researching, I am trying to hold out as long as possible. Statistically, if I were to have a transplant today, it would reduce my chances of living out the year by 5% as compared to doing nothing but my medication. My MELD is 13 (I think) and I am generally healthy otherwise.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


trixiegal
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/8/2008 2:04 PM (GMT -7)   
I have been suffering with liver pain and high liver enzyemes for about three years, I had a liver biopsy three years ago, it showed a fatty liver. I went back to the doctor and had more blood tests a week ago, because my enzeymes were high again.
They think it might be autoimmune hepa*** the dr said she may put me on   presidone if that was my diagnoses, I have heard this drug can make people look fat and causes a big weight gain, is this true, they have also tested me for a gluten allegry. I dont think I have the latter because Im sure it would have been diagnosed long before this. If anyone is willing to talk about this liver diease and the medicine to treat it I would really appreciate it. Thank you tongue    

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/8/2008 4:56 PM (GMT -7)   
Hi trixiegal and welcome to HealingWell. I know you must be frustrated while waiting for a diagnosis but try to think positive. IF they tell you that you have autoimmune hepatitis there are medications that can help you. You asked about Prednisone and I know that it scares you and can be a little overwhelming right now. Predisone is a corticosteroid hormone and has been around for a long time. It is used for a lot of illnesses in the hopes that it will decrease certain symptoms. In your case (if you get diagnosed with it) you have to understand what the immune system does first. One of the functions of our immune system is to attack virus' and bacterial invasions.  When the immune system gets confused it starts attacking healthy liver cells and over time the liver gets really sick and can't perform it's normal duties.  Autoimmune hepatitis patients are usually started on high doses of Prednisone to try to control the autoimmune response. The doses are lowered gradually over time as the disease process slows down and gets under control. The goal is to get you on the lowest dose possible and still control the disease. There are side effects to taking prednisone over a long period of time. Keep in mind that I am telling you that for the side effects normally seen such as weight gain is if you take them long term. The side effects are, weight gain (because predisone causes you to be hungry all the time so you eat more), mood swings, hair loss, high blood pressure, anxiety, and confusion. This does not mean that you will have all these problems I just listed but you may have some if you take it for a long time. If on the otherhand you don't take it when your Dr advises you to then the autoimmune hepatitis progressively gets worse and you will have other more serious problems. First tho you have to wait to be officially diagnosed so don't fret too much until you know for sure. There is an abundant amount of information in this forum so please browse thru the posts and read as much as you can. I hope this helped you a little.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/8/2008 5:35 PM (GMT -7)   
Hello Trixiegal,
Just wanted to welcome you to HealingWell. As you see we have very knowledgeable and compassionate people here. I also wanted to tell you to try and not worry too much. I know how hard that part is but it really doesn't do any good to stress yourself out over something that may not be. If and when you get diagnosed that when to go into action about everything your doctor wants you to do. So get educated now so if you are diagnosed with AIH you know what questions to ask your doctor.

Good luck and take care...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


trixiegal
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/8/2008 6:39 PM (GMT -7)   
Thank you so very much, great information, kind and caring people. Thanks dansbrother, 1shelly1, and grandma, I will let you know after my appt on april 23rd. yeah

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 4/9/2008 3:28 AM (GMT -7)   
Hi Trixiegal and Welcome to the forum.

I know it is hard but try not to worry too much until something is determined Shelly has given you some good info on the prednisone and as with all medications there are side effects. However, my experience on the medication has not been bad. In fact it has allowed me to be able to be myself again. Again try not to worry about things that you don't know and good luck on your appointment on the 23rd.

Lucy

trixiegal
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/9/2008 3:39 PM (GMT -7)   
Ty Im glad to hear you had a good expierence, it just seems most people lose their hair and grow hair on their face, suffer from dry eyes, expierence confusion, weight gain. Im not going to worry , and thanks for your kind words .

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/9/2008 4:15 PM (GMT -7)   
Trixie, please don't focus on all the POSSIBLE side effects. Focus on feeling better.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


trixiegal
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/9/2008 6:47 PM (GMT -7)   
lol, no dansbrother I cant say I have, you guys are right Im putting the cart before the horse, again I want to say its such a pleasure to be on a fourm with such kind, honest , compassionate people. I will take all of your advice . Thanks everyone.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/10/2008 4:44 AM (GMT -7)   
dansbrother, that was a good one. LOL

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 

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