My dad has hep c and cirrhosis of the liver, I have some questions?

[turtlebeach]

my dad went to the hospital about 13 years ago throwing up blood really bad he was then told that he has cirrhosis of the liver, he's had Hep C for some time before that. A band was put in his throat and he's been good for a long time but every now and then he'll throw up blood and he'll go back and they fix the band. He's very stubborn he never follows up with his docto.Things haven't been that bad it only happens maybe once every couple years but this last time he's been sick for about 2 months really tired out of breath then his legs started swelling and his face was swollen but he continued to work he's very stubborn that way . He finally went in to the ER because he couldn't walk more than a few steps without catching his breaththe. The ER doctors are not really telling us much said that he had some bleeding in his stomach. Giving him medication to stop it they gave him 8 blood transfusions but they're just not say much. They ran some tests and the gastrologist was supposed to come and talk but I don't know if he came when we were at the hospital my father doesn't remember talking to anyone, now they said they're sending him home today after 3 days in the hospital and to follow up with a primary care doctor which he never has because everytime he comes out of the ER he just goes back to his normal routine doesn't take medication he always says hes okay now and he doesn't have insurance and now they're giving him temporary medical and I don't know if that's the reason why they're not really taking things serious it seems like or telling us much, it  seems they  don't  care. what I want to know is this considered end stage cirrhosis ? They did say he could be put on the transplant list he was a big time alcoholic this is what caused it all but he hasn't drank in 13 years since the first time he went to the ER. I just need some more answers because they don't say much, they  don't say how  much time he has, or how  long  the waiting for transplant is, they  don't say much  of nothing :'(

[flyinlynn]

Hi Hector

I was hoping you would see this post and respond

Thanks

[HectorSF]

* 13 years ago throwing up blood
* never follows up with his doctor
* doesn't take medication
* doesn't have insurance
"I just need some more answers... "

Fortunately or unfortunately every person has the right to not take care of their health and to even refuse treatment. Also we all have privacy rights when it comes to our medical condition(s) or disease(s). Some are more private than others and choose not to share their health issues with others. Some even feel they may be stigmatized by others for being infected with hepatitis C, have had alcohol abuse issues or have developed cirrhosis of the liver because of these factors.

So unless your father has designated in writing (HIPPA form-usually when he entered the hospital)) to have access his condition I am afraid legally you can not learn about his condition as it is a private matter.
- Unless of course he wants to share what he knows with you assuming he understands himself.

You mentioned that your father was in the hospital for 3 days. The first thing that was done in the ER was for them to do numerous tests so as to determine exactly what was causing his symptoms. So they could develop a diagnoses and then some treatment. Only then can they start to stabilize his condition. During his stay in the hospital they are constantly evaluating his condition which requires numerous tests throughout each day. They do this until his condition has improved enough for the doctors to discharge him. The medicine that he was given was prescribed for a certain reason and he would have been told what it was for and how to take it.
NOTEL All of this information is in the hospital records which your father has access to and anyone else he designates to have access to so there really is no mystery. If you have HIPPA approval (signed permission from your father) all you need to do is go to the medical record department of the hospital and they can give you a copy.

Also every day when a patient is in the hospital, they are visited by the treating doctor or doctors when they make there "rounds'. The doctors discuss the patient's condition, progress in his condition, any complications or concerns, (after looking at his blood tests, procedures, physical condition, etc.) and possible discharge date. They may also ask the patient a number of question about how they are feeling. This is the time when the patient and their care givers has the opportunity to ask the doctors any questions/concerns that they may have. Apparently you weren't their when the doctors made their daily rounds? And somehow your father "forgot" the daily doctors visits and the updates on his condition.

Front the moment he enter the ER everything that happened in the hospital is documented and is in his medical records. Whether your father chooses to share this information with you is his decision. Each of us has a right to privacy when it comes to our health status. What we choose to share and with who is a person decision each of us has to make. For loved ones it is not always easy. There are some people choose to share their medical conditions and diseases with others. I've known many people who has been diagnosed with End-Stage Liver Disease who's families member knew nothing about their condition sometimes even up until they've needed a liver transplant to stay alive. Everyone is different and we all see things in our own way.

So in the end it is up to your father to share or not share.
It is also up to him alone to decide if he wants to take care of his health or not. No one can make another adult do anything. Even to save their own life. This makes it  especially sad for family members and loved ones. They get caught in the middle and feel helpless. Sadly much too often we see people at our transplant center who won't change their lifestyle even when they know that certain death will be the result. Sometimes people do "wake up" before it is too late. I hope you father is one of them, if not for himself, for you and others who care for him.

Good luck to you and your dad.
Hector

[flyinlynn]

There is so much you don't know right now I could write many things but would be way too much at once.

I am not a doctor but especially on the limited information you have given it does sound like ESDL which does not mean it is the end if your dad cooperated with his doctors and gets his tests done.

Drinking is bad with hep c it can accelerate the damage ad hep c by is self can lead to cirrhosis and eventually ESLD.

The transplant list wait time depends on his MELD score which is derived from his creatinine, bilirubin and INR  (clotting time) tests.

The higher his MELD score the higher he is on the list as livers go to the sickest patients first. Different transplant centers have different average MELD score numbers.

One very important thing about the transplant list is that it is not a given that you are placed on the list it is a long process involving a lot of testing and also psychological counseling.

They want to make sure the patients getting a liver are likely to do well afterwards. For example having a history of not taking your meds when you will have to take multiple medicines for the rest of you life with frequent doctor visits will not be looked at in a positive light possible by his transplant center.

A family member should be with him for doctor appointments to ask questions another effect of ESLD could be hepatic encephalopathy which will effect him in his mental abilities if he gets this condition.

The swelling in his legs is called edema and in his stomach is called ascities this is treated with diuretics  and if the ascities are too severe they can either be drained or a surgical procedure can be performed.

Here is a link from the American Liver Foundation with some information about liver transplant

http://www.liverfoundation.org/abouttheliver/info/transplant/

I wish I had better things to say but please bear in mind I am a lay person and have no experience with all this and you really need to get more information from his doctors.

He still has a chance but he need to fight for this chance

Sorry your dad and your family is going through this

Best to you
Lynn