Update--Dad with Hep C

That is some great news. I wish your father the best with disability process. If he worked and paid in, he will pay the devil trying to get it out. I have a lot I could say about this subject but will spare you and others my thoughts on that one.


Ziff

Thanks for the update. But if he can't work he would be eligible for disability. A person needs a doctor in their corner when it comes to disability. Thanks for stopping by.

Sandia

Lol ok Ziff, maybe we should let it go!

Good to hear from you LS.

The increase in billi is not good...worrisome actually. Do you think he is totally sober at this time..no holiday cheer? I know that is a touchy question, but it could answer some questions.
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Though wiki is not a medical site, I have used this passage before:

AST/ALT ratio

--When greater than 2.0, it is more likely to be associated with alcoholic hepatitis or hepatocellular carcinoma

--When greater than 1.0 but less than 2.0, it is likely to be associated with cirrhosis

--It is normally less than 1.0 and is less than 1.0 in viral hepatitis (albeit with extremely high levels of AST and ALT).

**However, the AST/ALT ratio is less useful in scenarios where the liver enzymes are not elevated, or where multiple conditions co-exist.
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So, by that rule of thumb...alcoholic hepatitis I'd think... I'd need to see whether his cancer markers were also elevated before I'd make any comment about heptocellular carcinoma.

Most here who are really sick with liver disease have higher AST/ALT that this. Mikes have finally normalized with continued sobriety and transplant.

Hoping you all get through the holidays with a minimum of drama.

Hugs,

The billi shows the kidney response. Are his other kidney markers elevated...creatinine, bun, ggt? When the liver is failing, the kidneys are often involved also. My partner was hospitalized for acute kidney failure 4 times prior to transplant.

Encourage him to keep hydrated...with WATER! Mike drinks about 3 liters of water a day plus coffee and maybe a beverage with lunch and dinner...

How is his edema or ascites situation now?

I'm sorry that you are going through this with him...sad at the holidays really. He must be plenty scared and dealing with it his own way.

Hugs,

so today was pretty much a bad day all around...

Work was about as bad as it gets...I stop by to visit my parents to life my spirits only to have my dad tell me that the hepatologist called him (I actually contacted her about his elevated bili reading) to find out what should be done.

Well today she called him and said he needs to go in for an appointment on Tuesday as they need to act quicker, saying that when the reading keeps going up and down eventually a liver transplant is inevitable.

Needless to say my dad who was in great spirits today looks completely deflated and beat...went from smiles and laughs to borderline depression. I almost feel guilty for not having waited until after the holidays to have asked so that he wouldn't have to hear the bad news...

I feel terrible for him and the family as I was having high hopes....

I agree with Mamalama...its true, a transplant is an amazing gift!

Please don't feel sad...of course, its hard on your dad to know he may need a serious operation, but once things fall into place and he connects with a liver transplant team, the amount of support that the amazing doctors, surgeons, nurses, coordinators and the rest of the staff will provide to both your dad and your family, he and yourself may begin to feel more "comfortable". I hope the message I am trying to convey makes sense

Thank You all for those motivating thoughts. I know deep in my heart that this is par for the course and that ESLD will eventually get to this level. I know that ultimately his being on a transplant list (which is what will now happen) is what is needed and probably a good thing. Although knowing he is on the list, brings sadness to know that in due time I will see him very sick.

David, your story brings hope that he still has plenty years of life left. I just wish he felt the same. I know fear is a common thing, I just hope he is up for the battle.

Worried daughter, I know exactly what you mean. In my position I am as optimistic as it gets but I know for someone like my father it feels like the walls are closing in. I will do my best to get him thinking straight and be positive.

Mamalama, I know the journey has begun to a huge battle....this is all surreal and while my father hates doctors and has put up the white flag, it is now my job to turn that perception 360 degrees...not an easy task with my work life in shambles, but if there is one thing I do know, it is that family and loved ones are a priority. I will do my best to see this through.

Lost Son,
Thinking about you and your dad. Please let us know how the appt goes on Tuesday.

Emma

LS: Good your sister is going on the appointment. After a while on this journey Mike's ability to listen and hear were greatly diminished. Though he wasn't actually HIDING things, he couldn't remember or mis-remembered.

When transplant was first introduced at our house, Mike felt he had caused his own end stage liver disease with booze and drugs and he sort of deserved to die. He joined AA at the center's insistence, needing 6 months of documented sobriety to qualify. He hadn't been drugging since he was a kid (Hep C 1969), but was a drinking man all his life.

He said he didn't need AA, he quit drugs and smoking with self control and he'd do alcohol this time. The docs wouldn't hear of it and required he choose to go or die. He went. And I don't know if it helped his sobriety status, but it sure helped his mental status. From a guy who didn't deserve to live, he learned he was a good man for whom alcohol was deadly.

Week by week he began to learn that good people die tragically every day...accidents take folks all the time and that it is a miracle that a life cut short can SAVE others. One donor can help many people with eyes, kidney liver, colon, pancreas, heart, lungs, etc etc. We think the ICU was FULL his TP week because each of patients had received something different!

Well, this is a process. Hopefully your Dad will find his way to the finish line successfully.

Hugs,

LS,

People do die of liver disease, but the process is long and slow.

It sounds to me that he is pretty high functioning.

Remember how long Mike was infected by Hep C (1969-present-44 years) and drank until he was 61 years old...from teen times--50 years! And way too much. His diagnosis of cirrhosis was in 2003. They told him he would have 15 good years before he needed a liver at that time IF HE STAYED TOTALLY AWAY FROM ALCOHOL. He got another 5 or 6 years of relative calm before the symptoms became more and more clear. He is sober over 3 years now. And doing well.

Hugs,

Hi Lostson.

Sometimes, the doctor may just want to get the ball rolling in regards to getting your dad established with your local transplant center. This does not necessarily mean he needs a transplant immediately, but possible in the near future. There are many tests that need to be done in order to be listed for a transplant, therefore, its good to have those tests done, meet the team, etc. I think its a good idea that your dad's doctor is being aggressive and bringing him into his office to begin the transplant evaluation process. My mom was on the transplant list for many, many years with a low meld score. Then as she became more sick, her meld got higher and higher and then she was blessed with a donor liver. Explain to your dad, that being on the list can be a positive thing...it means that he will have an entire team looking monitoring him and when/if the time comes that he needs to be transplanted, he will be well informed, etc. Hopefully, once your dad has met with his doctor as well as the transplant team, you will both feel much more comfortable. Hope I explained myself correctly. As always, wishing you and your dad the best.

Post Edited (Worried daughter2) : 1/16/2014 5:58:28 PM (GMT-7)

Thanks guys. Lord knows I try and make him see things in a positive light, even though I can understand his fear. I will make sure the doctor really explains to us the reason for all of this. Maybe it will put him at ease. Stress is the last thing he needs.