Demand a biopsy?

In lieu of a biopsy right now, you could request an MRI with Gadolinium contrast. If he DOES have cancerous tumors, they would "light up like a Christmas tree" on such a scan. My two were detected by this method both times, though they did follow up with biopsies to confirm HCC and denote the size of the tumors.

hugs,
Connie

I will ask for his lab results and also list his medications to see what you guys think. I also feel a month is too long. But I would think a Hepatologist of all people would know the time sensitive nature of cirrhosis...so maybe she knows something I don't? On one hand it gives me hope but on the other hand it scares the crap out of me.

MRI and CT show cirrhosis, biopsy confirms, stages and helps identify cause. My cirrhosis was visible on both.

I see On your first post you said he had End stage cirrhosis. Where did that come from, seeing as there is some question? You said he waS being transferred to another hospital. What happened with that?

After his transfusion did they check his hemoglobin again?
When you get all the results, you will know a lot more. When were the last labs done? Does the hospital have a patient gateway where you can access his records online? Many do and it's so convenient.

You should use this time to contact the TP hospital to start the ball rolling. You just call and they will send you forms about his insurance, medical history and records etc. Before you left the hospital did you request his records? If not, you call and talk to medical records dept and get that ball rolling. You will be needing those wherever you go for treatment.

I think it would have been easier to stay with the same thread as I keep referring back to see his history.

Post Edited (Mae be here) : 8/8/2013 8:57:43 PM (GMT-6)

The end stage cirrhosis came from his primary care physician. He visited him in the hospital and said your liver is in bad shape. There are 4 stages to liver damage and you are at the end. You need to stop drinking completely.

After the transfusion they did check his hemoglobin and that is when they determined he can leave. He was never transferred but rather sent to an appointment with the Hepatologist the next day. Then to his primary 2 days later. His primary stated he still didn't have all the lab results...I was unable to go with him that day due to work but I told my dad to make sure he gets them when he goes next week. I will make the effort to go with so I can ask for the results and post them here.

As for him, I stopped and visited him this morning before I came to work and he is walking at a slow pace but looks to be doing his best to "be normal" Not sure if his weakness will stay this way or if it gets better with time? I thought it was because he was freshly out of the hospital. Hopefully he starts improving.

His doctor told him he can no longer work due to his condition. I fear this will cause him to go into depression. He is the type of person that needs to be active and busy to feel a purpose. Not to mention my mother is still working and that makes him feel worse.

I had a question regarding his activities. He is currently not driving because he feels weak and disoriented but is this something that will eventually go away enough for him to drive?

Last night he had plenty visitors and one of my close family members said "he looks worried" Well yes I would assume so...even though in front of me and my immediate family he has on a strong face and tries to act as if things are business as usual. The main reason is I have a younger sister (18) that is scared to death. I don't think she could even begin to fathom the thought of losing my father.

I choose not to visit my father when family is over because everyone is treating him like he is on his death bed. They hear "liver disease" and automatically think they need to visit him and subtly say good-byes. I refuse to see that and to accept that.

Call me a dreamer but I will do all I can to see my father with us for years. I plan on proposing this winter after a loooong relationship. lol. And I need my father with me. I will continue to be optimistic and have even spent time talking to an old friend that is very religious and spiritual. She truly is helping me just like everyone on this board.

Well said Connie, PC docs simply cannot handle the intricacies of liver disease. That's why hepatologists get the big bucks.

Meanwhile I hope you're gathering his records, and it would help us to know his medications and lab results. You might be able to get them faxed to you or your dad. I had a feeling you were thinking marriage :).
Hope this all settles down and dad starts improving. I don't think liver disease improves on its own though it can either be treated or the effects can be slowed. I am concerned that you say he is disoriented, this could very well be high ammonia levels which is very treatable and common with ESLD. It causes hepatic encephalopathy and untreated can lead to coma. Lactulose and xifaxin combo seems to work the best to prevent this.

So he can't work, meanwhile what are you doing to move things along? You should have already gotten his records and his test results. We could tell you so much more. You want to help him, you need to start yesterday.

Another thing, is his diet being monitored, is he eating less than 2 grams if sodium daily? Do you know for sure he is off the booZe?
These are all things that are important if you want dad to be well enough to attend your wedding.

Time to be proactive.

Post Edited (Mae be here) : 8/9/2013 2:10:07 PM (GMT-6)

Thanks guys. I am trying to stay strong and do my best. I feel my father is doing really well with the no Alcohol thing. My mother is on vacation these next 2 weeks so that helps keep an eye on him. Over the weekend I went for a visit and he seemed in good spirits even saying "next year" he wants to go on a vacation. It was refreshing to hear he has ambition.

This whole thing has opened my eyes to the realities of life and how we need to appreciate what matters. The past 5 years I have been so focused and stressed by my career that I lost sight of what was important. It's amazing how it is also a wake up call. My job is so stressful that over the years I went from not drinking at all to drinking a few weekly to "take the edge off" Now I know to also tone it down as I wouldn't want my future family to go through this suffering.

I know this is a battle for my dad and I haven't considered getting him into AA or anything like that, but I know eventually he will if he ever wants to get on a TP list.

Mae, I am moving things along and have gotten him scheduled for an appointment this week and spoke to the doctor to get results back fast. He noticed I was upset and hope this gets things moving. It may be "par for the course" for them but not us.

I agree with Mae about your dad going to AA meetings as soon as he is physically able. He will likely say he "doesn't need it" and that he can do it on his own. But tell him to think of it as "insurance." And he will also need the documentation of attendance should he ever be evaluated for transplant. Just as Mae said, he doesn't want to run out of time and be ineligible should he go south fast and he doesn't have the required documentation.

To clarify that: Make up a simple form with your dad's name, name of AA meeting and where, time and date, and have it signed by the chairperson. Every meeting has a chairperson. He should have it signed immediately after the meeting. He won't be the only one. If he says he doesn't like the meeting he goes to, he can find one at a different time or place.

AA got me sober 27 yrs. ago and I have remained so. When I had my transplant 21 mos. ago, alcohol was a non-issue.

Hugs,
Connie

Hi Lost,

I want to pipe in about the AA thing.

My Mike was really sick before his transplant. I may have posted on your earlier thread so you know he was an alcoholic with Hep C and liver cancer. Bad news.

When he quit drinking he opposed AA. Said he could do it on his own. And in a way he did. He quit and had no slips and says the stuff doesn't even smell good if someone else is drinking it.

BUT. Though he opposed AA, when he realized he needed a transplant he had to have documented cecessation program in his record, for 6 months.

He was doomed without transplant at that point. His liver was decompensated. So, he went, sick as a dog.

Then he stopped *****ing and talked about his unworthiness to have a transplant since he had been a kid who abused drugs and drugs are bad...in essence he felt that he deserved to die. That a donor liver should go to a good person. Deserved to die? Got clean 40 years ago and deserved to die? Well, the guys talked and talked and he listened and listened and started to change his thinking. Started to think of himself as worthy and started to WANT that transplant. Started imagine himself well and strong again. he wanted to go early and help set up (he could hardly walk but they pretended to let him help). And he wanted to stay late and chat with the guys. He never spoke at the meetings but the goodness rubbed off on him and he made some really nice friends.

When Mike was finally transplanted, they had a representative call me every day, someone or other of "the guys" to be sure he was doing well. Then when he was on his feet again, he went to a meeting and they all cheered and had cake! Their poster boy, that you can come back from the brink and LIVE.

He hasn't kept up with those guys and I wish he would. But he is doing well, and that counts.

Best to you and your Dad.

Carol