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Posted 8/21/2013 1:56 AM (GMT 0)
Hi Alex...sounds like you had a good evening with your dad. Keeping things as normal as possible is key. His friend visting, another very positive thing to keep your dad's mind busy. Sounds like things are going in a positive direction for your dad especially with less jaundice. One day at a time...please continue to keep us posted on your dad and his upcoming MRI appt.

Post Edited By Moderator (hep93) : 8/28/2013 8:41:19 PM (GMT-6)

Posted 8/21/2013 2:48 AM (GMT 0)
Alex,

Reading your post reminded me of a few other things...

Doctor told us that bilirubin would most likely be the last lab to return (if ever) into normal range. This has been true for my husband. His last tests, 3 years since dx, and his direct bilirubin is now the high normal. His serum bilirubin also went down 1/10th of a point and is at 1.6. Our lab's high normal is 1.2. It was over 12 when it was at the highest.

Also, our healthcare provider made sure that my husband had a flu shot and pneumonia shot. Also shingles vaccine. They did tests for hep a, b, and c. Then he had the 3 shots (over a 5 or 6 month period) for hep b vaccine. Check with your dad's doctor about that.

Like you saw your folks, we spent alot of time sitting. Mostly because my husband just didn't have the energy to do anything other than that. We spent much time in our thoughts. Watched alot of tv. I tried to have us watch alot of comedies. Hoping that laughter would be good medicine. After the first few months, we started planning a big vacation for the next summer. I wanted to be sure that husband had something to look forward to...something to plan...keeping it positive. For us, this worked out, and we did take this second honeymoon.

As for the ensure, it can be expensive. I think you mentioned that your dad has stopped working. We found that Costco and Walmart sold it by the case at the best price. Also, Walmart will do it by on line ordering. I believe you mentioned your mom has some health issues. Anytime you can take one task off your plate is a good thing.

Take care.

Emma
Posted 8/21/2013 3:45 AM (GMT 0)
Emma,

Today was the first day I heard my dad mention doing something in the future. It was very nice to hear. He also spends most of his time sitting and watching TV. He lacks the energy to do much more although my mother mentioned today that he was more active and was walking around and doing more than he has since he has been home.

She also mentioned that he went and grabbed a scale they have in the garage to weigh himself. Obviously he too is taking notice to the weight loss. We were all relieved to see he actually gained a pound! Overall, he is still down significantly but in his state to gain a pound in 5 days I think is good.

My mother is suffering from Osteoarthritis and despite this still works. She is the heart and soul of the family and truly is an amazing woman. I'd describe her as the tree trunk while the rest of us are the branches. She knows that we all depend on her and it is amazing how much she does.

I know the ensure is expensive but I will purchase them for my dad as long as they help. I work so hard that I'm willing to put my own goals aside for the moment and be there for them financially. For example I went out and bought groceries for a few weeks (Healthy food of course) Just so they can have it on hand.

You mentioned your husband is going to appointments every 6 months, apart from the relapse (hope this changes soon), physically how has he progressed? What are the doctors telling him?
Posted 8/21/2013 4:18 AM (GMT 0)
Hi Alex,
It took a minimum of six months, for husband to get health back. Then it has gotten better and better (except for current relapse). He started going to gym in 2012 and walking on treadmill. Made it his thing to write miles walked on calendar so he could keep stats.

After he stopped drinking he noticed that he felt all sorts of aches and pains...other than the liver disease elements. Moderator Connie said that the aches and pains were probably there all along, but that the alcohol was masking them.

His doctor was reluctant to give prognosis as to life expectancy, we had asked the doctor about that early on in husband's illness...at that time doctor said that he didn't know husband well enough yet to say. It wasn't the answer I wanted, but it was appropriate and honest. We haven't asked since. The doctor has said that husband's liver is working...but has never given percentage or anything like that.

Alex, you sound like a very thoughtful man, and I am sure that is a wonderful gift to your family. Very touching your thoughts about your mom. That is how I felt about my mom too...and I hope my sons think that way about me. :)

Best,
Emma
Posted 8/21/2013 1:30 PM (GMT 0)
I was thinking that Alex reminds me of my own son.

With such an attentive and caring son who is so motivated to help dad improve his health, I suspect that down the road Alex will fill their home with plenty of grandchildren :)
Posted 8/21/2013 3:08 PM (GMT 0)
Emma & Mae, Believe me when I tell you that even though we don't always say it we truly admire our parents and all they do so I'm sure your sons feel the same about you. Truth is, that no matter how strong we portray, our biggest fear is losing our parents and everything they have meant to us.

For me personally being a grown man, I can easily say that my mother is my best friend and my father the man I want to be one day. for a decade I have wanted to tell my father all I ever want is to be half the man he is. That is not being emotional or mushy but an actual true statement. Not just because he is my father but he is a great man. Not sure why I haven't told him yet...as for the grandchildren Mae, I am going to start working on that! Lol. As I mentioned before, I have done what I needed to get my career off the ground and now my focus is back on my family and my personal future.

As for a prognosis I know what the "average expectancy" is. But I try and put that in the back of my mind. When we first went to the Hepatologist I asked the tough question for my father and the doctor just replied with "Well, at this stage it is not as bad as I've seen so I am comfortable saying 85% chance to live over a year" Hmmm....not the answer I wanted and quite frankly it's scary.

But that is why I like this forum. Reading a story like Emmas and how her husband is doing better now and it has been 3 years since the dx. Hopefully the relapse is just a minor set back and he continues on the path he was on and has lots of life yet.

I am nervous and yet a bit anxious to get more results for my dad. A part of me wants to know while the other part doesn't.

But in a few weeks time I know we will have more answers. Until then I will continue to be supportive for them and pray for the best. I truly have started to tap into my faith and spiritual side much more lately. It is comforting.
Posted 8/21/2013 7:08 PM (GMT 0)
Alex, at some point I hope you will be able to open up and tell your dad exactly what he means to you. I know he will appreciate it and be touched by your words.

I'm a little envious in reading about your folks. I never had that...a "normal" family. My parents divorced when mother was pregnant with me and dad remarried and moved across the country. I never met him...and he committed suicide when I was in my late 20s...which devastated me so much that I turned to IV drugs to numb myself. Now I'm paying for that with hep C. My mother was a successful career woman, but eventually lost that due to her alcoholism, which got worse and worse. I basically raised myself. She was either at work or passed out. Strange thing...she lived to be 81. But I had cut off all communication with her 25+ years earlier...and no regrets. The good thing out of this is that I became VERY independent. The downside was that I found it hard (and still do) to ask for help...though have gotten better about it since all my surgeries and medical problems...simple things like rides and taking my garbage out.

I just miss what I never had. And never will.

Also remember Ziff's story. He drank more than your dad and was in a really bad state at one point...but is doing well today...not perfect, but pretty darned good.

As for the Ensure, if you can get a physician to write an Rx for it and then take it to a specialty pharmacy, or the pharmacy at the hospital he was in, they may be able to give it to you (or him) if your insurance covers it. I have seen this at Shands Hospital...and people picking up adult diapers and bed pads, etc. The trick is a prescription for these items and getting someone to honor it. I know that there are also organizations that will obtain Ensure for your dad and supply it free or at low cost. Look into this locally. If he needs "durable medical equipment" like a high toilet seat with arms or a walker...Medicare will pay for it. Probably other insurances, too. Again, he would need a prescription and deal with a medical supply store. Depending on his income and assets, your folks may be eligible for food stamps...at least a portion. I only get $33 a mo., but it sure comes in handy the end of the month.

There is help out there if you need it.

Hugs,
Connie
Posted 8/23/2013 6:41 PM (GMT 0)
Thanks Connie, I have started to consider all these things that I hadn't before (financially) They are getting to that age and with the health issues will need all they can get.

So my father went for his MRI today....He actually just got out. They said they would send the results over to his doctor...I am so nervous. As I know if "it lit up like a Christmas tree...." we got big problems.

Praying for the best!
Posted 8/23/2013 6:49 PM (GMT 0)
Me too!
Posted 8/23/2013 7:20 PM (GMT 0)
Ditto. But "big problems" depends on the size. It usually takes at least a couple of days to get MRI results. I'm having one of my spine on the 30th (L3 fracture) and will get results on Sept. 3rd when I see the neurosurgeon.

Hugs,
Connie
Posted 8/23/2013 10:22 PM (GMT 0)
Alex,
I will be keeping your dad is positive thoughts and prayer for good MRI results.
Best,
Emma
Posted 8/24/2013 4:27 AM (GMT 0)
Thank you all for the good wishes.

Connie good luck on your results.

I will keep you all posted on the results.
Posted 8/24/2013 5:55 AM (GMT 0)
Thanks, Alex.

Hugs,
Connie
Posted 8/28/2013 9:27 PM (GMT 0)
Hi everyone, hope all is well. I wanted to send an update and see if anyone can help make sense of it.

So my father went for his MRI on Friday but as of today hadn't heard anything. Finally wanting some kind of answer I took it upon myself to call the Hepatologist and see if they had some results yet (Blood work)

Surprisingly they were very accommodating and helped out. They said the blood work came back fairly normal. Said he was negative for Hepatitis B and C. And immunity to A which is a good thing. He would need a vaccine for B? So in any case this is good news. No Hep C.

They also gave me some other numbers that I have NO clue what they are but I'm sure you all do.

ALT - 22  AFP - 71  and bilirubin - 5.2 She mentioned the Bilirubin was elevated and the high end of normal is 1.4.

They are still in the process of getting the CT scan and MRI results. But that is what we have for now. What do I make of it? Good...Bad...normal?

Thank You

Post Edited (lostson) : 8/28/2013 3:43:49 PM (GMT-6)

Posted 8/28/2013 10:39 PM (GMT 0)
Hi Alex,

At its highest, my husbands bilirubin was 12+. So while the 5.2 is high, it could be worse. You may want to check and see if there are other labs available. Then you can see which way things are trending...which is more important. It is important to find out your dad's INR (how quickly blood clots) and creatinine (kidney function) as those two tests plus the bilirubin are used to calculate the MELD score. ALT is in normal range. I am not sure about the AFP, hopefully one of the moderators will be along to answer that one.

I hope that you are taking care of yourself...

Praying for you and your dad and family.

Best,
Emma
Posted 8/29/2013 2:51 AM (GMT 0)
Hi, Alex. The AFP is elevated. This is a tumor marker. The MRI will confirm that there is a tumor or more than one. Were you given any indication of when those results will be available?

As Emma noted, the ALT is normal. That's a liver enzyme. Another one is the AST. Do you have that one?

Fantastic that he doesn't have hep C! HCV is the usual culprit with HCC. So this is kind of a mystery. Good that he has immunity against hep A. He should go ahead and have the hep B injections (there are 2 or 3 at intervals.)

Please continue to keep us updated and take care of yourself.

Hugs,
Connie
Posted 8/29/2013 3:24 AM (GMT 0)
Hi Alex.

Glad to hear you're getting some test results back. The waiting can be stressful. Typically, turn around time for MRI and CT results is 24-48 hours, however, it depends on the facility and how busy they are. I would "assume" that since its taking a while to get back the results that might be a good thing...usually, if they see "something" the doctors office will call you right away. Hoping you get all your answers soon. Hope both you and your dad are doing well. :-)

Post Edited By Moderator (hep93) : 8/29/2013 2:12:18 PM (GMT-6)

Posted 8/29/2013 4:04 PM (GMT 0)
I was not given any other results as of yet but plan on calling his doctor today. I'm surprised they do not have the CT scan and MRI results. But hopefully no news is good news?

I was reading that high AFP is a sign of possible cancer. I know he had tumors and I know that is a serious threat. But I would think an MRI would have spotted that right away.

I went to my own doctor for a follow up and told him about my dad. He was very sympathetic and said sorry man that is some serious stuff. Is he a candidate for a transplant? Otherwise you need to start planning your goodbyes...

I know that sounds harsh but my doc is really a good guy that is a straight shooter. Sometimes you need a reality check.

But I am still thinking positive!

Posted 8/29/2013 8:14 PM (GMT 0)
Alex, yes, the MRI would show if he has cancer or not--IF Gadolinium contrast was used. If they used something else or nothing at all, then "something" may show up, but not be conclusive for HCC.

I really hope you get results SOON! And yes, call them about it every day until you get a response.

Hugs,
Connie
Posted 8/29/2013 9:55 PM (GMT 0)
LS,

You have to be careful about the tests and results and trying to be a doctor and diagnostician.

This is how my partner's doc explained the AFP tests to us:

High AFP can be a predictor of liver cancers.

And that most all folks with liver cancer have high AFP.

BUT, and this is a big BUT...100% of folks with high AFP DO NOT HAVE liver cancer!

It can be a predictor but not a definitive diagnostic tool.

Too many false positives.

But, when the AFP is creeping up and up, you can be sure the docs are checking with MRI and CT scans pretty often to make sure nothing his hiding from them!

Mike's AFP had been creeping up before transplant in 2010.  They did CT or MRI often. Then in Feb 2011 they found a small tumor.  It bumped his MELD score up so he got closer to transplant. In 3 months it grew and he got his liver as soon as they had a match...weeks after the second MRI!

Now, post transplant, as a previous HCC patient, they see him every 4-6 months. His AFP was creeping again and then, for whatever reason, it stopped climbing....leveled off and went down this month.  Huh?

We are letting the docs do the worrying. They check him out so often I think they'll be on top of any new developments.

Best,

Mama Lama

Posted 9/3/2013 4:52 PM (GMT 0)
Hope everyone had a great weekend...guess it's back to the daily grind!

Over the weekend I decided to take a nice drive in the downtown area and just enjoy the sites. Well, how quickly I was reminded of my dad when I passed by Northwestern Memorial Hospital.

I believe I saw on someones signature here that it is where they received a transplant. After some research it seems it is the best Hospital in the area for this.

Currently my father is being seen at a different hospital that quite frankly hasn't really done much. Luckily the follow up appointment is next week (Can't believe how fast a month passed by) So hopefully we will have some answers at that time. I will also look and ask around about getting him to see someone at the other hospital as I think it will be a better place.

My father lately has been looking better. He is still very tired and winded especially in the mornings, but by afternoon he is more upbeat. Yesterday he was even fixing the sink! Good sign but we all tell him to slow down.

He has started cleaning out the garage as well. At first I thought it was a great sign because he was feeling well enough to do so, but then I was crushed when he said..."I want to leave things as easy as possible for when I die soon." Of course I brushed it off and tried to make him feel positive. He just smiled and said "It's cirrhosis bud, there is no going back. I don't have much time." At that moment I pretended I had a call and walked out as I got choked up and felt the tears coming.

I know my dad is just being a realist, but geez is it so hard to see someone you love and deserves so much in a situation that you can't help them.

Plus I am faced with a tough decision, he made me promise that I wouldn't let doctors keep him alive "with a bunch of band-aids" for a long time. He wants to go peacefully.

Despite all of this I feel good this week and will not let him get down. I'll continue to help him get better...because even though people say you cant, I think you can.

Have a great Tuesday!

Alex
Posted 9/3/2013 5:43 PM (GMT 0)
Hi Alex,

My husband went through similar fatalist thinking when he was first dx. He was calling and crying with his best friend...freshman college room mates...asking him to deliver his eulogy. Thinking about who he would leave his "stuff" to...things like that. I am just guessing that it is part of the process of coming to terms with having a chronic illness. As time went by and he felt better, he would say he isn't sick, he has a condition. That was also a mental focus/shift change.

Anyway, I guess I am just saying to hang in there. Don't try to read too much into anything...this is all new for your dad and your family. And it is serious, and it is scary... But, it isn't necessarily an immediate death sentence.

Take care.

Emma
Posted 9/3/2013 6:21 PM (GMT 0)
Hey Alex,

It's good to hear that dad is up and doing things, even though he is a bit pessimistic, you're there to pull him up by the bootstraps. Stay focused and upbeat, it will rub off on him eventually.

Why isn't he at the other, better hospital for dx and tx? What is the holdup there?

I hope you're reassuring him that you won't let him suffer a painful, agonizing death. Tell him that you would want the same for yourself too. But also give him hope that there may be more expertise with the docs at the transplant hospital and they've been known to work wonders. A positive attitude on his part can only help.

I wouldn't discourage any projects or exercise, he will only do what his body lets him do. Now is an important time for him to eat properly and enough to avoid muscle-wasting. He will need excellent nutrition to fight this bad boy!

He is very lucky to have you advocating for him. It's a very time-consuming job but one you will never regret. I wish the best for your dad and stay in touch because we care :)

Hugs,

Post Edited (Mae be here) : 9/3/2013 2:07:20 PM (GMT-6)

Posted 9/3/2013 9:37 PM (GMT 0)
Thanks for the support guys. It helps me stay positive and in turn I pass that on to my dad. I also keep telling him that he is not done. That he has many years left. And if he does the right things this could be true.

As for the other hospital, I want to see what this one says first. What type of guidance we get.
Posted 9/5/2013 3:48 PM (GMT 0)
Hi all,

So my dad got some news yesterday so I wanted to post an update. His Primary care doctor called him with the results of the MRI and said there was nothing abnormal found (Apart from the Cirrhosis of course)

Needless to say when I found out I was SO happy as I understand this was to check if the tumors were cancerous. I know there is still a lot to get through but this made me feel great and as if it was a small victory for now. I stopped to visit my dad and for once in the past several weeks he smiled and joked with me. He tried to pretend it was no big deal because "He still has Cirrhosis" but I could tell he was happy/relieved for now.

My mother was also happy and it was nice seeing both of them smiling which has been difficult recently. My father even got up to cook for everyone! Lol. He is eating healthier, less salt and spices (which he loves), and no drinking. He is actually looking better physically in my eyes.

Also, his urine is not as dark anymore despite his bilirubin being so high. So I can only imagine where it was a month ago.

I did have a questions, with the results of the MRI back, what exactly do they check with the CT scan? As we still haven't heard on that yet but will next week at his next appointment with the Hepatologist.

 

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