More problems...Less Answers...starting to lose it...

Hi all, sorry to start yet another thread but I wanted to post an update. I decided to start a new thread instead of posting on the other because I feel I have a new concern that might change how things are approached.

Well to summarize my father had been hospitalized for days after his stomach was in serious pain and had swelled (Now know due to water retention) He had all the classic signs of cirrhosis (Jaundice, brown urine, loss of appetite, etc.) Sure enough he was diagnosed during his hospitalization. He was then directed to a Hepatologist for further evaluation on his tests.

Fast forward to last week, he went to a follow up appointment with his primary to "receive the results" from the hospital. While he was there they did an ultrasound and Catscan to look at his condition. Upon review they discovered his liver was covered with tumors.

When he went to the Hepatologist they told him they would review his blood work and images from the tests to look into his liver condition and what the causes were. So there was no biopsy done at that time.

Well when he went back to his Primary expecting to find results of the "tumors" (Again the fear being that he has cancer) all he was told was that they still did not have a clear answer for him. The hospital was not done reviewing things and did not yet know if the tumors were cancer or not.

Needless to say we were all frustrated and very scared. It seems from the doctors reaction and talk, that cirrhosis is at the moment the least of his worries. He was telling my parents to stay strong and positive no matter what the outcome may be.

On my end I am now terrified that he has cancer in his liver which obviously really diminishes things including my ultimate faith and hope that he can survive this.

Since he has been home he is eating well, not drinking any more at all, not working, and resting a lot. However, he has lost a lot of weight (around 10 pounds) and he gets tired quite quickly. He is taking the diuretics that I know could cause some weight loss but I would think that is just in his stomach. His entire body is looking very thin.

His pants are now falling off of him and in general he looks very weak. He isn't as "yellow" but as I said he is looking weak and continuing to slim down.

My mother is at the point of breaking down because although she knew he was sick, the word cancer terrifies her and suddenly she went from hopeful and having a lot of faith, to crying almost anytime someone asks about my fathers health.

I try to pretend that Cancer is not an option, but I am fearing that it very well might be. To the point that my life has gone from hopeful to hopeless. I know I will take a lot of heat for this...but I must admit have spent the last few days drinking (I know I know) completely stupid but that is how depressed and irrational I am thinking at the moment.

Even my employers who know the situation are saying "is he going through chemo?" I haven't even told them this! But they assume do to their knowledge and the symptoms.

So at this point I don't know what to do besides trust the doctors and keep "waiting" He has to go back on Friday for an exam and if that doesn't give needed info, I'd imagine a biopsy is next.

This is all really new to me and I don't know if I am right to assume the worse so I can begin to cope. I know my father and he is a strong man. But even I know cancer will make him stop fighting.

So lost...

Thanks Mae, My mother is making sure that his nutrition is good. She is making fresh veggies and fruits for him all the time. Low sodium as well. His appetite has been what I would call decent. He is eating fairly well. But the muscle deterioration continues. Are you saying that is common with Cirrhosis or with Hepatic cancer?

I also trust that the doctor knows what she is doing. I question the biopsy too but she explained it wasn't always needed and wanted to make sure first before doing so. Makes sense but if someone has so many tumors why wait?

I think until we know for sure one way or the other we really won't be at rest. My father is almost certain it's cancer and is waiving the white flag. We try to keep him positive but even for us it is getting to be too painful.

Maybe I am reading too much into things but it seems like the doctors know it is cancer but won't tell us just yet until they are "covered by actual documents" But as the saying goes...if it looks like a duck...

We are not too far from a major transplant center. As soon as we know what exactly we are up against I will make contact and see what options we may have.

He is currently still taking the iron but not the advil. He is holding off as much as possible.

Sorry for adding another post. I promise I will keep everything on this one now!

John

The muscle wasting is common with cirrhosis but sarcopenia, a low muscle index, has a mortality rate of 19 months -+ 6 months according to one study and 34 months for cirrhotics with no sarcopenia. Have you got some weights he can start lifting at home? They say it can slow the progression of muscle-wasting.

Anyway, I'm hoping that the tumors are just pesky nodules and will not affect his chances for transplant. I don't recall hearing of anyone with that many tumors so hopefully folks more learned will chime in to help with that question.

I don't think the doc is keeping bad news from you. They need more info before they can pinpoint what it is, so meanwhile try to relax and get dad pumping iron :)

My post crossed with David and he makes a good point. Why not go to a hep doc at the TP center and get your answer to the tumor mystery.

Okay Alex it is, LoL

Well dad may be In early stages and may never get sarcopenia. So I would tell dad you want to pump a little iron with him, get off his duff and fight this bad boy! Mom could help by taking daily walks with him too!

Alex, a biopsy is not needed to determine if growths are cancerous. Your dad can have an MRI with Gadolinium contrast. If he has cancer, the growths will "light up like a Christmas tree." I've had hepatocellular carcinoma twice and I'm still here. The first time, Shands gave me no hope whatsoever, the tumor was so huge. I went to Mayo and they saved my life--twice. The first time, they shrunk the tumor, killed it, and removed the entire rt. lobe. The second time I developed HCC, it required a transplant.

So make contact with a transplant center right away. It will take awhile to get copies of his records and an intake appt., also. And find out what insurance plans they accept.

Lab results can also give an indication of cancer. If his liver enzymes and bilirubin are climbing, and especially his AFP, it's a pretty good sign that he has cancer. I never had biopsies to diagnosis liver cancer. I had them after transplant.

Regarding transplant, though, your dad hasn't been sober very long. Most places require 6 mos. of DOCUMENTED sobriety in AA or in approved counseling sessions, to be eligible. Prior to transplant, he would undergo an intensive pre-transplant evaluation. He must be sick enough for TP, but well enough to survive surgery.

The good news is that IF he has HCC, it would boost his MELD to 22 (or higher if his MELD is already high.)

So:

1. Contact the nearest large TP Center/Hospital.

2. Try to get his lab results so you can calculate his MELD score (I'll give you the link when you have them.) All you need are the creatinine, bili, and INR.

3. Just as soon as he is strong enough, get him to his first AA meeting...go with him. It couldn't hurt you, either. On that front, no excuses...stop drinking. Did you ever think that if he smells it on you, it would tempt him to drink again?!! Also, everyone needs a clear head right now to deal with all the info and what is going on, to be able to make solid decisions and calm down. Right now, you are letting your emotions control you.

4. Again...calm down.

Hugs,
Connie

Mae, we did it again. GMTA!

Hugs,
Connie

Get the scoop about the tumors... and listen to Mae... find out..

Hugs :)

Alex, I just wanted to clarify a few things: If he has many, many growths, chances are it's not HCC...or maybe only a couple are cancerous. He really needs the MRI with contrast. Then you will know. If it's ascertained that he DOES have some HCC growths, the next thing is to determine the size. If in mm, they take a wait and watch approach. Once they hit 2 cm, they might want to plan on chemoembolization. No one tumor can be larger than 5 cm (cutoff is 5) for transplant, or a total of 5 cm for multiples. If approaching that number, or more than that number, they would do either chemoembolization, radiofrequency ablation, surgery, cryotherapy, or a combination of these. Regular systemic chemo does not work for liver cancer. It has to be targeted to the tumor(s.)

There are more success stories here re: HCC than not. So please stay positive. Take a cue from your dad.

Hugs,
Connie

Hi Alex,
I am Emma, wife of Dougie. I was out of town when you introduced yourself to the forum. I am still catching up on old posts.
My husband was dx with cirrhosis in September 2010. He was 61 at the time. Near the same age as your dad. He does not have hep C. His liver disease is due to alcohol. He was able to stop and he has regained some really good health these last almost 3 years. Currently he has had a relapse, started going to AA and now is 16 days sober.
We are also dealing with the shame issues.
I will continue to read your posts to learn about you and your dad. The others here I am sure have given you much information, support, and hope.
A late welcome from me.
Keeping you and all on the forum in my prayers.
Emma

Well said Ziff.

Dougie too, was able to do as you did. Work hard, play hard, party hard. No sick days or missed work. Then BAM! Yellow skin, eyes, sick, sick, sick. He has regained health with making lifestyle changes. As you know, he is in a rough patch right now. He is working through it and will need to acquire a taste for crow.

"There is no pride in dying needlessly." Thank you for that. This is the best thing I have heard in a long while.

Alex-more wise words that you can share with your dad. I also highly recommend Al Anon for you. I have been attending for the last 15 months and it has helped me tremendously.

Emma

Thank you Ziff. I think we will work through this. Just taking it a day at a time. I appreciate your thoughts.

But this is Alex's post...

Alex,

I was reading your posts about your dad. Everyone has been giving you good information, but I would like to share a few things about my husband's journey with cirrhosis, as he was just a year younger than your dad when dx.

As I mentioned earlier, Dougie's cirrhosis is due to alcohol. He had been a drinker his whole adult life. Not a bum drunk. Functioning. Family, job, etc. No sick days, no missed work, no passing out, etc... Just a party guy. Work hard, play hard, party hard. Don't know how or when it happened, but over the years he drank more and more...chasing the buzz...the good feelings. Somewhere along the way, he hurt his liver.

His first symptoms were sleep disturbances. He would get up in the middle of the night and couldn't go back to sleep. So he would have a drink at 2am, alone. Then he was gagging in the morning. This became more frequent, for longer periods of time, and then throughout the day. These gagging episodes would leave him shaking and exhausted. He would have frequent bloody noses. Over time they too became more frequent and took a long time to stop. He developed man boobs. He lost hair on his lower legs. His urine turned an orangish color. He would have entire days where he was just exhausted and unable to get out of bed. He would get so tired that sometimes he would need to just go take a nap. Finally, his eyes and skin turned yellow. It was after about 2 months or so from the onset of the jaundice that he finally (after lots of begging from me) to go see a doctor.

He got worse before he started to get better. His second set of labs which were 4 days after his first set were significantly worse. His first visit with the GI doctor he was told the most important thing he could do for his health was to NEVER drink again. Second, if he ever begins to vomit blood, call 911. This is a medical emergency and there is a 50% chance of bleeding to death.

So, he went of a home detox. In bed for a week. Taking some sort of sedative that I can't remember the name of. He was asleep most of that week. He needed assistance getting in and out of bed, getting to the bathroom, feeding himself. He would drip urine all over the toilet and bathroom rugs. He was slow thinking. He was cold all the time. He couldn't even slip his foot into flip flops. He needed help. He couldn't aim straight to get the yogurt spoon to his mouth. He was slow moving...so the dog would sit real close to him on the couch and steal food from his plate. He couldn't remember how to work the remote control. He lost weight. about 25 pounds in 2 months.

His next appt with the GI was a week after the first. And more labs. Tiny improvements. So the next appt was in 2 weeks...then one month...then 2...etc, until his appts are now every 6 months.

There is hope for your dad. With NO ALCOHOL and a good diet and lifestyle change. He can improve. It will be slow. There might be one step forward, two back...but he can improve.

I understand the deep fear you are experiencing. I went through that too. You mentioned in an early post the fear of him not being there for your children and other life events. I get it. I was so sad about not being old with my husband, not seeing our kids graduate college, marry, etc. As your dad improves, these feelings of fear will lift too. Take deep breaths. Do the best you can in the moment. Remember as the others have advised to take care of yourself. Your parents are very lucky to have a loving son as yourself to be available to them in this health crisis.

As Ziff was saying in a earlier post, it is time to set pride aside. Ask for what you need. Push to the front of the line. Fight for life.

Keep posting to let us know how things are going.

Emma

Hi Emma, It is a pleasure and thank you for sharing your experience with me. It sure is a similar situation that my father is going through at the moment. He just turned 62 so right at the same age as your husband. I am very sorry to hear of all you went through. It really seems like he had a very rough time.

When my father first started showing symptoms (yellowing eyes and skin, bloody nose, orange color urine) I heard it from my Mother. We would try to convince him to go to see a doctor but to no avail. Also, I think to a point we were all in denial and wanted to pretend there was nothing wrong. As long as he was up and about and working we tried to just wish it away. Well with time that was no longer an option.

The yellowing got worse, urine darker, and finally his legs started swelling. A few days later his belly got swollen to the point of pain. Eventually that is what led him to the ER and here we are weeks later...when I read what happened to your husband I almost sit and wonder how I would have felt seeing my dad that way. It truly is tough and it is a good thing you were by his side.

My father is home now and has been for 2 weeks now. I just stopped over to see how he was doing and have dinner with him.

He is looking better in my eyes. Not as yellow anymore, he is eating better than he had before his hospitaliztion. He is in all his right senses and is up and walking around. So I was glad to see that. However, I did see him and my mother just sitting on the porch is deep thought...as if they were sad to realize that what is happening is real.

My father looked sad but at the same time he is going about his daily routines like usual. His friend even came over and they were talking as if nothing is out of the ordinary. I think that really helped him out.

I really appreciate the advice you gave and reading the story gives me hope that even though it is a long battle that maybe my father can live passed the "Average prognosis"

I have heard about the nutritional drinks from everyone here on the forum and brought some over today. Thank you all for that and hope he can get that in his system.

It is truly amazing how you meet great people willing to help out (this forum) sadly it takes these circumstances to realize it. But it really is a blessing and I appreciate everyone that has taken times out of their lives to chime in and help answer questions while sharing encouraging views.