I'm so lost and need some answers to cope

Hi everyone,

I am new to this board and as you all know, no one comes looking for answers when things are good. Sadly...I am no exception. I'm a sad son that is learning that his father is at end stage cirrhosis. I am so broken that I have no idea how to cope. I'm at the age where I am planning to buy a home, get married and start a family. My father is like my best friend and now this has hit my family and I. We are devastated. I keep thinking of how he will miss seeing what a great man I will be. How he won't be able to play with my kids, come to my house for a birthday party. It is so hard. He has been at the hospital since Thursday night and I have literally cried myself to sleep every day. I can't function at work and I hold a very important position. I am a wreck as I am a very logical person and know at this stage it is only a matter of time....

On to the background...my dad has been a drinker for years. He is 62 and has had his daily drinks but never a drunk. That is what makes this sad...but nevertheless his consistent habit has brought it to this. For months now we started seeing his skin and eyes yellowing which we knew was bad but he is so full of pride he never went to a doctor. about 2 weeks ago his feet started swelling and finally this week the bloating in his stomach got painful which finally prompted him to the doctor where he was immediately sent to the ER.

Once there they did bloodwork and an ultrasound. Along with the symptoms the doctor told him he was almost certain it was cirrhosis. However, they said they need more tests to determine the cause and that it is alarming how fast it is progressing. They also said his liver is completely covered with cysts so they are doing a biopsy to determine if it is cancer.

He has no blood in his stool nor cough yet but is taking iron pills as he has some internal bleeding and that is what they are trying to find as well.

Since being in the hospital his swelling has stopped and he is in all his senses but he is a very intelligent and logical man and knows what cirrhosis is and what the outcome will be.

We are so devastated right now and I am trying to stay positive but it is hard when everywhere I read his chances are slim to none at this point. I know it is hard to put a time frame on things but I wish I knew how long he has so I can take as much advantage of that time as possible. My only prayer now is that he can at least come home and rest there. I am not sure if this is a week, month, year...I just don't know.

Today they are doing a colonoscopy and they he will be transferred to a specialist for a biopsy to see if the cysts are cancerous. As if the cirrhosis itself isn't bad enough now he might have cancer too?

I'm not sure if I'm looking for advice, support, a string of hope from a success story...but anything from real people will help instead of medical "you will be dead in 6 months to 2 years"

Thank You

Hep93,

Thanks so much for the quick response. It is truly appreciated. I also questioned the iron pills as I know it can't be helpful but apparently he is so anemic that they are requiring 3 a day. I will ask about this. He is in a general care and not a specialist yet. They did drain his belly for relief on Friday (first day he was there) but haven't since. They mentioned they try not to do so to avoid any infections.

I feel so bad for him. They come in every few hours to draw blood...check his sugar levels (he is diabetic as well)

He seems so defeated. Last night he wanted to go over "final decisions" which I refuse to do right now. It is not the time. I know you said it is not a death sentence but when I look at the doctors faces...I lose hope. My father doesn't seem like he is extremely terrible. He still has conversations with us, jokes around (Which is what I will miss the most) he is such a great man that helped his whole family be where they are (Oldest of 9 siblings) and when his dad passed away my father took the role. Then he got my siblings and I threw college. He has certainly touched so many people and we try to motivate him with this. But he says he wishes he could go back but knows that cirrhosis is deadly.

It didn't help when the doctor told him that the liver had even started to shrivel up from not functioning properly.

As for a transplant, being 62 and all the other medical issues he has I am doubtful he would be a candidate which is frustrating to me, because who determines whose life is more valuable. I am a registered organ donor because I would want to help someone in my situation one day.

But the reality is looking grim. Thanks for the advice and I will read as much as possible to ask the doctors.

I will do all in my power for my father to not drink anymore and eat healthier. I just hope we have the luxury to do so for years to come and not months.

I am a huge believe in the Lord but am not very religious but I pray to the best of my abilities as I know God makes the ultimate decision. But science will always have it's say as well...

A.Ziffle, thank you so much. I can tell I will be on this board a lot as you all see very helpful and knowledgeable. Reading the 2 replies I've gotten so far have given me the most hope I've had in the past week.

How long has it been since you got diagnosed with your level of alcoholic cirrhosis? Also, how old are you (If you don't mind me asking) Apart from the initial Paracentesis he has not been given diuretics. They say they are still "evaluating". His bloating (fluid retention) has gone down but still very apparent. They said they would put him on diuretics and it would take months to work. I was happy hearing months as it's a sign he might have time! As for the alcohol I will make it a mission in my life to make sure he cuts that out of HIS life.

Is it realistic to think he could still be around for several years?

Finally, at this point in the process as a son what questions should I ask the doctors? What are some things that I need to know and more importantly ask for my dad?

Thanks again

Post Edited (lostson) : 8/5/2013 2:13:19 PM (GMT-6)

Get your dad to a hepatologist ASAP. Very few docs know how to handle liver problems, even GIs. You father could live a long time, if he (and you) do the right things. You do need to be on record as his medical proxy and have power of attorney, in case something happens suddenly and he is unable to make decisions. Talk to him and be sure you know his wishes. I'll repeat, get him to a hepatologist, that's the most important thing.

Thanks again guys, he is getting a biopsy done later this week when he gets transferred. I will ask today when I go visit him if he is going to see a Hepatologist at the following hospital. I am glad that I am learning a lot here. Before I did research I had no idea whatsoever what was going on or what to ask. And when you see someone you love getting poked and probed and given this and that to drink...you feel bad that you don't know how to help...

I will say it scary that he is in the care of people that might be doing more bad than good. Part of the problem is that being in the hospital it is hard to get answers...Doctors rarely come in and nurses just do their day to day tasks. That is why hearing all this is a shock.

I just always assumed his doctors knew what was going on. Regardless, from this point on I will seek a Hepatologist and schedule an appointment when he is released. Until then I will be more vocal and get answers. Based on what they tell me, I will visit the board and hopefully you guys can steer me the right way.

When they do the biopsy for the cysts...I hope it isn't cancer or else we are facing a whole different scenario...

Hi Lostson,

I am very sorry to hear about your Dad and the awful time you are having at the moment. I will start of by echoing everything that Ziff, Connie and David have said - they are all experts in liver disease, having been through the mill more than most.

I wonder if the reason that they are holding off with the diuretics is because they are a little worried too about his kidney function? It is of vital importance at this stage of decompensation (the temporary state of acute-on-chronic illness) that he is experiencing at the moment, that the doctors don't precipitate hepatorenal syndrome, either by prescribing drugs that are nephrotoxic, or by causing fluid shifts through diuresis which the kidneys struggle to cope with. When they said that the diuretics would take months to work, I suspect that they were indicating that it might take months of diuresis to deal with the current ascitic build up, which is why they opted for paracentesis straight off. You're right that they have to be careful about preventing infection. Specifically, they want to avoid spontaneous bacterial peritonitis, which is infection of the ascites and which can be very dangerous indeed. Also, in end-stage liver disease, the body's ability to make blood clot becomes impaired and they frequently avoid parecentesis without first considering giving fresh frozen plasma or platelets to help with the clotting.

It sounds as though your father does not have any of the signs of hepatic encephalopathy yet, which is good, although it would be useful to check that his liver is indeed producing urea. Is he eating / has he been eating well? If he stopped eating as much recently (as often happens with alcoholic liver disease) it could actually be this that precipitated his ascites through a lower albumin count and it might also explain the lack of HE. Albumin is a plasma-expanding protein which reinforces impermeability keeping fluid within the vasculature. When supplies are low, and there is a sufficient portal pressure, fluid is forced into the extravascular space as ascites. A similar process occurs in the extremities.

You mentioned that his jaundice has been increasing over months, but you don't describe him as being shockingly yellow, as so many people do who are unfamiliar with this disease. It does make me wonder if his jaundice is relatively mild, indicating a lower bilirubin.

From what you describe, your Father's liver disease although serious and certainly decompensated end-stage does not sound as serious as it could be. With some serious lifestyle changes and the right treatment NOW by a hepatologist he could very easily have years to look forward to. And that's before even considering the possibility of a transplant. I COMPLETELY agree that he must see a HEPATOLOGIST and quickly. Gastroenterologists are hopeless at understanding the way that the liver interferes with systems beyond the GI.

If I were you at this stage I'd be asking what his Bilirubin, Albumin, AST and ALT levels are. I would also be asking about an OGD (upper endoscopy) to rule out varices. You mention that he has no blood in his stools - is this upon a visual inspection or with a faecal occult test?

As to the blood, it sounds as though he may have a concurrent microcytic anaemia. This is not to be confused with the macrocytic/haemolytic anaemia that alcoholics normally get. His mean corpuscular volume will provide an indication. If so, it may treating separately. Of course he could have both, particularly given that the ascites would indicate a portal hypertension that could put him at risk of hypersplenism secondary to hepatosplenomegaly. It is odd that they haven't transfused him, though. This would be the normal treatment to bring his Hb up. I presume that your Father would not object to a blood transfusion? Sometimes they are careful not to transfuse if it will increase the likelihood of a hypovolaemic heamorrage (for example in the case of Grade III varices which have yet to rupture).

I am a lot younger than your Dad but also have liver disease due to alcohol abuse. When I was admitted to hospital earlier this year, I had severe ascites, acute hepatitis, a low Hb and later on bleeding varices. 7 months later, having stopped drinking I have normal liver function tests, no ascites and have got rid of the varices. Like Ziff I am not nearly high enough on the MELD score to be even considered for transplant. When hospitalised, I was told that four out of ten people in my situation die within 30 days. Now, I have been told that I can expect a near-normal life expectancy if I continue looking after myself. I sincerely hope that this gives you some hope.

I wholeheartedly salute you and take my hat off to you for the way in which you are supporting you Dad, and trying to find out what you can. It will make all the difference to him. He clearly loves his family a great deal and we can only hope that this love will help him get through the changes he needs to make to make a difference to his prognosis.

Very best wishes,

Jamie (one of the resident UK-dwellers).

Post Edited (NicechapLondon) : 8/5/2013 5:46:54 PM (GMT-6)

It was for me. The gastroenterologists (GI doctors) wanted to get me stable before referring me to hepatology, which they were only willing to do if I stopped drinking. Thankfully, by this point, drinking was the last thing on my mind. They will want to check his electrolytes for a couple of days after the paracentesis as this can play havoc with them because of fluid shifting, and checking the renal function is important too. Also, a period of convalescence will allow them to observe him, keep an eye on his diet and give them an indication of where he is at with his liver.

The low Hb is worrying, but it is not the first time I have heard of it with no sign of varices or other major source of bleed. If his INR is somewhere above 1.7, he could be having lots of little bleeds which in their totality cause significant loss. Did his endoscopy show any portal hypertensive gastropathy? I had thought that the low blood count might be due to the spleen but, given that he doesn't have any varices, this is unlikely. Splenomegaly and varices go hand in hand as they have the same root cause pathology. I just can't understand why they haven't transfused him already, unless they are still waiting for blood films and have an inkling that there may be some other kind of haematological issue. Is your Father caucasian or does he have some other kind of ethnic background? I'm wondering if something like sickle-cell trait might be at play. I'm really not sure about that iron. The liver hates it. I would guess that your Father's ferritin levels are already through the roof but they won't have tested for them because they don't know to. In all honesty, I think I'd ask them to quit giving him iron and to simply transfuse him. Perhaps you could offer to donate blood to the bank?

In all honesty, it sounds like getting released from that hospital will be good for him in the long run. Providing that he sees a hepatologist immediately. If you do get sight of any of those lab results I mentioned, we would be able to give you some next steps in terms of what to expect / questions to ask but at this stage there are a number of possibilities.

By far and away the two most important things in terms of getting him back to relative health will be abstinence from alcohol, and nutrition. The former should not be underestimated in terms of its difficulty. Many liver patients get a little bit better and think that it's ok to drink again. Others give up all hope, thinking that the damage is already done and justify their continued drinking that way. One thing is certain: IF HE CONTINUES TO DRINK ALCOHOL, HE WILL DIE A VERY EARLY DEATH AND IT WILL BE PROBABLY THE MOST UNPLEASANT END YOU COULD IMAGINE. Unfortunately, that's the reality. The non-mortal way out of liver disease is ugly and I wouldn't wish it on my worst enemy. Your Dad will need a lot of counselling and help to steer clear of the 'demon nectar'. Nutrition is just as important. Any portion of your Dad's liver that is left unscarred will almost certainly be inflamed and will require protein to repair itself. An adequate intake of this together with carbs, vitamins and minerals is very important. Having liver disease messes up the body's ability to metabolise and store fat properly. For this reason, it is important to supply the body with energy as and when it is required. Liver patients are often told to eat as a minimum 50g of Carbohydrates before bed-time to allow the overnight repair to avail of sufficient energy. Certain foods are easier to digest than others. Chicken and fish are excellent. Beef is one to stay away from. If your Father struggles to eat at all upon discharge from hospital, they can (or at least here they can) prescribe supplement drinks that will give him everything he needs. Drinking plenty of milk will ensure a good supply of protein.

Remember with his increased protein intake to look out for signs of hepatic encephalopathy. In your Father's case it sounds like his portal hypertension might be mild and you may find that he (like me) is lucky enough to escape this, but it is most important to keep an eye on it because left untreated it can lead to coma.

It is encouraging that his results have improved after just five days. I'm sure that with your support you can almost certainly get him to where he needs to be.

Next steps:

- see if you can get hold of / post lab results
- question again the iron supplements. Check to see if they have tested his ferritin.
- offer to give blood and request an early transfusion
- let us know how he gets on over the next couple of days

Best Wishes,

Jamie.

Post Edited (NicechapLondon) : 8/6/2013 2:53:01 AM (GMT-6)

I sure will keep you posted. This morning he got a blood transfusion. I know it is bad that he needs one, but after reading your post I guess it is a good thing he got it. They currently are checking his urine sample to check his kidney functions. His urine still looks very dark. Not quite coke color but brown...

A doctor also told him he would get him scheduled with a Hepatologist soon. Apparently the hospital admits people if there is space. They feel they can get him in.

I questioned the iron pills and they assured me it will not hurt the liver much, but rather irritate the stomach.

I will see if I can get my hands on the results. do they provide them upon asking?

I'll update later when I go for my visit. Thanks

The brown urine is a normal sign of liver disease and not necessarily specific to any renal problem. As his bilirubin improves, so too should his urine unless these is a kidney issue. His ankles may give you an insight into his kidney function - if the swelling is decreasing it is a good sign that his kidneys are working.

I'm starting to think that perhaps his ferritin levels have been shown to be low and that in actual fact he has iron deficiency anaemia. The transfusion will help but perhaps giving iron is a trade off between preventing hypoxia and fatigue (which will inhibit his recovery) and over-perfusing him. All of these things are huge balancing acts in liver patients, but the liver should be the central focus, rather than the haematology, which is why it is so important that he sees the hepatologist (you must be getting tired of that word by now!)

Your Father is able to request his blood results, and they should simply read them out to him for you to write down, if necessary.

Hi all, so wanted to follow up on what has happened so far. Last night my father was released. After the blood transfusion they let him rest, have dinner, then checked his blood levels before being released. It was at 8.8 when he walked out. He was prescribed diuretics for his belly (fluid build-up) and again...iron pills. He was also given an appointment with the Hepatologist for today.

This morning we went to his appointment with the hepatologist. Basically she told us based off the tests done he has stage 4 cirrhosis but that he is doing "not too bad" Meaning there were varicies but no ruptures (which is why the endoscopy and colonoscopy were promising). They said that there was no need for a biopsy because it isn't always needed and that they "tumors/cysts" needed to be evaluated from his Catscan. They also said based on his blood work his liver despite the cirrhosis was not what they would consider "dire need"

He was told to continue taking his diuretics, NO ALCOHOL, eat a low salt diet and drink plenty of fluids. He was then told to come back in a month.

We briefly talked about transplant and the doctor said..."If things get worse we can start looking into that but we are talking down the line...let's see how things go these next few months." She talked about how they do the MELD score and as it stands my father would be low on that list right now (Not sure if that is good or bad).

I asked about his prognosis, she stated "Oh the way he is, he has over 85% chance to survive the year. His non-survival rate at this point is low."

I don't know what to make of all this. On one hand I am happy, but on the other they didn't seem very concerned nor aggressive...is there something I am missing here? No biopsy needed, take diuretics, no alcohol, come back in a month...that was it.

Oh they did also draw blood to test for Hepatitis. That was it. Btw, I asked about the iron pills and was assured by the Hepatalogist he needs them as he is very iron deficient and they are not harmful to the liver overall. The people were nice but I was not happy at how they seemed like "big wigs" that know it all. Very casual and there was 2 students there training I guess (University Hospital)

On another note, I didn't like when he was in the hospital they gave good advice. When he felt pain they said he could take advil...I advised him against any unnecessary pain medication.

As for eating he was told he could eat meat and pretty much anything just to watch the salt intake. And obviously for other reasons not just cirrhosis a healthy diet.

From being on this board, I feel I asked a lot of great questions and it was so refreshing to know what was going on. So thank you all for that. But on another note, I feel I didn't know, do, nor ask enough.

What should I make of all of this?

What I get from all this is that they are going to see how your dad does without further intervention over the next month.

The MELD (Model for End-stage Liver Disease) is UNOS' (United Network of Organ Sharing) way of determining who should be evaluated for transplant and their placement on the transplant list. This is calculated with INR, bilirubin, and INR. If you get those results, you can calculate it yourself on Mayo's MELD calculator: http://www.mayoclinic.org/meld/mayomodel6.html The lower the score, the lower one is on the list (if on there at all.) And the higher the score is, the sicker the patient is and the closer to transplant. Most centers transplant between 25 and 35. I was transplanted at Mayo FL with a MELD of 25. I had been a 12 or 15 when a tumor was detected. I was automatically jumped to a 22. After 3 mos. on the waiting list, I earned another 3 points and went to a 25, receiving my TP shortly after that.

Hopefully, your dad will see improvement over the next month and not require a transplant for some time to come, if ever.

Hugs,
Connie

I read somewhere that 85% of people die within 5 years of diagnosis which the median being 1-2. That really freaked me out. My life was in shambles for the past week. If that were true I don't know how doctors could be so nonchalant about it all. But as I said the Hepatologist made us feel as though he just needed to take care of things for now and go from there...didn't seem like the response to give someone that would only have a year left. I'd imagine things would move quicker. So I guess I felt better after that.

Currently my father still has pain in his belly from the fluid build up. Hopefully the diuretics help out and the swelling doesn't return. He still looks very weak and the jaundice is still there. He lost 6 pounds while in the hospital and about 17 in the past 3 weeks since he really got sick.

His legs are no longer swollen though, that immediately went away in his first day at the hospital. I take that as a great sign.

Despite his swollen belly, skinny legs, yellow skin and nausea, he is up and about on his own with little help. Hope the healing is in the works...

LS, sometimes I think these docs want to see if a patient is "serious" about their desire to live. They take a look month to month and see if the person stays clean and sober, follows the diet, complies with the med regimen, etc.

If things start to go downhill, there are things to DO. Right now, he needs rest, no alcohol, low sodium diet, and easy to digest proteins. Lots of fluids and more rest.

BTW, however this turns out, YOU have to be okay. He needs you...

Best,
Mama Lama