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Avatar universal

What to expect

My husband has stage 3/4 liver disease. He has HEP C, does not drink or do drugs, and has a very healthy diet with NO sodium. He has a tumor on his liver and his spleen is enlarged. I can see that he is declining quickly and his symptoms are getting worse by the day. His MELD is only 14 but he is sleeping more and has increased pain. We are waiting to be put on the transplant list and the doctor says all we can do now is wait. The next ultrasound is scheuled in 6 months when they will re-evaluate him. I think the fear of the unknown is the worst. I'd like to wrap my arms around it so there is no more unknown. Can anyone give me an idea of what's ahead?
10 Responses
446474 tn?1446351282
Hi.

I have never heard of a doctor saying to someone who is in pain "nothing can be done'. That simply is not true. For people with liver disease there is more risk involved because pain meds pass through the liver and can potentially harm it.

If your husband is progressively getting worst instead of waiting 6 months I would seek a second opinion. As I have already mentioned there are a number of things that can be done to improve his symptoms and make him more comfortable. For your husband to go through needless suffering makes no sense. There is enough suffering as the disease progresses there is no reason to add to it.

Is the doctor that you are talking about ' the doctor was not alarmed and said it's nothing to worry about' 'two years ago the doctor said all would be fine for many years to come' a gastroenterologist or is this a hepatologist at the transplant center? A gastroenterologist is not qualified to treat a patient with cirrhosis. Only a hepatologist at a transplant center should be treating your husband. If this is a hepatologist. I will think about changing doctors now while things are not as critical. There doesn't seem to be a level of trust between you and the doctor. Cirrhosis of the liver and a liver transplant are potentially fatal. The question I would ask myself is if it comes down to a life and death decision would you trust that the doctor is doing everything possible to keep your husband alive and communicate to both of you exactly what is going on and what the risk are. If you can't say I trust the doctor with my husband's life then get another doctor. The relationship between doctor and patient when someone has a potential fatal condition is critical. There will be many ups and downs and without a doctor to really on for medical expertise this process can be more of a hell than it already is. I base this on my own experience and all of my friends that have gotten transplants or are waiting for a liver transplant.

In the doctor's defense...no one can predict how any individual's liver disease will progress. It is not a linear process. I decompensated literally over night after an operation. The anesthesia cause me to decompensate and develop ascites and hepatic encephalopathy within a few days after the operation. And of course when I was diagnosed with HCC (liver cancer) after an MRI scan that changed everything.As I am more likely to die from cancer before my liver ever fails. My blood score MELD is 13. Similar to your husband. But with my cancer exceptions points I now have a MELD score of 28 but will need a MELD score of 34 or higher to get a transplant here in North California where we have the longest wait times in the country.


His spleen is enlarged to the degree that it's pushing against his Diaphragm and making it difficult for him to breath. I think it may also be pressing against his stomach as the Technician that was looking at it was pretty alarmed. However, the doctor was not alarmed and said it's nothing to worry about. It's become very clear that we are only in the begining stages of this. What was so alarming to me was that two years ago the doctor said all would be fine for many years to come. It advanced so quickly so it took me off guard, or at least quicker than the doctor had lead us to believe.

Do you know the size of your husband's spleen?
An enlarged spleen measures about 12 to 20 cm (4.5 to 8 inches) in any dimension while a spleen greater than 20 cm (8 inches) is considered severe enlargement.

Do you know if your husband's blood levels?
The enlarged spleen can also trap an excessive number of blood cells within it causing:
* Anemia (decreased numbers of red blood cells), which may lead to weakness, shortness of breath, and easy fatigue;
* Leukopenia (decreased white blood cells), which may lead to increased risk of infection
* Thrombocytopenia (decreased platelets), which may lead to infection or to bleeding problems.
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' What is an enlarged spleen?

The spleen is an organ located in the upper left quadrant of the abdomen just below the diaphragm and protected under the lower left ribs.

The spleen has a couple of important functions involving blood cells within the body.

It filters blood and removes old and damaged red blood cells, bacteria, and other particles as they pass through the maze of blood vessels within the spleen.
It produces lymphocytes, a type of white blood cell that produces antibodies and assists immune system.
The filtration system is part of the red pulp while the white pulp of the spleen contains the immune functioning cells

Normally, the spleen is a small organ about the size of a small fist or orange. Splenomegaly describes the situation where the spleen enlarges in size (spleen+megaly=enlargement).

* What are the symptoms of an enlarged spleen?

An enlarged spleen itself usually causes no symptoms; the symptoms of an underlying disease are often the reason a patient might seek care. These may include weakness and fatigue from anemia, easy bleeding from decreased platelets in the bloodstream, or recurrent infections from poor white blood cell function.

However, as the spleen enlarges, it can press up against the diaphragm, the muscle that separates the chest and abdominal spaces. Diaphragm irritation may refer pain to the left shoulder. An enlarged spleen also can push toward the stomach and cause anorexia or a loss of appetite and a sense of early fullness when eating.

Since the enlarged spleen grows beyond the protection of the ribcage it becomes more likely to be injured, thereby increasing the chance that abdominal pain may occur.'
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Let us know if anything new develops.
If your husband should have any unknown issues arise it is always best to go to the ER just to be safe as anybody with cirrhosis is prone to life-threatening complications.


Take care!

Hector
163305 tn?1333672171
I was in your husband's position a few years ago.
Besides a no salt, he should not eat red meat. Fish and tofu are good sources of protein for him. I'd suggest a mutli-vitamin without iron, to help fill his nutritional needs.
Try to encourage him to do whatever exercise that he can. Walk with him.
My sense of balance got kind of goofy. It helped me to have my husband's arm nearby.

We have a wonderful member here who is currently on the transplant list at UCSF. He is full of good information.
You can  a private message to HectorS or I'm sure he'll reply when he sees your post.

BTW: I had a transplant and recently completed hep C tx.
I feel good now but it took time.
Don't forget to take care of yourself, while you're caring for him.
446474 tn?1446351282
Hi.

I hope you don't mind if I ask a few questions to clarify your husbands situation.

You say your husband 'has a tumor on his liver'. Do you mean liver cancer?
Was he diagnosed at a transplant center.
Has he already been listed at the transplant center or is he waiting to get listed.
Otherwise know as HCC or Hepatocellular carcinoma (also called malignant hepatoma).
If this is the case then how large is the tumor?
Is this way he is waiting for 6 months? So the tumor grows so he can get cancer exception points instead of his current MELD score?
Can you describe the pain he has?

It is strange that they are look at his liver with an ultrasound because an ultrasound can't diagnose liver cancer.
It seems there is something missing here.

If you know any of the answers to the questions I have posted above let me know. I don't want to give you the wrong prognosis as to what will happen basic on a misunderstanding.

I have cirrhosis and liver cancer and am currently waiting for a transplant in 6-9 months just so you know I personally have gone through the whole process at least once.

Thank you.
I will let you know what you can except once I have some more information.

Hector
Avatar universal
Yes, he has a tumor on his liver. They have run blood tests and completed an MRI and at this point they are just watching it. They have not said it's cancer but I have an underlying feeling that they are leaving it and watching it so that we can get cancer exception points. I do feel they are waiting for it to grow which is why we are waiting 6months. Right now they are saying this "Stable 15mm hypoechoic lesion left lobe liver. Splenomegaly with mesenteric varices" He was diagnosed by his GI doc who is also a hepatologist. He is not currently listed, we are waiting. The pain he is having is in his upper left/center abdomen, just under his ribcage. He says it's a constant stabbing pain. Some days it's better than others. Today is a bad day, he is having the regular flu like symptoms in addition to the pain which is increased. He has all the other symptoms as well, confusion, fatigue, swelling, anxiety, weight loss, mood swings, and so many more. I guess I'm just trying to prepare for what's ahead assuming that his symptoms will get worse prior to transplant. I'd also like to know if there is something that can ease his pain and frustrations. I just want to make him feel better while taking care of him.
Avatar universal
Yes we have cut out all red meat and pork. We stick with tofu, chicken, turkey, fish and only fresh or frozen veggies/fruits. Everything is kinda bland but I do what I can to add flavor without the sodium. Sometimes it gets boring and we have to change up or he gets tired of it and just wants cereal. We really never go out to eat anymore and if by chance I talk him into a date night we only go to a place where we know the cook and whip up something special for him. He still trys to work because he has always been a work horse and he can't accept that things are changing. After about 3-4 hours his body can't take it anymore and shuts down. Because he does this he doesn't feel like walking, he just wants to sleep. Remembering or finding time for me is my biggest problem. I'm having to force myself at this point because disscouragement has set in and I'm fighting it. No one really understands what I see everyday and how much he has changed just in the last two months. Everyone just says I'm really sorry for ya'lls situation but that's all they have to offer, even his family. They don't understand, leaving me no one to talk to when things get rough. Trying to explain things is difficult because they really don't get it. They get upset with him because he doesn't remember important things they have told him even though I have said many times over, he is confused, it's not getting better it's getting worse, if it's important tell me. Often I feel that I'm just wasting my breath. Which is why I have found myself here. Right now I'm just hoping to plan for the future as much as I can in an effort to prepare both myself and our boys for what's ahead with daddy. I want to be ready for the worst case scenario so it doesn't catch me off guard. Does that make sense?
446474 tn?1446351282
Thank you for posting more details.

The 15mm lesion is too small to diagnose as HCC. Most lesions are benign so ‘wait and see’ is the only approach they can take right now. If it is HCC is has to grow to 2.0 cm or larger to get MELD cancer exception points. Hopefully it is not cancer. By the way a tumor implies cancer either primary of secondary. What your boyfriend has is a ‘lesion’ as you mention. A tumor is a lesion but not all lesions are tumors. The majority of lesions are benign. But since your boyfriend has advanced liver disease he has an increase risk for HCC so it is important to keep an eye on any potential growths.

An enlarged spleen (splenomegaly) is not a disease in itself but the result of cirrhosis which causes portal hypertension. Portal hypertension also causes varices.
Enlarged spleen sequesters platelets which is why cirrhotics have lower than normal platelet counts. This is usually the first sign of cirrhosis. An enlarged spleen can also destroy red blood cells and depletes stores of white blood cells.  
Bleeding from varices is a life-threatening complication of portal hypertension. Portal hypertension is an increase in the pressure within the portal vein (the vein that carries blood from the digestive organs to the liver) due to blockage of blood flow throughout the liver.
Mesenteric varices can cause lower gastrointestinal bleeding. The most common type of varices are esophageal varies which are located where the esophagus meets the stomach. When these burst a patient will vomit blood. In the case of mesenteric varices black, tarry or bloody stools are indications of bleeding of these veins. I either care the patient should be taken to the ER to stop the bleeding or they could bleed out.

“I'd also like to know if there is something that can ease his pain and frustrations. I just want to make him feel better while taking care of him.”

Of course each person's disease and how it manifests itself is different but there are a number of things that can be done as your husbands MELD score is rather low and a wait for transplant could take a long time.

First. Thank you for your explanation of the pain he is suffering from. “his upper left/center abdomen, just under his ribcage”. The ultrasound and MRI would have shown if there is a anatomical reason for the pain. Maybe his spleen is very enlarged and expanding into the stomach area? Do you know how enlarged it is? Has this been mentioned to the hepatologist?
There is no reason he should be suffering with pain. Have there given him and pain meds? Pain relievers can be a problem for person with advanced liver disease but if someone is suffering something should at least be tried. Using the drug only when the pain occurs is reasonable.

Let me comment on the symptoms he is experiencing.
* Fatigue is constant with advanced liver disease. Unfortunately there is really nothing that can be done. The best advice to for him to stay as active as he can. Walking any distant is something all of us need to do. Even if it is just one block. If I can’t do anything else I try to walk as far as I can ever day. The more we sit around the more our muscles atrophy from not being used and the harder it becomes to be active. It is an endless downward cycle.

* Confusion and mood swings are caused by Hepatic Encephalopathy (HE). HE is a brain disorder. Another complication of decompensated cirrhosis or End-Stage Liver Disease. Ammonia blood levels can sometimes but not always indicate HE.
HE is caused by the having a liver that is so damaged that it is unable to perform all of its functions properly. The liver filters toxins from the blood. So when we eat something as it is digested in the gut toxins are normally created. A healthy liver filters out the toxins from the blood that is coming from the gut with its nutrients. So strangely enough we are poisoning ourselves. Red meat gives off lots of toxins when it is digested. That is why persons with advanced cirrhosis should not eat red meat. It causes HE. Also constipation or infection will worsen HE.

The standard treatment is Lactulose (enough to have about 3 bowel moments per day) and Xifaxan. These two meds can make living with HE manageable. I have HE to one degree or another all the time but these drugs make it less severe.

Here are the grades of HE and its symptoms:

Grade 1:
Trivial lack of awareness
Euphoria or anxiety
Shortened attention span
Impaired performance of addition

Grade 2:
Lethargy or apathy
Minimal disorientation for time or place
Subtle personality change
Inappropriate behavior
Impaired performance of subtraction

Grade 3:
Somnolence to semi-stupor, but responsive to verbal stimuli
Confusion
Gross disorientation

Grade 4:
Coma (unresponsive to verbal or noxious stimuli)

If a person goes into a coma they need to be taken immediately to an ER.

* Swelling. When liver damage progresses to an advanced stage, fluid collects in the legs, called edema, and in the abdomen, called ascites. Ascites can lead to bacterial peritonitis, a serious infection.

A sodium-restricted diet (less then 2,000 mg per day), usually combined with drugs called diuretics (Spironolactone and Lasix), which make the kidneys excrete more water into the urine. These drugs can be given to reduce the swelling caused then the fluid leaks from the patient’s blood. Albumin is produced in the liver. It is usually low in patients with advanced cirrhosis and causes the leaking of fluids into the peritoneal cavity and the lower legs and feet.
If ascites makes breathing or eating difficult, the fluid may be removed through a needle inserted into the abdomen this is called paracentesis.
Again by the use of diuretics, swelling can usually be lessened of eliminated depending on how ill a patient is.

* Weight loss. Is called ‘muscle wasting’ in cirrhotics. Muscle wasting can result from the inability of the liver to metabolize proteins. Cirrhotics should have plenty of protein in their diet. Chicken, eggs, fish and vegetable proteins. It can help to eat small, frequent meals (four to seven times a day), including an evening snack. For patients that have issues with loss of appetite high-nutritional supplement drinks, such as Ensure can help a patient maintain proper protein levels.

* Anxiety. Learning that someone is suffering from a debilitating illness is difficult for anyone. That the disease will only get worse before a person gets a life saving transplant is a life changing event. No one has an easy time going through advanced liver disease. Psychologically this disease has many ups and downs. Confronting the possibility of death is not something any of us having been educated about. We each have to find our own path to finding inner hope and strength. It is a long process over many years. At first is especially difficult because it is all new. We have never imagined this could happen to us. There is a number of stages we must go through before we find peace. And even then there are always new challenges that will shake your hope and beliefs. There are no easy answers. The only way through is to take it one step at a time and do the best you can. In time you will realize you are stronger than you ever knew.

Best of luck to you both!

Hector








163305 tn?1333672171
Yes, yes, what you say does make sense to me.
Until very close to my transplant I didn't look so bad, just kind of drained and tired.
Because I had good days, and didn't sound so sick on the phone, nobody other than my husband really understood how sick I was. The people close to me might have noticed I didn't have much energy, slept more and seemed kind of silly, or rather sillier than usual.

If our livers were outside our bodies where people could literally  see our illness, they'd react differently.

I'm sure it is hard to find time for yourself. See if you can do something to help calm your mind, perhaps meditation, yoga or slow breathing exercises. Even if you do them for just a few minutes several times daily, it can help.

Wishing you the best of luck,
OH
446474 tn?1446351282
'No one really understands what I see everyday and how much he has changed just in the last two months. Everyone just says I'm really sorry for ya'lls situation but that's all they have to offer, even his family. They don't understand, leaving me no one to talk to when things get rough.'

I would highly recommend finding out if the transplant center has a support group for patients with liver disease or who are waiting for liver transplants. You can find the info on their web site or call the transplant center. It is important to meet others in the same boat so to speak. No one but someone who is either going through the same experience or who has been through the experience and has received a transplant can understand what you are going through.

Also for yourself you can meet other caregivers and see how they handle taking care of a person with advanced liver disease. It is a very important role. Without our caregivers none of us would make it though this disease.

Some of us also see therapists that are experience in dealing with serious illness and death issues. Talking about your fear of death is not something you can talk to friends or anyone else about. Unless they have had their own experience with it. With liver disease my opinion is that dealing with the psychological aspects are more difficult then the physical parts of the disease.
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Tips for Caregivers of People with Liver Disease
http://www.liverfoundation.org/patients/caregivers/

People with liver disease may need physical, emotional, and spiritual assistance. Often these needs are met by family members or friends.

Are You a Caregiver?

Caregivers for people with liver disease give help when it is needed. Most people who assist a family member or friend with liver disease do not think of themselves as caregivers. If you often do any of the following for a person with liver disease, you are a caregiver:

* Help with household activities such as grocery shopping, preparing meals, cleaning, lawn care, or bill paying
* Assist in personal care activities such as bathing, eating, or toileting
* Provide transportation to doctor’s appointments
* Offer advice on medical decisions

Tips for Caregivers

Many caregivers feel unprepared to help with the needs of people with liver disease and, at the same time, answer their own needs in their own lives. If you are a caregiver, here are some tips to help you manage these often conflicting demands.

Be organized. Keep a journal and make a list of all the things you do to help someone with liver disease. Decide which needs you can meet and which can be handled by other people. Ask friends, family members, neighbors, and co-workers for help. Check with local community agencies, religious organizations, and hospitals or health care clinics for information on volunteer and respite care programs that may offer assistance.

Seek support. Talk to other caregivers who will understand how you feel and may share how they manage similar situations. Talk with family members, friends, or religious leaders who will be supportive. Attend individual or group counseling. A social worker may be able to help you find support groups in your area. Some organizations offer in-person or online counseling sessions.

Be informed. If you make healthcare decisions for a person with liver disease, use his or her health care team for medical support and guidance. With the patient’s permission, speak to the doctors, nurses, or other health care professionals. In your journal, create a list of questions and write down the answers so you can refer to them again.

For help with insurance questions, call the patient’s insurance company. Many companies will assign case managers to answer patients’ insurance and benefits concerns, and assist with getting other health-related services.

Be good to yourself. Take some time for you, even if it’s just a few minutes. Have coffee or dinner with friends or family, read a book, exercise, or do something you really enjoy.

Know your rights.
The Family and Medical Leave Act requires most employers to provide up to 12 weeks of unpaid, job-protected leave to care for family members. Check with your employer’s human resources department for more details.

For more information, call us at 1-800-GO-LIVER, or write to us.

Hector
Avatar universal
Thank you so much for all the information! Every bit of information I get helps in one way or another. My husband hates pain medication mainly because of how it makes him feel plus he gets very cranky when they begin to wear off. That's probably why the doctor says nothing can be done. His spleen is enlarged to the degree that it's pushing against his Diaphragm and making it difficult for him to breath. I think it may also be pressing against his stomach as the Technician that was looking at it was pretty alarmed. However, the doctor was not alarmed and said it's nothing to worry about. It's become very clear that we are only in the begining stages of this. What was so alarming to me was that two years ago the doctor said all would be fine for many years to come. It advanced so quickly so it took me off guard, or at least quicker than the doctor had lead us to believe. It appears we have quite a long road ahead and there are many that are much worse off than us. Thank you both so very much for your information and advise. I am so grateful! This gives me a much better idea of what's ahead. My husband has always been a wonderful and good man to me and one of the best fathers I've ever known. Things are changing and both myself and my boys weren't prepared. Now we can do what it takes to be there for daddy just like he has been there for us for so many years. Thank you both again, so very much!
Avatar universal
Good Morning,
I am not sure the exact size of his spleen but I know it's over 12. I just don't have his medical documents near me right now. I'm also not real sure on his blood levels but know he has problems with his platelets. No, I do not trust the doctor but my husband does. He does not want me to upset the doctor by having his records transferred to the Transplant Center. They tell me all the doctors in the office we go to are hepatologists. Since my husband is the one that is suffering I have done as he has asked and just stayed quiet not requesting the records be moved. His blood MELD is 14 currently with no additional points for anything. Nothing new has developed as of late. We are very familiar with the ER as we were just there shortly after I wrote here last. A cold made its way into our home and since his immunities are down it took hold and send him to the ER. Seems strange that we went to the ER for a cold but it took hold of him as if death was at his door. I'm sure they tire of our visits but I'd rather be safe then sorry. Hector you have been great! A treasure chest of information. Thank you so much!
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