Patient Comments: Cirrhosis of The Liver - Experience

Question:

Please describe your experience, or the experience of someone you know with cirrhosis of the liver. Submit Your Comment

Comment from: hope, 55-64 Female (Patient) Published: April 29

I have cirrhosis. It is a terrible thing to have. When I lost 13 people in 6 months' time I went over the edge. I drank a lot. Now this is my life. I did not feel well and went to walk-in clinic. I was rushed to the emergency room and spent the next 2 months in the hospital. I went from 145 lb to 80. I almost died. That was in 2006. Since then I have had so many things wrong with me. It affected my heart, my kidneys; too many to list. I don't feel sorry for myself. I did this to me. I try to keep up a positive outlook. Now I am going through it again. My liver is getting worse. I could not have a transplant because it would be extremely hard to match me as I have RH negative B blood type. Try to be supportive. I know it's hard to do. I lost my husband because he could not handle it. But I just keep on keeping on. And as my best friend used to say, get done, do what you need to! I miss her terribly but I know she is by my side in spirit as are the rest of my angels who are with her.

Comment from: suew, Female (Caregiver) Published: April 07

My partner of 24 years and father of my 2 kids contracted the hepatitis C virus after a car accident when he was 21 years of age and given a blood transfusion which was tainted. He was given 20 years to live with the hepatitis C virus. It is now 24 years later and he has chronic liver disease. Since September last year he kept getting fluid in his lower legs and a bloated stomach. He drank a lot since he had injured his shoulder in February last year and had not been able to work at all. Enter February 2016 where he was rushed to hospital with fluid on his stomach at a dangerous level and variances in his esophagus (one still needs to be removed in case it ruptures and he bleeds to death). No cancer so far which is fantastic but there has been lots of fogginess, tiredness, and sleeping for 2 hour periods. He has not touched a drop of alcohol for 4 months now. He has been in hospital at least every 2 weeks having taps to drain the fluid and lately having abdomen pains which ends in him not being able to use his bladder or bowel properly. He is going to start antibiotics on Friday to clear this up and hopefully he will not get fluid retention as much. He takes fluid tablets, multivitamins, Harvoni (which is a new hepatitis C medicine) which I hope works and will help with some of his liver functions. He also has other tablets too and I think now is on about 7 altogether. Tonight at the specialists they said that he might have 10 years if he is lucky without a liver transplant, but then with transplants there is still the worry of side effects and rejection. I am hoping that once the medications are worked out properly which seem to change every time his body brings up a new problem that he can lead a fairly good life. I wonder if anyone else who cares for someone going through this, experiences anger from them. My partner told me to leave him, that I am lazy, and don't care for him properly. He seems to get very frustrated at the slightest thing and I have a feeling that it is the illness. Some days are really hard when you love someone going through this sort of thing. I hope that everyone on here can get some sort of life they can live happily with.

Comment from: Son John, 55-64 Male (Patient) Published: December 30

I am a Marine, I was stationed at a place where I was exposed to benzene. The water source was tainted. I have cirrhosis of the liver. I was told that I had 2 weeks to a month to live. I drank but not in excess. That was 3 years ago. I drink lots of water and take vitamins. The Veterans Affairs (VA) will not recognize this as being their fault. The State of North Carolina does and passed laws but they can only do so much. The VA is covering all my medical but I can no longer work and they refuse to grant me a pension. I am on social security. I suffer from neuropathy, arthritis and many other ailments affiliated with cirrhosis. I am getting a hip replacement 2/4/2016. I am 58 years old. I believe the VA should help. I can no longer drink or be carefree. I can no longer work. I have no spare money and the possibility of finding a girlfriend is not looking good. So on top of my ailments I am alone and depressed. It is not fair.

Comment from: awilson70, 35-44 Male (Caregiver) Published: December 11

My husband of 24 years has cirrhosis from years of drinking. He is now in total liver failure and his kidney function is at 40 percent. He has been hospitalized 8 times in 6 months because he is so sick. He has weekly belly taps, and bottles upon bottles of medicines. His mother is now caring for him full time since he needed a home care worker. He will be eligible for a liver transplant in 5 more months if he stays sober and if he survives.

Comment from: who, 55-64 Male (Patient) Published: November 11

I am in stage 3 to 4 cirrhosis of the liver. I have hepatitis C and went through the injection treatment 11 years ago. Recently I found out its back. I hope for more treatment in 6 to 8 weeks. I have dark urine and unsettled stomach. I am 58 years old, better start living life.

Comment from: Helen, 45-54 Female (Patient) Published: August 03

I took two massive overdoses, some twenty years ago, after the effects of the family courts, which destroyed everything of value to me. As there were at least four returns to theses courts over eleven years, it was not in my interest to seek help, as 'suicidal tendencies' would have been, further, misused in the court. However, obviously, it has been to the detriment of my health as I now have cirrhosis of the liver.

Comment from: Michwebmd, 55-64 Female (Caregiver) Published: December 01

My best friend has cirrhosis of the liver and never drank. It is fatty liver cirrhosis, as she always ate fattening foods, from cakes to cereals, etc. She was always overweight, but not way overweight, like 250 for a 5 foot 7 girl. However, now that she has cirrhosis, her life is miserable. Her legs have swollen up, a lot of edema, her spleen is now enlarged, and her abdomen is enlarged. She has been trying to eat healthy, but it may be too late. It seems very scary.

Comment from: judygarland, 55-64 Male (Caregiver) Published: November 25

My husband was diagnosed with primary biliary cirrhosis (PBC) about 8 years ago. Up until about 9 months ago, his condition was stable, taking ursodiol which seemed to help. However, he did not want to have a transplant when he was first diagnosed, thinking the cirrhosis would not progress. He also was unable to accept the dietary limitations for his PBC and also for his type 2 diabetes. He rewarded himself with Kentucky Fried Chicken at times. He also had a sweet tooth which was not very satisfied. Starting in early February, his abdomen became swollen and hard, but he ignored the symptoms and did not see a doctor. Unfortunately, when he finally did go for a medical workup, it was not possible for him to be put on a transplant list because a colonoscopy revealed a malignant tumor. He developed hepatic encephalopathy and hepatorenal syndrome. Toward the end, he was able to walk only with extreme difficulty and he was hospitalized several times, the last for two weeks in a local hospital. I hope that anyone who has received a diagnosis of cirrhosis, PBC or any other type, get regular medical checkups and realize that if your liver disease progresses, only a transplant will save your life. Don't ignore the signs and symptoms, you can't live without a liver.

Comment from: Sandy, 55-64 Male (Caregiver) Published: June 23

My husband was recently diagnosed with stage 4 cirrhosis. In November 2013 we discovered he had a platelet issue and an enlarged spleen prior to a surgery he was having. He has had a rash on his chest for over 4 years but our primary care physician didn't know what it was. He also has been seeing a pain management doctor for 8 years for pain from 3 back surgeries, who has kept him on Vicodin, oxycodone, and numerous narcotics. I cannot understand how this went unnoticed. My husband has been tapped twice, is tired all the time has lymphedema also. I don't know what to do for him, it is awful.

Comment from: temples, 75 or over Female (Caregiver) Published: April 17

My grandfather will be 86 years old next month and he has been in the hospital now for 8 days. They seem to think that it"s cirrhosis of the liver. They drew 10.1 liters of fluid off his belly on Monday. He has been swelling up like a balloon since the end of January. The man never goes to the doctor and I"m terrified to find out how advanced it is. He has never taken a drink in his life so it"s not alcohol that would have caused this. He has always been a health freak by eating right and taking vitamins. They are testing him for hepatitis but if it isn"t hepatitis, what else could it be!

Comment from: Wiscowyo, 55-64 Male (Caregiver) Published: March 06

My husband has cirrhosis and has had for more than 8 years. He has not stopped drinking, he is now sleeping a lot. When he drinks he falls, and his legs don"t work at all, he doesn"t make since when he talks anymore. I'm not sure if he is drunk or if his brain is soaked with alcohol. He has been hospitalized twice now, and fluid have been taken off his stomach. This is an awful way to die, it is such a slow death, and being the caretaker, I can say it is killing me slowly along with it. How much longer can he keep going! Last time he was in the hospital two months ago, his liver function was at 283, should have been at 0 - 40 for normal.

Comment from: jose2187, 25-34 Male (Patient) Published: December 19

I am a 26 year old male. Basically since I was fourteen I've been drinking sometimes heavy and sometimes not. Anyway for the last 2 years I knew something was wrong, I was always sick and I would drink to cover it up so I wouldn't feel pain. This went on up until April of this year. April 23rd I was of course doing my regular drinking 40oz of malt liquor, I don't remember but I guess I was losing consciousness. So I was taken to the emergency room. Long story short I got out 9 days later and my abdomen was filled with fluid and I had a tube hanging out of my stomach for my gallbladder. Going through all the sickness I finally got insurance and went to see a gastroenterologist. He confirmed what was basically already known I kind of already faced the facts, that I have alcohol liver cirrhosis. I was told I would need a transplant In about 4 or less years so right now I'm waiting to go to the transplant hospital on January 21st, actually my 27th birthday... and run tests and all that stuff. So I just wanted to say if you have younger kids try and keep them from drinking because look at me, I'm dying at 26 from partying, thinking I knew it all. Also it is better to be aware of all the signs in your own lives, if your body starts not functioning as well, I would get checked.

Comment from: lou, 13-18 Female (Caregiver) Published: July 17

My child was diagnosed a year and half ago with stage three cirrhosis of the liver, at 12 years old. The cause of her liver disease was diabetes, celiac disease and food allergies. It is a constant battle to make my child understand how serious this disease is and how to really maintain and try to make it better.

Comment from: A CONCERNED, 35-44 Male (Caregiver) Published: February 27

My close relative has had cirrhosis for more than one year but he cannot stop drinking. The doctor said his cirrhosis is on fourth stage and transplant is the only option at this stage. My relative stopped drinking but I am very upset, transplant is very costly and I don't know who will donate. He is 40 year old male.

Comment from: deekshit, 45-54 Male (Caregiver) Published: April 17

My aunt is suffering from chronic rheumatoid arthritis (RA) since 18 years and now about 3 years back she diagnosed with cirrhosis of the liver. Her symptoms are heavy hair fall, weight loss, red color urine, frequent headache, loss of appetite, jaundice, and gum bleeding.

Comment from: Dorothy, 35-44 Female (Patient) Published: July 15

I have spots all over my liver, I haven't told my family.

Comment from: lana, 45-54 Female (Patient) Published: December 06

I have had hepatitis C for 12 years and it turned into cirrhosis of the liver. I have been put on Pegatron.

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