Many people with liver disease are told that they will not get better. My family and I all wondered if I would make it. Can you get better with end stage cirrhosis? My doctor predicted I wouldn’t make it 4 more months. I told the nurse that night, “You don’t know me.” I had seen my dad dying of a hepatic coma from alcoholism. He made some changes, and made a comeback.
So what does it look like when you’re coming back from ESLD or late end stage cirrhosis? Start off by understanding the symptoms and the source of liver damage. Then you can make yourself some promises.
The Comeback
Stabilize – Your doctor should run lab tests, and then do everything to get your body calmed down. If you are acute, expect a hospital bed. They will stabilize anemia or platelets with a blood transfusion, especially if you’ve had internal bleeding from varices. You may get a paracentesis to reduce tummy swelling, and start diuretics to keep fluid off. Lactulose helps with brain fog.
Cause – Next, you’ve got to deal with the source of inflammation. If you have fatty liver, a diet and lifestyle change can help. If you have Hepatitis C, there is a cure. For Hepatitis B, there are medications to calm the liver. If it is chemical, alcohol, medicine, or drug induced, you have to get away from all that.
Promises – Here’s where you can make a difference in your own life. Staying within all the guidelines that your medical team offers makes a huge difference. Take all of your medications on time. Start dietary changes by reducing sodium and eating liver healthy foods. Please keep reading and following the doctor’s orders. Promise yourself to do what it takes. You’ve got to love yourself enough to do this.
Patience – In time, they will assess your stage of liver disease. You may see a gastrointerolgist. By staying in compliance, you will be more likely to prove to the doctor that you are going to fight for your life.
First, the gastro doctor got me stabilized, and eventually referred me to a transplant hospital. I was able to get cured of the Hepatitis C and my liver did calm down, but the internal bleeding never really stopped. I had to have bandings repeatedly, and finally got liver cancer. Even THEN, I stayed calm and got a transplant. This all started over 9 years ago. I’m STILL going.
At the End With Liver Disease
Your hospital stay may be short, but I hope you get a bed if you need it. If they stabilize you and send you home, that’s ok. There’s a lot of sources of infection in the hospital, and you can eat better at home anyway.
I’m writing this as a response to readers who went to the emergency room when their liver fails. Family members are often in shock when their loved one is sent home. Sometimes they are still unstable and sick. Please note that in many cases swelling, bleeding, and jaundice can be calmed down, or even reversed. I’ve seen it over and over with Hepatitis and fatty liver.
Can you get better with end stage cirrhosis?
Now what do you think? I am leaning towards the fact that most liver disease can be prevented, treated, or cured. Sometimes it cannot be, but you have got to make yourself a promise and give yourself a chance to heal. Even when you face the end of your life, and I have, your body has a remarkable way of healing when given the right treatment. Do all you can to set yourself up for better days ahead. XO All my Best, Friends, Karen
20 thoughts on “Can You Get Better with End Stage Cirrhosis?”
Thanks
You’re so kind. And welcome. You’re welcome and it’s good to know someone is reading this. hahahah. xo Karen
Thank you! You have been a wonderful encouragement to me while I battle this terrible disease.
Thank you for stopping by to chat.
For sure there is NO guarantee, but if you turn and fight – you definitely increase your odds of winning the battle against liver disease.
Much love and stay in touch.
xo Karen
I appreciate all the information you have given me, however it came to late for my son who passed away last year.
Your story hits the heart pretty deep. It’s one that we all have gone through, as many of us were close to death and pulled out. With continued awareness and better medical care, I hope that fewer people will pass due to liver disease related causes.
I’m so sorry you have had to suffer the loss of your son. No mother should have to bury her own children. From those who I have heard from, it leaves an empty place that nothing can fill. From the bottom of my heart, I send love and peace. I know you must be feeling a lot of things. Buried in the loss and pain, and also knowing that your dear son is at peace now, and feeling no pain.
May I offer a piece on Hepatitisc.net for you https://hepatitisc.net/spotlight/someone-dies/
It’s written about Hepatitis C, but would really apply to anyone who has a loss from liver disease of any kind.
Please accept my deepest condolences on your loss. xoxoxo Karen
Karen, have had end stage for 10 yrs now. I have good days and bad ones (weakness) your recommended diet has help me cut my down time!
Thank you!
Aw Sam,
I needed to see this. So many of us need to see your words of hope. Back in the day, we were alone with our sad stories. Now, through the internet, we can all see that the doctors are not always right. I’m so happy that the diet helped. We keep going and going and going.. xoxo Karen
but at the end the question is not answered , can the liver cells reverse and regenerate one you reach end stage cirrhosis, if you do all that , what are the chances? cuz all doctors basically say you are done
I’m so sorry all the doctors are saying you’re done. I’ve been there and still think the answer is clear:
YES! In most cases of liver disease, people are able to live for many years after a diagnosis with End Stage Cirrhosis. Not only myself, but many many are living for decades beyond their initial diagnosis.
However, to get a complete picture, please read my last blog about Erika Zak. In cases like hers, the answer became NO, because her body was too traumatized by all the years of breast cancer, chemo. botched surgeries, insurance denial, and finally her body was too traumatized to endure a transplant. So there will always be exceptional cases where wonderful people who try and do everything right have extra complications that cannot be overcome.
Sadly, we grieve the loss of those who pass. We also cheer for those who survive. Our own Elizabeth is a great case for having breast cancer treatment resulting in liver disease. She’s reversing fibrosis and damage and just got praise from her doc.
I think the point of this blog is Don’t Give Up on yourself. Do everything you can to be that one person who defies the odds. Erika’s story is one that raised awareness for insurance coverage and the next person who battles that will hopefully have a better outcome.
Sorry so long. I have this need to be accurate and never mislead or give false hope. But I do want you to have hope. Keep me posted on your journey. xoxo Karen
This is good news for me. I’ve been in end stage since 2013. 6 yrs later, I’m still here.
I haven’t done everything I could’ve, but even with that, and being told to “get my affairs in order,” more than once, I’m still here! Don’t give up hope. Listen to what Karen says, and even better, try some of the things she suggests. She’s “been there,” and has so much information we all can benefit from. We have to love ourselves enough to fight for our lives. Yes, it will be difficult at times, and giving up seems like the only solution. It’s not. There’s always something else. Research is continuing, as I speak. I’ve been on this path of liver disease, then, recovery for over 50 yrs., diagnosed with HepC around 15 yrs. ago, “cured” with 2 rounds of Harvoni in 2015 or 2016, just after the FDA approved it. Prayer helps, exercise helps, liver friendly diet helps, and get the sodium out of your diet, use herbs, or lemon or lime juice (fresh), it tricks the taste buds! Find a gastroenterologist you trust, you’ll need them for varacies bandings, bloodwork, and liver-friendly diets. Happy trails. Lana
Lana,
Your story is incredible. Being on the recovery and liver disease path for most of your life means the valuable insight and wisdom you have is tried and true. I’m SO glad that research is continuing. It’s really something that we have used the same things to get better. Prayer, exercise, the liver friendly diet. Lab Work!! Yes! That is what we all need to be sure we get to watch out.
I appreciate your agreement about loving ourselves enough to fight for our lives. You know what? In spite of all of our struggles, it IS a life worth living dear friend.
Thanks again for the wonderful chat this morning. Nice to wake up to the words from a friend who’s been there.
xo Karen
Great blog lovely amazing lady.🦔🐝🐿
Thanks so much lovey. I can’t believe what cutie little emoticons you put on here! And my spammy comments buried those sweet things.
I hope you’re doing well and totally love to hear from you. Send love any time and I’m going to make sure to see them in the future.
Are you ready for the colder weather over there?
xo Karen
I, too, was diagnosed in late 2012. Alcoholic cirhosis, esld. I had a very hard time quitting alcohol, but I did. I also had a hep c diagnosis in 2008, but it cleared. I am struggling some days, but I do believe I feel better a little more each year. I have changed my diet, too. Salt and fried food hurt my stomach now, so it’s definitely easier to make healthier choices.
Hi there. It always makes me happy to meet a new friend. That’s why I started this guide was to connect with people like you who are trying to live a longer and stronger life in spite of liver problems.
First – Congrats on quitting alcohol. I truly believe that your liver will continually improve with time. You can live many years with the right lifestyle. It sounds like you’re all over that. Well gone on changing the diet.
Even after the transplant, my tummy won’t do well with salty or fried foods. Have you taken tums or omaprazole for that? My doctor said I should try it.
Also, have you had a scope recently? Keep me posted friend,
xo Karen
I’ve been really encouraged by the many things you write about. My husband was diagnosed with end stage liver cirrhosis over eight years ago. He’s had banding many times plus liters of fluid removed from his abdomen. Last year he was sent to Cedars-Sinai Hospital in Los Angeles to do liver transplant testing. Since he did well on the tests they were able to do a liver shunt in January. He’s done well with the shunt, but he still has good and bad days. The hardest part has been watching my husband go thru so much ! I pray that we get more time together ! Thanks again for doing what you do to help others. God Bless….
You’re so sweet to care for your husband. I know that he appreciates it so much. Many people live well and are able to stay strong after getting a shunt. Did they list him for a transplant? It’s exhausting having the bandings and taps, but it helps us maintain a good quality of life.
I sending you all my love and prayers and hope that you’ll stay in touch. Take good care of yourself while being a caregiver. I hope you have all the support you need.
xoxo Karen
Beat Hep C but stage 4 liver with fatty liver. Been ok now 5 years. But need to take better care of fatty liver. Take organic milk thistle. flaxseed. tumeric. Omega 3 fish oil. B 12 Supplement
Been on low carb diet. But not eat fatty protiens. Just more veggies green. Had to loose weight. Lost 80. Need to drop another 30. Then back to healthy eating?? What do you think?
You and I have a lot in common. Congrats on beating Hep. You and I are doing the same thing except I’m not taking the fish oil. I think the low carb diet is the best way to go.
Dang YOU! Losing 80 lbs is no joke. I think it’s a hard time of year during the holidays. I was super sick the first year right about this time I was getting biopsied. I ate almost NO sodium and cooked like crazy. It was super duper depressing. BUT I wouldn’t change the outcome.
I saw that you had posted earlier, and hope to hear back from you soon. I’ll be watching.
Keep up the good work!
xoxo Karen
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