ESLD without bleeding out

Hep C now Cirrhosis since '08
Curious if anyone out there can tell me if ESLD patients can die without bleeding,etc?
I had my 3rd EGD yesterday and looking good, which I am grateful for. But it made me think about my mortatilty once again.
I have muscle wasting and a whole bunch of other things that constantly remind me of this disease and I wonder when the hammer falls???
Sorry to say but this is the slowest death.
,

[HectorSF]

Of course. There are many life-threatening complications of End-Stage Liver Disease besides bleeding varices. Perhaps you might want to learn more about cirrhosis and its complications so you know what will happen in the future if you don't manage your disease?

What are you doing to care for your illness?
Are you listed for a liver transplant?
Are you being cared for and monitored by a hepatologist at a transplant center.

I would suggest you stop focusing on the negative and take action to manage your illness. From your posting yo seem very passive as though you are waiting to die. Don't you have any thing to live for? Or any fight remaining.

Myself and many other fight every day to live because we want to live. We haven't given up hope. For the vast majority of people with ESLD they don't have to die if they don't want to. A liver transplant can save us. It is not as though we have inoperable brain cancer. We still have options if we want them.

I have both ESLD and liver cancer. Two potentially fatal diseases but I don't plan on dying if I can help it. I have worked for many years to get to the position now where I should get a transplant in the next few months. If I hadn't of advocated for myself I wouldn't be still be here after 17 months of liver cancer.

I would suggest you do something about your illness before things get worse and you are hospitalized and you won't be able to advocate for yourself. Remember it is your choice how you deal with your illness. You can be a victim or a fighter the choice is yours.

Good luck to you.
Hector

[orphanedhawk]

I never bled out, I never had varices yet when I had my transplant I was living on 8% of my liver and had weeks of life left, according to my surgeon.

[HectorSF]

OH, I hope you didn't bleed out (in medical terms "Exsanguination") or you would be here!!!  :-0
Bleeding varices is one thing... losing so much blood you die is another thankfully. But it is always the right things to do if someone starts vomiting blood, or have black tarry stools to get them to an ER.

AASLD PRACTICE GUIDELINES
Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Prevention%20and%20Management%20of%20Gastro%20Varices%20and%20Hemorrhage.pdf

"Gastroesophageal varices are present in approximately 50% of patients with cirrhosis. Their presence correlates with the severity of liver disease; while only 40% of Child A patients have varices, they are present in 85%
of Child C patients. Patients with primary biliary cirrhosis may develop varices and variceal hemorrhage early in the course of the disease even in the absence of established cirrhosis. It has also been shown that 16% of
patients with hepatitis C and bridging fibrosis have esophageal varices.
Patients without varices develop them at a rate of 8% per year, and the strongest predictor for development of varices in those with cirrhosis who have no varices at the time of initial endoscopic screening is an HVPG
10
mmHg. Patients with small varices develop large varices at a rate of 8% per year. Decompensated cirrhosis (Child B/C), alcoholic cirrhosis, and presence of red wale marks (defined as longitudinal dilated venules resembling whip marks on the variceal surface) at the time of baseline endoscopy are the main factors associated with the progression from small to large varices.

Variceal hemorrhage occurs at a yearly rate of 5%- 15%, and the most important predictor of hemorrhage is the size of varices, with the highest risk of first hemorrhage (15% per year) occurring in patients with large varices. Other predictors of hemorrhage are decompensated cirrhosis (Child B/C) and the endoscopic presence of red wale marks. Although bleeding from esophageal varices ceases spontaneously in up to 40% of patients, and despite improvements in therapy over the last decade, it is associated with a mortality of at least 20% at 6 weeks. Patients with an HVPG
20 mmHg (measured within 24 hours of variceal hemorrhage) have been identified as being at a higher risk for early rebleeding (recurrent bleeding within the first week of admission) or failure to control bleeding (83% vs. 29%) and a higher 1-year mortality (64% vs. 20%) compared to those with lower pressure. Late rebleeding occurs in approximately 60% of untreated patients, mostly within 1-2 years of the index hemorrhage."
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Trying not to be too gruesome, so I won't go into details, here are some of the common complications of cirrhosis that can be life-threatening in decompensated cirrhosis.

University of Maryland Medical Center
Cirrhosis - Complications

http://www.umm.edu/patiented/articles/what_symptoms_of_cirrhosis_000075_4.htm

Complications:

A damaged liver affects almost every bodily process, including the functions of the digestive, hormonal, and circulatory systems. Decompensated cirrhosis increases the risk of serious and potentially life-threatening complications. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) The most serious complications are those associated with portal hypertension (increased pressure in the portal vein that carries blood from the intestine to the liver). They include:

Ascites (fluid buildup in the abdomen) which can lead to (SBP) Spontaneous Bacterial Peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites. Other bacterial infections are also a common complication of cirrhosis.

Other bacterial infections are also a common complication of cirrhosis.

Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)

Hepatic encephalopathy (damage to the brain). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma and death.


Cheers mate!
Hector

[rpooo]

Hello Zanney,

I understand it has been a long hard road living with this disease but you should know there are many things you can do to live more comfortably with ESLD. It may seem like a chore but after a while I assure you these things become routine and you will begin to do things that are good for you with very little thought.

Please take advantage of the information above that hector has provided so you may become more familiar with  your disease. As Hector stated it is critical for you to get involved since your survival depends on it. Below are some ways I can think of to do just that and more importantly start feeling better.

First register with a transplant center where you will receive the best care available. Any doctor in private practice just doesn’t have the ability or the means to provide you with the quality of treatment you deserve regardless of how good their intentions are.

Next obtain a copy of each lab test performed and bring it home and put it in a folder (there is normally no charge). Then bring home the next and compare it to the last. Become familiar with how to read your results and if you need any help myself and others in the group will do our best to provide you with information and links that may suggest what efforts on your part that can be made to help bring these numbers back in range whenever possible. This can be quite rewarding and you are the one to benefit.

Diet- people with cirrhosis no longer absorb nutrients as well as they should so often vitamin supplements are used. A multivitamin for seniors that contains no iron can be very beneficial and help boost or maintain strength required for your day to day activities. Avoiding fatty and processed foods can help reduce amount of toxins in your body that your liver is no longer able to filter out. Foods that are high in antioxidants can also assist. Reducing your protein intake can assist with symptoms of HE (hepatic encephalopathy). In many cases a low sodium diet is necessary to reduce fluid retention causing ascites and edema. Avoid any and all alcoholic beverages.

Light cardiovascular exercise- You should always consult your doctor before begining any exercise. Stretching and exercise will increase blood flow to the muscles flushing out the toxins built up causing ache and pain. This will also help you maintain or increase strength. This is critical for patients with ESLD facing transplant.

Medications- All medications should be approved by your hepatologist weather OTC or prescribed by another doctor. No other doctor is qualified to make a decision concerning what medications are right for you. Many types of medication can cause the development of your cirrhosis to accelerate. There are medications and treatments available for just about all symptoms of cirrhosis. Unfortunately the only cure is transplantation. You should know that most transplant centers have a success rate of 90% or better.

This is the most I can think of to help you get started. If you have any questions please feel welcome to ask. I hope you will find the strength and determination you need. Take care and Welcome to MedHelp! Please keep us posted with how things are going.

Randy

[HectorSF]

Randy has good suggestions for you. Very valuable information for all cirrhotics. As he said by hooking up with a transplant center you can work with your hepatologist on all the issues he mentioned to manage them and stay as healthy as possible for as long as possible.

This is a process. It takes time to adjust to managing your illness. None of us does this overnight. One step at a time. We are all learning every day. Each point the Randy made can tangibly help you to be healthier and feel better. It really works. If I hadn't have learned these things myself there is no saying how much worse I would feel and be.

Cheers!
Hector

[zanney425]

Ok Hector, Well thanks for your strong advice!!!!!
I am not by any means a passive person nor am I looking to die as I have to much to still live for and besides I don't seem to be at the stage where I have only a short time to live.  GOD will let me know I am prety sure of that!!
I have been dx since '06 with Hep C, had biobsy and all tests. Did tx in '07 but after 3 weeks had to be pulled off because of dipping blood values.  I have as do many people Splenomagaly,Thrombocytopenia and last year I had Primary Pulmonary Coccidoidomycosis and double pneumonia and then found out I had COPD and CAD from that little experience.. Oh and I have portal Hypertension and on and on.  Have been followed by a Liver doctor at the Liver Center since '08 and was then told of the Cirrhosis.
I do not have and Cancer as you do and I hope that it is not something that happens. But the percentage of older people with Cirrhosis is up there.
I watch what I eat, I haven't had anything to drink since long before I was dx and I take lots of vitiams
I am glad that you are able to remain a constant positive.  For me I can get somewhat whinny when my joints and muscles hurt, when my bones are sticking out everywhere, when I know somedays I don't think right.
The list is endless and I would be other than honest if I said anything but the fact that I hate this disease and the slow death it brings.
You might wnat to get more facts about someone before you offer up advice.  Trust me I am not sitting around waiting  for the grim reaper!   Oh and one last thing I am not a good canadiate for liver transplant because I did not respond to treatment and my meld score is to low...
Are we ok now.

[orphanedhawk]

Not responding  to hep C treatment had nothing to do with getting a transplant.
MELD score of course can, unless you do like I did and have a live liver transplant.
I never had the cancer either, not everyone does.

We only know what you tell us so please don't jump on people who are trying to help you. Hector is also very ill, nevertheless he comes here and does his best to help others.

[zanney425]

Thank you for your response.  Seems like it is so different for all

[HectorSF]

Sorry but it is up to the poster to present their liver disease and other health factors so that others can respond to questions based on how the poster presents there situation. It is not up to us to know your health status before commenting. All we know is what you tell us. The more specific you are, the more specific our comments will be.

I am sorry if if some of the facts about cirrhosis are not what you want to hear. Cirrhosis is not a slow death for the majority of people with cirrhosis when the disease is properly managed. As I thought Randy point out so well, there are many things a patient can do to reduce their complications and symptoms of cirrhosis and take care of themselves. We are only victims if we choose to look at our illness that way. Our own attitude about our illness is our own choice. We can see any illness as a punishment, as something bad that happened to us or we can see it as a challenge to overcome, as a opportunity to learn more about ourselves and find our inner strength. A learning experience that can enhance our appreciation of every day we are alive, appreciation of the love of and for your friends and family.

Response to hepatitis treatment or not being ill enough (low MELD score) to receive a transplant currently doesn't change the reality that most folks with cirrhosis caused by hepatitis C are eligible for a life-saving transplant when they need a transplant and therefore they do not have to die because of liver failure. Liver failure and liver cancer can both be cured by a liver transplant. I am glad to have that option.

I agree with you. I very much hate this disease but that fact is it is my reality so I try to find the positive in it since I have to live with it. Since I have no choice but a transplant to continue living it will affect every day on my life until the day I die. There is no going back for me. So I see no point in crying over something that I can not change. I hope for you that you are able to stop your liver disease before the point of no return. It is still possible for you. There are new treatment that may be able to help you cure your hepatitis C before your liver is too damaged or you develop liver cancer. The only cure for liver cancer is a transplant. Luckily liver cancer is 3x more common in men than women so you have less odds of developing it. But you should continue surveillance so if you do develop it they catch it early and keep it under control.

I am not always positive and feeling well. Far from it. I have been sick every day since I decompensated 3 years ago and have little left of what was my life. But for me to complain about my daily struggles doesn't help anyone including myself.

I don't believe it is good to downplay the serious of advanced liver. It is no bed of roses as you know. But I also don't think it helps anyone by implying that any degree of cirrhosis is a death sentence either. Neither is true. The facts of cirrhosis speak for themselves if we choose to educate ourselves are them. There is plenty of information available online for people who want to understand cirrhosis and its management.

Good luck with managing your cirrhosis.
Hector

[rpooo]

Zanney,
As you read through our community here it is with certainty that you will see exchange after exchange of information in an attempt to help each other cope and learn about our disease. You take a life threatening illness such as this and you see people devoting much of the time they have left to helping others learn to manage and share words of encouragement in an attempt to inspire. Many of these posts take a very long time for some of us to write. It will quickly be apparent to you that the members of this community care about others and would never mean to offend you in any way but to offer the best advice they can based on the information you provide.
Hector says so well "A learning experience that can enhance our appreciation of every day we are alive, appreciation of the love of and for your friends and family."
My cirrhosis is due to 20+ years of alcoholism. 947 days ago on March 23 2010 I received my diagnosis and took my last drink. I was 38 years old. Seeing my 33 year old wife cry because she was scared for me and for her, and my two daughters do the same this was without a doubt the worst day of my life! I thought to myself "What have I done?" My family needs me, and the real me is what they got! I will no longer live my life in that drunken haze and I will appreciate every minute. My point is what I thought to be the worst thing in my life turned out to be a blessing after all. Had I not gotten cirrhosis I would have felt perfectly content living the rest of my life that way and never really experiencing how terrific my life and my loved ones really are.
Today I have all the motivation I could ever need, if my life is shorten because of cirrhosis it won't be because I didn't try. I know your situation is much different but you too must find your motivation and believe me MedHelp is all about others helping others just look around. Nobody knows everything but you will learn how to feel better and be inspired to do better. I wish you all the best.
Randy

[zanney425]

I whole hardly apologize to you and am truly sorry that I went into a triate.
I realize you have a lot of knowledge and are suffering and take time to share.
I guess by just asking the question without any background on me was silly but I can assure you it was not silly for me.
Sorry to say I was blown away by the the word "passive" and the "waiting to die" phrase.
But how would you know that?
I know thw only rx I have is a transplant but I have been told that is not going to happen for me.
If I can keep my MELD score from going any higher maybe I will live a lot longer.  Having a MELD score of 11 and living in AZ and also having medicare + state help does not not put me at the top of the list.
GOD Bless and good luck with yours.

[HectorSF]

That is very kind of you to apologize. I know you are upset and are stressed about your current situation. It is normal to be emotional about the situation you find yourself in. I should have found a better approach to try to help you so you understood where I was coming from. Misunderstandings are bound to come up as we don't know each other and all we have to go on is how we interpret what the other writes...

Yes, a MELD score of 15 is usually required to be listed for transplant. But not everyone with a MELD of 11 feels the same. One person can have no symptoms while another could be chronically ill with various symptoms and complications. Unfortunately the MELD score is the best way yet devised to measure how ill someone is.
The MELD score go from 6 - 40. 40 being hospitalized patients with End-Stage Liver Disease. So yes you are not illegible to a transplant now but as your liver disease progresses you could be.

Remember Medicare is a federal program. Depending on the supplement you have (whether you have a Medigap plan or an HMO determines where you can go for a transplant). I am listed for transplant here in SF as well as at Yale-New Haven and have Medicare which they both take for insurance. I have a Medigap plan so I can go anywhere in the US and be treated.

"I have been told that is not going to happen for me."
Do you mean that you have another disease that prevents you from getting a liver transplant? Sorry I am not clear on that.

Mayo Clinic in Phoenix/Scottsdale, Arizona is a very good center and they transplant at low MELD scores. Have you talked to them? Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.
Here is there transplant services number. 800-344-6296 (toll-free) 8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday.

I am not sure what symptoms you are having but I personally have found that certain medicines, an exercise program and a diet program have improved my quality of life tremendously. A transplant center has folks that can help you with being as healthy as possible for as long as possible.

Also keep in mind there will be new non-interferon all oral drugs in a few years if the trials are successful. Having cirrhosis should not be a barrier to treatment. I have cirrhosis and I am in a Gilead GS-7977 + ribavirin study and became undetectable within 2 weeks. Side effects are minimal compared to current treatments. Treatment is for 24 weeks. I am on week eight and no anemia, my platelet count has actually gone up from 57,000 to 89,000 the highest it has been in over 5 years.

I know it is very difficult especially when you think about your own mortality. I got help from a therapist that works with the elderly so I could talk about my fears of death. It is not something you can talk to friends of family about most of the time. As it brings up feelings in others about their won mortality and most people can't deal with it. I have been there and made all my arrangements in case I die. It wasn't pleasant to think about how I want to die and make arrangement with the crematorium. Then tell my sister where I want my ashes spread. Luckily over time it gets easier to live with these thoughts, but I also know it was the toughest thing I have ever dealt with by far. To me death means losing everything I have ever known which is a scary proposition. I have met others from all walks of live that have had to face their own mortality too, and they are all just as frightened. I have met everyone from a Tibetan monk, to grandmothers, to the toughest of macho men and I have seen them all break down and cry about it. No this isn't easy. It isn't something we volunteered for. But unfortunately it is our reality. So we do the best we can. Perfect no way. The best we can each day. Some days are better than others. We are all human and make mistakes. We should forgive ourselves and others. There is no reason to beat ourselves up. We have enough on our plate with our illness. Adding negatively is really pointless and a waste of our valuable energy.

I would highly recommend a book call "Finding Your Way Through Cancer" by Andrew Kneier. It is a book for anyone that has a life-threatening illness, not just cancer patients. I have found it to be the best book I have seen for patients who need to deal with the physiological aspects of living with a life-threatening disease. He presents many patients stories and how they came to terms with their illnesses even when they had incurable cancers. He shows you the many positives that can come from the challenge of major illness and how it can make your life more rewarding and appreciative for all the good things you have in your life. Sometimes we have to be in fear of losing life to truly appreciate how wonderful it is to be alive every day. It is something that most people take for granted and have no reason to see.

The medical part of our illness we have little control over ultimately. We just need to get the best medical care available and partner with our doctors to do all the right things for a good prognosis. But the attitude we have about our illness is something we do have control over. I am not saying it is easy but it is necessary for us to live as best we can for as long as we can. I know there are no guarantees. That goes for anyway. Any of us could get hit by a car today. The odds are very low, but it does happen. But knowing that, make me cherish everyday I am alive. Even the days I am suffering. Personally I'd rather be alive and suffering then to be dead and not suffer. I hate when I feel horrible and can't function as much as the next person, but then I think I am lucky to still be alive. That is the big picture.

I don't know how much time I have left and I don't want to have wasted time being a victim of my illness. I am not planning on dying anything soon if I can help it. But I have to be realistic as well. If my cancer gets outside of my liver I will be taken of the transplant list and have 4-6 months to live. That is the reality of liver cancer. So when I start moaning about this and that symptom or complication I tell myself at least i am still here. So if I only have months to live, I am going to enjoy every minute of it while I can. No regrets. I want to die at peace with myself and my friends and family. The is the bottom line for me.

Take care.
Hector

[rivll]

Thank you so much Hector, for that post. As ever, you are the man.

[zanney425]

Thank you Hector for all your information.  I actually do live fairly close to Mayo Clinic.   I am going to hang onto your post for all the information.
I go to my liver doctor on Wednesday and will once again ask some of those questions.
Thanks so much for taking the time.

[HectorSF]

Good luck with your visit today!
Let's us know what happens.

Mayo is definitely the best of the best. Having such a center of excellence is a big plus.

Cheers!
Howard

[crossroadsec]

Nothing hits you with mortality like a bleedout. It still haunts me. I trust your doctor is watching your platelet count. With regular banding and a medication like Nadolol, you may be able to control portal valve hypertension. It's a daily threat to those who are prone to varices. Watch your sodium intake and eat that liver lovin' diet. Sounds like you are in touch with an excellent medical team. Best to you. I plan on being here a long time, and hope you'll get the attention you need to do the same.
It's possible,
Karen :)