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Cirrhosis of the Liver Community
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Caring For Someone With ESLD

My Aunt has spent the last 22 years of her life caring for my Uncle who was a stroke victim.  He recently passed away.  About a month later, she went to the ER because her stomach has swollen.  She looked like she was about to give birth to twins.  That's when she was told she had ESLD.  She didn't/doesn't drink, she does not have hep c, but she is diabetic and has a leaky heart valve.  She is having her stomach drained about every 3 weeks right now.  She has an appointment tomorrow with her GI doc. This will be her first full work up.  Any questions you suggest I ask?  Any suggestions on anything I can do to help her situation?  I have a hard time believing that we (medical community) cannot fix this.  She is 55 and looks 75.  Life has been hard on her the past 22 years and she has not taken very good care of herself.  I read earlier about some supplements she can take.  What about juicing?  Is there anything we can do?
3 Responses
1475202 tn?1536274577
COMMUNITY LEADER
Hello and welcome to MedHelp.

I am very sorry to hear about you Aunt's condition. At this point it is imperative to find out what has caused her cirrhosis. Treating that underlying cause can help prevent further liver damage. A wide range of diseases and conditions can damage the liver and lead to cirrhosis, including:
Chronic alcohol abuse
Hepatitis C
Hepatitis B
Fat accumulating in the liver (nonalcoholic fatty liver disease)
Destruction of the bile ducts (primary biliary cirrhosis)
Hardening and scarring of the bile ducts (primary sclerosing cholangitis)
Iron buildup in the body (hemochromatosis)
Liver disease caused by your body's immune system (autoimmune hepatitis)
Cystic fibrosis
Copper accumulated in the liver (Wilson's disease)
Infection by a parasite common in developing countries (schistosomiasis)
Poorly formed bile ducts (biliary atresia)
Inherited disorders of sugar metabolism (galactosemia, glycogen storage disease)

So a good question to ask would be what steps are they planning to take to discover the cause, treating this will be imperative to her survival. One thing that should not get over looked is you mentioned she has a leaky heart valve. Heart failure can cause a number of symptoms including shortness of breath, leg swelling and exercise intolerance. Backward failure of the right ventricle leads to congestion of systemic capillaries. This generates excess fluid accumulation in the body. This causes swelling under the skin (termed peripheral edema or anasarca) and usually affects the dependent parts of the body first (causing foot and ankle swelling in people who are standing up, and sacral edema in people who are predominantly lying down). Nocturia (frequent night time urination) may occur when fluid from the legs is returned to the bloodstream while lying down at night. In progressively severe cases, ascites (fluid accumulation in the abdominal cavity causing swelling) and hepatomegaly (enlargement of the liver) may develop. This may be a long shot but certainly something worth mentioning, I hoping her diagnosis wasn't given just because she has ascites. Do you know what testing was performed to diagnose cirrhosis?

I wish the very best for you both, please let us know if there is anything further we can try and help with.

Randy
446474 tn?1446351282
COMMUNITY LEADER
If your Aunt had ESLD see needs a referral to a liver transplant center ASAP! No GI can help her in the condition she is in. GIs are not educated or experienced caring for patients with advanced cirrhosis. Time is NOT on her side. Any more time she wastes with a GI can not be made up for. Her liver is failing. She needs to get a referral to the nearest transplant center to get evaluated so she can be put on a liver transplant waiting list. At this point, her liver disease has progressed pass the point of repairing the damage. In time she will need a new liver to stay alive.
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Tulane Medical Center
New Orlean, LA
Abdominal Transplant Clinic
(504) 988-5344

Evaluation
Usually your gastroenterologist or primary care physician will make the transplant  referral, but anyone, including you, can call to make the transplant appointment.
Sometimes insurance companies will tell the policy holder which transplant centers are covered in their network. Our financial counselor can also check on this for you. A transplant evaluation is the process by which you prepare for transplant. It includes a history and physical exam, psychosocial assessment, nutritional consultation, and
financial evaluation. The first appointment will take approximately 1-2 hours. This is just the first step in the evaluation for many patients, as you will need additional tests and consultations with other physicians. Your Transplant Coordinator will be able to tell you  what additional tests you may need before you leave after this first appointment, but
sometimes we may not be able to tell you until after the whole team reviews your case.
The formal liver transplant evaluation usually takes 2-3 days and is done on an outpatient  basis unless an emergency situation exists.
The liver transplant nurse coordinator will be your guide through the entire process. You  will be encouraged to communicate with your coordinator regularly and will be provided with his/her contact numbers. Your nurse coordinator will determine the testing required  and the liver transplant scheduler will contact you regarding your availability.

What To Bring
You will need to bring your insurance, Medicare or Medicaid card for us to copy for our records. You also must present a picture ID so we can verify your identity.
You also need to bring:
1. A list of your major medical problems and approximate years they developed.
2. A complete list of all the medications you are currently taking, including
dosages, frequencies and the reasons in which they are taken.
3. A copy of your previous medical records from the last two years, including  doctor’s progress notes, lab results, radiology reports, biopsy reports,  operative reports and any other results and/or consultation notes included in your file.
4. If you have had any imaging of your abdomen done, such as ultrasounds and/ or CT scans, please obtain the actual films (or CD) or a copy. Although we may have the written report, it is optimal for our physician to be able to view the actual images.
5. If you have had a liver biopsy, you may be asked to obtain the actual slides from the facility where the biopsy took place so that our pathologist can review them. If you can easily obtain them, please bring them to your
appointment.
6. Most importantly, please bring a list of the questions you would like to ask us.
It will be easier for you if you have a family member who can come with you to this
appointment – there will be a lot of information given to you during the evaluation. One
of the important aspects of undergoing a liver transplant is having people around you to
help you in your recovery. We need to meet these people so they too can be educated
about what you will need. Our Social Worker will also want to meet with a family
member or friend who is your close support.  Your Transplant Coordinator will call you after all your results have been received and
have been reviewed by our team at our Candidate Selection Meeting. This is a meeting of the whole team to review your case and to make a decision about transplant for you.  The liver transplant selection committee meets weekly. Within a week or two after we have received all the results of your tests, you can expect to hear from us. We will first get clearance from your insurance carrier before we place you on the waiting list. Once
we do, you will get a letter in the mail telling you this. We will also send a letter to your referring physician and/or primary care physician. If you do not receive a letter from us, you should call us.
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Decompensated Cirrhosis

Decompensated cirrhosis means that the liver is extensively scarred and unable to function properly. People with decompensated cirrhosis eventually develop many symptoms and complications that can be life
threatening.

Symptoms and Complications of Decompensated Cirrhosis
Patients with decompensated cirrhosis develop a variety of symptoms such as fatigue, exhaustion, loss of appetite, nausea, jaundice, weight loss, stomach pain, impotence, bruising and bleeding, and other potentially life threatening symptoms. Complications will also develop because the liver is unable to perform many functions.

When the liver completely breaks down and is unable to perform its job, it is called end-stage liver disease (ESLD). The goal at this stage is to try to manage complications due to a deteriorating liver. Currently, the only potentially effective treatment is a liver transplant.

"This will be her first full work up." She should have had a work up as soon as she had signs of ascites. Ascites (fluid build up usually in the lower legs and abdomen) is usually the first sign of decompensated cirrhosis. This doctor's lack of knowledge is making her suffer more than she has to. She should be on a low sodium diet. No more than 2,000 mg of sodium per day and diuretics to manage her ascites. Spironolactone and furosemide. NOTE: NSAIDs should not be used in patients with cirrhosis and ascites. Non-steroidal anti-inflammatory drugs. (NSAIDs) are contraindicated in patients with ascites because of the high risk of developing further sodium retention, hyponatremia, and renal failure. (ibuprofen, aspirin, etc).

" I read earlier about some supplements she can take."  
N. She should not take any supplement herb or vitamin without the transplant doctor approving it. Many of these things can be toxic to the liver when the liver is failing and could speed up her condition.

"What about juicing? "
Again she she should take nothing that is not approved by the liver transplant center. Your Aunt is dying from liver disease and her liver can not take any more stress.

Is there anything we can do?
Getting her to a transplant center is her only hope for living. The sooner she is in the system the better. Even day her condition is not managed properly is more suffering that she will have to endure. She will suffer enough just waiting for a liver. There is no point in having she suffer any more than needed. She needs to to referred to a liver disease specialist, Hepatologist at a liver transplant center now. It is her only chance for surviving.

Good luck!
Hector
1840891 tn?1431551393
I'm so sorry to hear of your aunt's poor health. I can't add any information beyond the excellent and very thorough advice you've received above, but I just want to encourage you in following the above advice. The two previous posters really know what they are talking about, having lived through it while seemingly soaking up more knowledge about these problems than most doctors ever manage to learn in their training. Well, I don't really know that, but they certainly know more than a great many of the doctors we hear about on this forum. Get your aunt to a hepatologist at a liver transplant center ASAP. And bless you for caring so much for her, she will need your help. If possible one of you should accompany her to all the doctor appointments. In all probability there will be too much information for her to remember, much less assimilate and make decisions about. Even the smartest have trouble with that when we are sick and emotionally freaked out by our own illness. She would benefit greatly from having someone else to help gather the info, to ask good questions, and then to help her consider it all after her appointment is over. Best wishes!
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