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Cirrhosis End Stages?

My sister is hiv-positive, she has been diagnosed with liver cirrhosis.  She was a drug addict for 21 years of her life.  But it seems the cirrhosis was caused by the hiv, not the drugs.  Whatever the case, I need some answers please.  We were told in February this year that her liver is no longer functioning.  Her cd4 count has improved from 112 to 508 and her viral load has dropped from something like 13000 to 1500.  They did a liver biopsy about 2 years ago, and that just confirmed that she had severe cirrhosis.  More recently she has had a gastroscopy and mri done.  They also did some other biopsy, which we  are not sure what it was from.  But they said they could not actual find her pancreas on the ultra sounds or mri, they said her glucose was something like 30, her bile ducts were blocked and they then did some procedure to "brush" and clean the bile ducts?  Also said that her kidneys have now been affected.  They keep on telling her to come back in two to three weeks time, it's as if they are hoping she'll die before they have to actually start any kind of treatment.  She is only on ARV's for the hiv, they are not giving her any type of treatment for the cirrhosis.  She has been swelling in the abdomen a lot and then battles to breathe.  But now she is complaining that all her limbs are sore.  She has pain in her neck, shoulders, arms and legs and are extremely tired and suffers shortness of breath.  Is this at all any indication that she is actually nearing the end?  I know that her condition is very serious, and being HIV positive is also aggrevating it.  Please if anybody can help me with any kind of indication of what to expect from here.  Is the limb pains caused by the liver failure?
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446474 tn?1446347682
COMMUNITY LEADER
Your sister needs to be seen by a specialist in liver disease. A hepatologist (liver specialist) or a minimum a gastroenterologist (specialist in the digestive system). They are the only doctors that can diagnosis the extent of her liver disease (cirrhosis) and then help her to manage her the complication and symptoms of her cirrhosis.

HIV does not cause cirrhosis perhaps she is also coinfected with a form of hepatitis that can cause liver disease and ultimately cirrhosis after many decades of infection? Only a liver specialist and properly diagnosis the cause of her illness and if treatable treat it or at least manage some of the symptoms.Unfortunately there is a point at which the cirrhosis is irreversible and the option to continue living is a liver transplant. Whether she has reached that point only a liver disease specialist would know what options are available to her at this point.

I am not familiar with how the South African health care system works so you will need to navigate the system so she gets the proper care she needs.

The best thing you can do for your sister is to help her to get to see a specialist in advanced liver disease (hopefully a hepatologist who works for a liver transplant center) so that she can get proper treatment and prevent her liver disease from getting worse than it already is. Liver disease is a progressive disease that will only get worse with time. The sooner she gets the medical help she needs the better her prognosis will be.

The people at the Wits Donald Gordon Medical Centre in Johannesburg may be able to help you find the services your sister needs. They are doing some of the leading work in liver disease in South Africa.

JOHANNESBURG
Wits Donald Gordon Medical Centre (Private)
21 Eton Road
Parktown
Johannesburg
2193
Phone (011) 356-6000

WDGMC’s Transplant Unit (They perform liver transplantation)
(Tel) 011 356 6488

Best of luck to you and your sister!
Hector
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Avatar universal
Hi Hector,

Thank you for your response.  Thank you for the information.  I will contact WDMGC.  She has been seen by a liver specialist and gastroentorologist (Professor).  But unfortunately, it seems that they are just prolonging getting her onto treatment,  Every time she goes to the liver clinic at the Johannesburg General Hospital (where she was referred to), they take more bloods, and does some scan or something, then tell her to come back in two to three weeks time.  It is extremely frustrating.  They only once spoke about doing dyalisis.  But nothing has come of it.  Unfortunately, in South Africa if you do not have a medical aid and you are unemployed, you just have to fall into the system, which is not the best in the world.  It just seems like they don't want to waste any time and money on her, she's going to die anyways, so why rush the process and get her some treatment.  It is very sad actually.  I hope that we will be getting some answers soon.  It is absolutely horrible not actually knowing what is going on.  I have been doing research and know that her condition is very serious.  I know that she will not get a liver transplant, unless it is from a living donor.  I'm afraid from everything that I have read and heard, there is not much time left for her.  Will let you know what happens from here.  And I hope that me posting here, will at least be able to assist other people in South Africa, especially, where the health care is not so great. Thank you and God Bless.
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1475202 tn?1536270977
COMMUNITY LEADER
I feel so bad for your family and your sister. I don’t have much advice since Hector is always so thorough but maybe this can help a little bit.  

“But now she is complaining that all her limbs are sore”

As the abilities of her liver continue to decline it is less capable of removing toxins from her body. Often these toxins build up in the muscles causing them to ache. A temporary solution would be to increase blood flow to these muscle groups. She can do this by doing light cardiovascular exercise (per her doctors approval) or simply stretching. As she increases the blood flow to the muscle this will push out the built up toxins reliving her of the muscle ache. Depending on her advanced status normally pain relieving medication should be avoided.

I hope this will help and I wish the best,

Randy
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Avatar universal
Thank you Randy.  I will tell her to try that.  She saw the HIV doctor yesterday.  He said her viral load is very high and that indicates that she has some kind of infection.  He said that could also be the cause of her aches.  He also said that all her organs are taking major strain.  But there is nothing else he can say in terms of that.  She has to be at the lover clinic again on the 2nd of July.  I really hope that they will now just get to a point and decide whether they are going to start some sort of treatment.
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446474 tn?1446347682
COMMUNITY LEADER
Maybe I can help you to understand a little more about of the information of your sisters liver disease. By the way I am still infected with chronic hepatitis C which was the cause for my liver disease and led me to be listed for liver transplantation here in San Francisco about 4 years ago for my advanced cirrhosis the liver. So I have lived for years with the complications of cirrhosis that your sister is experiencing. While I was on the waiting list…in 2011 I developed liver cancer and needed 8 different cancer treatments over 2 ½ years for me to finally get a liver transplant on November 16, 2013. So I am very familiar with the patient’s side of this journey.

Since I was disabled for many years I studied all I could about hepatitis C, liver disease, liver transplantation and liver cancer. I now co-lead our hepatitis C support group at my transplant center and have been a core member of our liver transplant support group for the past 4 ½ years as well as a member of a cancer support group for those of us who have been diagnosed terminal. I also try to provide support and encouragement to hospitalized patients pre and post transplant at our liver transplant center and work with our transplant doctors, nurses and social workers involved with transplant. So I have been very involved with the liver transplant community here for many years.

“clean the bile ducts” sounds like they did an ERCP? Endoscopic Retrograde Cholangio Pancreatography. I assume she had jaundice (a yellowing of the whites of the eyes) or pain in the abdomen? Is that correct? Cirrhotic patients may develop bile duct issues. ERCP can be helpful when there is a blockage of the bile ducts by gallstones, tumors, scarring or other conditions that cause obstruction or narrowing (stricture) of the ducts.

You say the she is being seen every 2-3 weeks. So you know if they are monitoring her ascites (fluid retention in her abdomen)? Ascites can be very debilitating as you describe. Along with the fatigue of cirrhosis itself it can add many pounds/kilos of weight to a person and when there is a lot of fluid it can make it difficult to breathe as the fluid pushes against the diaphragm and lungs.
Proper treatment to help manage ascites is a low sodium diet and diuretics Spironolactone and Furosemide/Lasix. When this does not reduce the accumulation of fluid then periodic paracentesis is perform where the fluid is examined for infection (infection is a dangerous risk of ascites) and the excess fluid is drained out of the body. If the ascites if not under control the procedure will need to be repeated. Is this is what is happening with your sister? So you know?
If so this is proper treatment. If her liver disease is very advanced, End-Stage Liver Disease it is possible that the ascites can not be controlled by sodium reduction and diuretics.

I should mention that fatigue is the number 1 symptom of advanced cirrhosis. We always seem to be “running on empty”. When we then experience the other complication of our illness such as ascites it is additional physical and mental stress that just uses up what little energy we do have. This is what is meant when it is said that liver patients with decompensated cirrhosis and End-Stage Liver Disease have a poor quality of life. There is a lot of physical and mental suffering that no one who hasn’t been there can’t fully understand. But others can support us and that can mean everything when so much else hurts. So you can make a big difference just by caring. The doctor’s job is to manage the disease as best they can a caregiver’s “job” is to care. Believe me without our caregivers myself and my friends would not be here today if we didn’t have our family and friends there when we were fighting the toughest battle of our lives. As we say in the transplant community “No one does this alone.” We rely on the doctors and nurses to heal our physical wounds and our friends and family to help us heal our mental pain.

From what I can understand it sounds like you have not been fully informed about the degree of her liver disease and what is being done to manage her condition and what her prognosis is. Advanced liver disease is a very complex illness and each person will have their own particular situation and set of complications and symptoms from their cirrhosis. I would recommend, if your sister will allow you, going to her appointments to learn more about what is going on and asking questions so you can better support her in managing her illness. Unfortunately many patients really don’t understand their condition themselves. When they are ill it is more difficult to communicate and interact with the doctor. It is always a good idea to have someone with us at doctor appointments not only for moral support but as a second set of eyes and ears.

Perhaps you could help her to better manage her illness by helping her do all she can to stay as healthy as possible for as long as possible. It is possible to live some limited sort of life with even advanced cirrhosis for some time although the quality of life is greatly affected by both the physical and mental aspects of living with a failing liver. Here is the US although liver transplantation is common, in certain parts of the country like where I live many people have to live with their liver disease for many years before they are ill enough to get a transplant because organs are in such short supply. Here in the San Francisco Bay Area people on the waiting list usually need to be close to death to receive a donor cadaver organ. This forces us to learn to live as best as we can with our advanced cirrhosis until we get to the top of the waiting list which usually means a MELD score in the mid 30s.

I don’t know how advanced your sisters liver disease is but because she has ascites it means it is possibly irreversible as ascites is usually the first sign of decompensation. Meaning the liver can no longer perform all of its many functions because so much of it is only scar tissue and not working cells.
So you know if it has been determined what has caused her cirrhosis? Has she been tested for hepatitis? Many people who are infected with HIV are co-infected with hepatitis C. If she is infected with hepatitis C and that has caused her cirrhosis if her cirrhosis is not too advanced their may be a chance she could treat her hepatitis C, cure her hepatitis and stabilize her liver disease. In my opinion this is something worth finding out about. It could improve her prognosis and reduce the complications of her cirrhosis that she is experiencing.

"Sofosbuvir/ledipasvir produces early cure for 100% of people with HIV and HCV co-infection"
http://www.aidsmap.com/Sofosbuvirledipasvir-produces-early-cure-for-100-of-HIVHCV-coinfected-patients/page/2845842/

Personally I would stay hopeful. Something can always be done no matter how difficult the situation. Even if a condition is terminal and is something we can’t change we can choose to change ourselves and find some peace and acceptance which I think always allows us to have hope.

I wish you and your sister strength and hope no matter what you or she decides to do.

Hector


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Avatar universal
Hi Hector,

I'm sorry.  I see my messages to you didn't go through.  I'm not quite sure what happened.  Thank you very much for your response and the information.  I tried to do a MELD score this morning, but they're asking for INR.  I don't see that on her blood results.  If I give you the blood results, will you be able to help me figure out at what stage she is.  She is in a hell of a lot of pain, she has become extremely depressed and she has extreme pruritis.  She has been placed on the transplant list.  I wanted to be a living donor for her, but she doesn't want me to do that.  She says that when she was sitting at the transplant clinic, these was little children, 11 and younger, and she would much rather have them getting livers than her.  The doctor told on her Saturday morning that it seems that her kidneys has been badly affected now as well.  Here is her results.

Liver Function Test
Bilirubin                                           3µmol/l
Bilitrubin conjugated                         2µmol/l
Total Protein                                       82g/l
Albumin                                             37g/l
Alkaline Phosphatase (ALP)              755u/l
Y-Glutamyl Transferase                     472u/l
Alanine Transaminase                        79u/l
Aspartate Transaminase                    57u/l

Tumour Markers
Alpha Feto Protein                        1.3µg/l

Please would you help me with these results.  I know which is low and which is high.  But I want to know what her MELD result and Child-Pugh results are.  I really appreciate you getting back to me.  It means so much to me.

Have a good day.

Kind Regards
Louise

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Avatar universal
I didn't mention that she is going back to the liver clinic on Wednesday.  I will be going with her.  At least I am going to try, as I have to take time off work and going there most times takes the whole day.  Her ascites seems to be under control.  You know what is really sad for me is to see how tired her eyes are.  They almost look lifeless.  If you understand what I am saying.  The doctor on Saturday told her that she is so proud of her, she cannot believe that my sister has not given up the fight a long time ago.  I don't think I mentioned that she also has emphysemea now.  So it really is a huge struggle now. My heart aches when I look at her.  She has not gained a lot of weight.  Well she has picked up about 10 kilos, which for us is brilliant as she was almost anorexic.  But she says that it is self inflicted.  She caused her liver and lung diseases, but the way she lived.The HIV she contracted from being raped.  She has to stay on her ARV's, but the doctor says the ARV's are definitely attacking her liver.  It is so frustrating.
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