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Avatar universal

Ascites, TIPS

My mom was 51 yo, had decompensated cirrhosis for 5 years, ascites for 3.5 years, was diabetic.  When her ascites got worse and she had to get drained every week 10-12 liters of fluid (it worsened quickly and she probably had to do it twice a week later), she underwent TIPS which went horribly wrong for her and she died a month and a half later.. :((  I was told that the liver got worse after  TIPS and it caused the death.. Prior to TIPS, her MELD was 14, and she wasnt a transplant candidate due to decompensated diabetes complications. I just want to understand and get nothing but truth. Why did it happen? What most likely would happen next if she chose not to do TIPS, and how would the things develop later? If she didnt underwent TIPS, what would be her remaining time on earth? (please mention the most likely period and maximum of the maximum, considering all above).
13 Responses
Avatar universal
Forgot to mention.. the cause of cirrhosis was hepatitis C.
446474 tn?1446347682
COMMUNITY LEADER
I am very sorry to hear about your mothers death from hepatitis and liver disease. It must be terribly upsetting and sad.

I will tell you the reality of hepatitis C induced decompensated cirrhosis and its consequences from my own personal experience with it and from the experiences of the hundreds of people I have met over the years with this terrible disease. Whether it is "the truth" I think that is up to everyone to decide from themselves based on their own experiences and values.

Unfortunately death is far too often one of the consequence of this horrible disease. I do volunteer work at my liver transplant center and sadly see too many people like yourself, loved ones, who suffer horribly because of this disease that not only destroys the patient's life, but the lives of those close to them as well.

Advanced cirrhosis is a life-threatening condition. The reality is - at any time a person can succumb to it. A simple infection can be deadly for someone with decompensated cirrhosis. People can bleed out because of the inability for their blood to clot. Others ca go into a HE coma and never come our of it. This is the day to day reality of this disease that most people are not aware of unless they work with people with advanced cirrhosis. I myself almost died more than once from complications of my cirrhosis and liver cancer before I received my liver transplant. Not everyone is so lucky as I am, sadly.

In order to manage our cirrhosis and its complications we usually have to do things we normally wouldn't choose to do to stay alive. Having a TIPS procedure is a common treatment many of us needed to stabilize the complications from our cirrhosis. Of course there is always some risk to any procedure where someone goes inside our body with medical instruments. Especially when we are ill already and our health is comprised. But most of us chose to take the risk in hope of getting better or at least not getting worse. That is what we all hope for anyways. So we agree to take the risk. For TIPS or any Interventional Radiology (IR) procedure, we all have to sign paperwork saying we accept the risks (which are spelled out in writing on the paper) before a procedure will be performed. It is always a balance between risk vs benefit. We all choose what appears to be the best option we have at the time and hope for the best. That is all any of us can do as human beings. That is what most of us do. (I have signed so many of those papers I couldn't even begin to count them all).

But there are some people who choose not to have procedures done as well. I have known people who didn't want a procedure even though they knew they would die without it. That is for each of us to choose based on what we think is right for us. As we are the one who has to suffer the consequences either way.

From my experience meeting over 500-600 folks with advanced liver disease at my transplant center over the years, there is no rhyme or reason why some people survive this disease and others don't. I have seen far too may good people who did all of the "right things" not survive. I have seen many people who appeared to be doing well one day, die the next from their cirrhosis and its complications. This is the unfortunate and cruel reality of this horrible life-threatening disease.

I am sorry that you lost your dear mother. It must be a truly horrible experience which I can't even begin to imagine which you are going through. I hope you can find a way to find peace with it in your own time.

I hope that more people will get tested for hepatitis C infection and get treated so they don't have to experience what you have had to because of this virus and its deadly consequences.

Be well.
Hector
Avatar universal
Thank you for your reply. If I may ask, can you give a more specific answer to my question if you can? If she chose not to do TIPS, how most likely would the things develop later? and what would be her remaining time on earth? (most likely period and maximum period in this condition)..
446474 tn?1446347682
COMMUNITY LEADER
From what I have seen in other patients, if she didn't have the TIPS procedure she would likely have died from one or more complications of her End-Stage Liver Disease relatively soon anyway. TIPS is only a temporary fix, at best, it doesn't stop the inevitable liver failure.

No one has a crystal ball and can say with certainly, exactly when any individual will succumb to their disease and certainly not anyone who wasn't her treating doctor and doesn't know the full circumstances of her illness.

The only option to continue living for someone with End-Stage Liver Disease is a liver transplant, and sadly, like many people, she didn't have that option.

I was lucky to have my life saved because I had that last option.
I'm sorry for your loss.
Hector
Avatar universal
Also, she didnt watch her sodium intake at all, but was on 200/80 diuretics and later maybe on even higher diuretics dosages.. Her sodium levels in blood were pretty low though, about 125, which is considered hyponatremia..
she had a history of 3.5 years with ascites and lately it was worsening rapidly..
Considering all above, was it "a must" for her to be on low salt diet? and if she watched her sodium intake, could it result in less frequent paracentesis than once a week?
446474 tn?1446347682
COMMUNITY LEADER
The first-line treatment of patients with cirrhosis and ascites is dietary sodium restriction (2000 mg per day) followed by the use of oral diuretics. Without sodium dietary compliance, diuretics and even paracentesis will be ineffective in managing ascites and the fluid will continue to accumulate.

I experienced this myself may times over the many years I had ascites. If I ate too much sodium one day by mistake the next day I would begin to swell, starting with my lower legs and then I would see the swelling in my abdomen. This was despite being on my daily diuretics. Only by carefully making sure I maintained a low sodium diet after that, would I slowly see the ascites and edema subside.

Hyponatremia, which is defined as a serum sodium level of less than 135 mEq/L and is considered severe when the serum level is below 125 mEq/L. Luckily low sodium levels occur only in a small percent of cirrhotic patients (~6%) with ascites. Unfortunately data shows that for those waiting for liver transplantation who have this condition, they have a high risk of mortality despite having a low MELD score (indicating adequate liver function) which prevents them from getting a liver transplant.

In summary without proper management of sodium intake, ascites can't be controlled by any treatment, including multiple serial paracentesis.

Hector
Avatar universal
Sadly, I didnt knew then its THAT important, I would give my all to combat that habit.. Anyway, I was powerless to make her anyhow to follow low sodium diet.. She most definetly knew that, but her meal mostly consisted of sausages, salads with lots of salt in it, and preserved ready meals.  Her doctor knew that too, still he stated that her ascites was resistant to treatment, and he said leave her alone and let her do what she wants coz she hasnt got much to live anyway, coz she wasnt transplant candidate.. May I ask, for how many years u had history of ascites? and how frequently u had to be drained in the end? have u underwent TIPS or not?
446474 tn?1446347682
COMMUNITY LEADER
I had ascites from the summer of 2009 until my transplant in November of 2013. All patients with cirrhosis are explicitly told not to eat processed, high sodium foods. Frankly I can't even imagine any cirrhotic with ascites eating the foods you mention.

Red meat itself, without the sodium factor, can trigger hepatic encephalopathy (HE) in many patients with cirrhosis, which can lead to various mental/behavioral issues and can led to fatal coma as well. So if she had HE that was a very dangerous combination of foods.

Fortunately for myself, I was able to control my ascites through diet and diuretics most of the time. I only needed paracentesis a few times. Many of my friends who have had liver transplants, have had countless paracentesis procedures and typically needed more and more large volume paracentesis as their cirrhosis worsened and they got closer to transplant.

I was also lucky and didn't need a TIPS procedure unlike many if not most of my friends, who needed TIPS to stabilized their condition long enough to survive until getting their transplants.

Sadly, we can't do "it" for anyone else. Patients have to realize they have a life-threatening disease and take personal responsibly to follow the doctor's orders if they want the best outcome. Doctors, nurses, family members, friends can't do it for them.

I am sorry you have had to go through this tragic experience. Please realize you did all that any of us can do for a loved one.

Hector
Avatar universal
she was also a diabetic, and with time as the desease progresses ascites worsens and becomes refractory.. At the beggining she had to be drained like once a 6 months but lately once a week.. so maybe even if she was on low sodium diet it wouldnt really help?
Avatar universal
also her doctor stated that her ascites is refractory to therapy, and suggested the TIPS, although he knew she isnt on a low sodium diet.. Doesnt hyponatremia thing mean that the sodium in her blood was low anyway?  And if she was on diet how you think could it help? less frequent paracentesis? like once in two weeks instead of every week?
446474 tn?1446347682
COMMUNITY LEADER
Not being a hepatologist myself nor privy to all of the particulars of your mother's cirrhosis and its complications, never mind her other health issues, I can't even venture to guess what would have happened if circumstances were other than they were.

Hector
Avatar universal
4 years ago she needed paracentesis like once  half a year, then once a month and lately even once a week wasnt really enough.. so it looked like her sodium intake remained more or less the same, but as time passed, the ascites got worse and worse..
446474 tn?1446347682
COMMUNITY LEADER
Liver disease is a progressive disease. So unless the underlying cause of the cirrhosis is stopped before the disease becomes irreversible, the cirrhosis will continue to progress over time and its complications and symptoms will likewise worsen. So worsening ascites or other complications of decompensation are to be expected.

Once the liver decompensates, the only option to prevent eventual liver failure and death is liver transplantation.

Hector
3 Comments
why u think the TIP went so wrong, maybe because
because her liver condition was already to bad and she was too weak? and she wouldnt have remained long even without the TIPS?
considering that her MELD was 14-15
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