Aa
End Stage Liver Cirrhosis
Hi all,
My name is Amy. My father is currently on the liver transplant list and has been going through the process of end stage liver cirrhosis. He has had many complications, such as hepatic coma, encephalopathy, yellowing of the skin, low sodium and so on.
My question is, has anyone experienced or know someone who has experience an electricity type feeling going though their body with this disease? About a week ago my dad's Dr recommended he take some melatonin to help him sleep. Since then he has been complaining of feeling like electric shocks are going through his body. He has an appointment with the Dr tomorrow to talk about this but I wanted to see if anyone else has experienced this.
My name is Amy. My father is currently on the liver transplant list and has been going through the process of end stage liver cirrhosis. He has had many complications, such as hepatic coma, encephalopathy, yellowing of the skin, low sodium and so on.
My question is, has anyone experienced or know someone who has experience an electricity type feeling going though their body with this disease? About a week ago my dad's Dr recommended he take some melatonin to help him sleep. Since then he has been complaining of feeling like electric shocks are going through his body. He has an appointment with the Dr tomorrow to talk about this but I wanted to see if anyone else has experienced this.
COMMUNITY LEADER
Hi Amy.
I did not experience what I think you mean nor has everyone else I know mentioned it. But keep in mind we are all different, unique, in how our advanced cirrhosis manifests itself and how we experience our illness. We all have different experiences at different times with whole panoply of sensations which we often sum up as feeling miserable, unwell and amounts to a combination of physical and mental suffering. So in truth we can have just about any experience as our liver's fail and other body systems fail to function normally along with the liver.
As Nan mentioned, any substance we take into our body can have effects that wouldn't normally appear in someone who liver is still fully functioning. The liver is involved with the absorption and processing of substances going through our GI track and is also responsible from the removal of substances including toxins from our blood. When this isn't working properly we can experience many different effects.
This can be seen as the patient experiences wasting. While some of it may be due to the inability to eat it is also caused by the inability of a failing liver to be able to absorb the nutrients such as protein to maintain our muscle mass. Many patients are reduced to skin and bones when there MELD scores are in the 30s which can be quite shocking to someone who has never seen these effects of a poorly working liver.
Hormones such as melatonin also may not be properly processed. We know that with advanced cirrhosis our own body hormones do not function normally as the paths that hormones are disrupted by a poorly functioning liver. Us males lose our libido and sex function with advanced cirrhosis. Testosterone can no longer be processed properly and we lose our body hair and can develop gynecomastia, enlargement of the breasts. This is because we are living on female hormones such as estrogen rather than the normal balance of hormones with male hormones being predominant.. Spider angioma, those small swollen blood vessels that speed out from a central point on the skin which is common in cirrhotics are also common in woman taking estrogen or who are pregnant. They are associated with estradiol levels.A female hormone. Also some drug absorption and removal is changed when a person has advanced cirrhosis. Drugs can take may times long to clear the body. After many of my liver cancer treatments I needed opiates to relieve the pain of the procedure (TACE) and was commonly given IV morphine of dilaudid. Normally the opiate would be removed from the blood by the liver in a matter of hours but when the liver is functioning poorly as mine was I would stay high for about 2 days afterwards as the drug was very slowly removed from my system. When we receive our donor livers all of these issues disappear and are body stay to function normally again. The miracle of transplant.
When our livers are not able to perform all of its normal functions many other body systems also begin the not work properly as we see with the complication of cirrhosis, ascites, HE, varices and collateral veins, etc. etc.
The good news is the liver transplant fixes all of these issues. Once we have a working liver again in our body these issues normally disappear literally overnight or whenever the transplant surgery has been done. After living with all of these complication of liver disease for many years it is truly amazing to wake up after transplant and realize that you no longer have these issues to live with. It took me many months for my mind to get used to the idea of me not having cirrhosis and a failing liver when in fact I now have a fully functioning 36 year old female liver that is in perfect health. The misery and suffering (including problems sleeping) your father is now going through unfortunately is the price we all had to pay in order for us to get our new liver and new chance at life. I can tell you that for myself and my many transplant friends, we all are so grateful to feel this good again and not be suffering physically or mentally everyday for many years on end. I can tell you I haven't felt this healthy and strong in at least ten years. The whole journey to transplant and recovery is different for each of us. But we all can agree that we cherish each day more than many knowing just how tough life with a progressive life-threatening illness and we are thankful for our good fortune to still be here (!) sometimes despite the odds and feeling better than we could have imagined in our wildest dreams.
Hang in there. I am sure your father's doctor will try their best to manage his symptoms until he can get his new liver and new life.
Hector
I did not experience what I think you mean nor has everyone else I know mentioned it. But keep in mind we are all different, unique, in how our advanced cirrhosis manifests itself and how we experience our illness. We all have different experiences at different times with whole panoply of sensations which we often sum up as feeling miserable, unwell and amounts to a combination of physical and mental suffering. So in truth we can have just about any experience as our liver's fail and other body systems fail to function normally along with the liver.
As Nan mentioned, any substance we take into our body can have effects that wouldn't normally appear in someone who liver is still fully functioning. The liver is involved with the absorption and processing of substances going through our GI track and is also responsible from the removal of substances including toxins from our blood. When this isn't working properly we can experience many different effects.
This can be seen as the patient experiences wasting. While some of it may be due to the inability to eat it is also caused by the inability of a failing liver to be able to absorb the nutrients such as protein to maintain our muscle mass. Many patients are reduced to skin and bones when there MELD scores are in the 30s which can be quite shocking to someone who has never seen these effects of a poorly working liver.
Hormones such as melatonin also may not be properly processed. We know that with advanced cirrhosis our own body hormones do not function normally as the paths that hormones are disrupted by a poorly functioning liver. Us males lose our libido and sex function with advanced cirrhosis. Testosterone can no longer be processed properly and we lose our body hair and can develop gynecomastia, enlargement of the breasts. This is because we are living on female hormones such as estrogen rather than the normal balance of hormones with male hormones being predominant.. Spider angioma, those small swollen blood vessels that speed out from a central point on the skin which is common in cirrhotics are also common in woman taking estrogen or who are pregnant. They are associated with estradiol levels.A female hormone. Also some drug absorption and removal is changed when a person has advanced cirrhosis. Drugs can take may times long to clear the body. After many of my liver cancer treatments I needed opiates to relieve the pain of the procedure (TACE) and was commonly given IV morphine of dilaudid. Normally the opiate would be removed from the blood by the liver in a matter of hours but when the liver is functioning poorly as mine was I would stay high for about 2 days afterwards as the drug was very slowly removed from my system. When we receive our donor livers all of these issues disappear and are body stay to function normally again. The miracle of transplant.
When our livers are not able to perform all of its normal functions many other body systems also begin the not work properly as we see with the complication of cirrhosis, ascites, HE, varices and collateral veins, etc. etc.
The good news is the liver transplant fixes all of these issues. Once we have a working liver again in our body these issues normally disappear literally overnight or whenever the transplant surgery has been done. After living with all of these complication of liver disease for many years it is truly amazing to wake up after transplant and realize that you no longer have these issues to live with. It took me many months for my mind to get used to the idea of me not having cirrhosis and a failing liver when in fact I now have a fully functioning 36 year old female liver that is in perfect health. The misery and suffering (including problems sleeping) your father is now going through unfortunately is the price we all had to pay in order for us to get our new liver and new chance at life. I can tell you that for myself and my many transplant friends, we all are so grateful to feel this good again and not be suffering physically or mentally everyday for many years on end. I can tell you I haven't felt this healthy and strong in at least ten years. The whole journey to transplant and recovery is different for each of us. But we all can agree that we cherish each day more than many knowing just how tough life with a progressive life-threatening illness and we are thankful for our good fortune to still be here (!) sometimes despite the odds and feeling better than we could have imagined in our wildest dreams.
Hang in there. I am sure your father's doctor will try their best to manage his symptoms until he can get his new liver and new life.
Hector
Thank you for your prayers. The support we receive here really helps.
I just want to add that the advice I offer is strictly based on personal experience with my husband. I have also researched and learned a great deal from the internet. What I have learned most of all is that although the doctors do their best, they do not necessarily have all the answers. Every patient is an individual and may respond differently to a medication or treatment. So the most important thing is to pay attention. You are with your father much more than the doctors are. Take notes and inform the doctor what you observe. That will provide them with much needed information on how to best treat your father safely.
Best wishes,
Nan
I just want to add that the advice I offer is strictly based on personal experience with my husband. I have also researched and learned a great deal from the internet. What I have learned most of all is that although the doctors do their best, they do not necessarily have all the answers. Every patient is an individual and may respond differently to a medication or treatment. So the most important thing is to pay attention. You are with your father much more than the doctors are. Take notes and inform the doctor what you observe. That will provide them with much needed information on how to best treat your father safely.
Best wishes,
Nan
Thank you for your comment. I pray the medication works for your husband. They were going to start my father on a medication as well that cures the hepatitis. They decided since he is so far into the liver disease #1 care taker so I know a lot. We are in Washington state and his meld sore is 25. I think they are re calculating it though. The transplant coordinator said it would go up higher in June. They have been transplanting people at 28-30. My father is a large man so they say it's hard to find a match in body size for him. I just pray daily for his transplant to happen?
As for the melatonin he only took it the one night. He actually went into the ER today (not one associated with his liver dr) They told him it is probably nerves. His ammonia is good and so is everything else other than his sodium and magnesium. His base line sodium number is lower than the average person and the Dr could not understand that. They also told him to take a multi vitamin. I appreciate your information about this. I am going to make a phone call to the liver Dr tomorrow and talk with him about these shocks and the medication the Dr gave him today. I worry not all Dr's know about liver disease and what should and should not be taken. I guess you can say I am skeptical people who don't specialize in liver disease or have experience with it.
Thank you again for you comment. It's nice to talk to someone else who knows how complicated this can be. Again I am praying for you and your husband.
As for the melatonin he only took it the one night. He actually went into the ER today (not one associated with his liver dr) They told him it is probably nerves. His ammonia is good and so is everything else other than his sodium and magnesium. His base line sodium number is lower than the average person and the Dr could not understand that. They also told him to take a multi vitamin. I appreciate your information about this. I am going to make a phone call to the liver Dr tomorrow and talk with him about these shocks and the medication the Dr gave him today. I worry not all Dr's know about liver disease and what should and should not be taken. I guess you can say I am skeptical people who don't specialize in liver disease or have experience with it.
Thank you again for you comment. It's nice to talk to someone else who knows how complicated this can be. Again I am praying for you and your husband.
Sorry to hear about your father's medical condition. I can not share any specific information related to your question (electric shocks). What I do want to say is your father has some very serious complications related to his end stage liver disease. That in itself signals proceeding with caution when taking supplements. As his liver is not functioning well at all, everything he takes into his body creates toxins. This is why he has serious hepatic encephalopathy.
My husband who is post transplant with cirrhosis of the new liver, is currently on a treatment to cure him of Hepatitis C. I can not begin to tell you the trouble he has had over the last 20 weeks as a result of interactions between medicines, including a multivitamin. Your father has decompensated cirrhosis meaning his liver is literally on its last legs.
I am sure his doctor meant well in recommending Melatonin to help him sleep but your father must listen to his body. He should stop the melatonin and see if the electric shock symptoms he is having stop, If so, obviously melatonin should be on his "do not take" list.
What is his MELD score? Have you talked to the doctor about how close he is to getting a liver? Where you live does have a major impact on the answer to this question. We live in NYC and had to relocate to NC in order for him to get his transplant faster.
I wish you and your father the best as you move forward in this journey for a new liver.
Nan
My husband who is post transplant with cirrhosis of the new liver, is currently on a treatment to cure him of Hepatitis C. I can not begin to tell you the trouble he has had over the last 20 weeks as a result of interactions between medicines, including a multivitamin. Your father has decompensated cirrhosis meaning his liver is literally on its last legs.
I am sure his doctor meant well in recommending Melatonin to help him sleep but your father must listen to his body. He should stop the melatonin and see if the electric shock symptoms he is having stop, If so, obviously melatonin should be on his "do not take" list.
What is his MELD score? Have you talked to the doctor about how close he is to getting a liver? Where you live does have a major impact on the answer to this question. We live in NYC and had to relocate to NC in order for him to get his transplant faster.
I wish you and your father the best as you move forward in this journey for a new liver.
Nan
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