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fiancé's ammonia is down but he's not waking up
Hi, Sorry this is long but I'm new here and trying to understand what to expect with my finacé's changed condition.
My fiancé has been diagnosed with ESLD and ESRD for about 3 years but had gone undiagnosed for quite a while (thanks Kaiser for "diagnosing" his problem as obesity and the "solution" lap band surgery). I have no idea what his MELD score or expectancy is... we always get the answer, "Just take your Lactulose, manage your diet, and you should be fine." /:|
He's had numerous episodes of HE where he's been hospitalized with ammonia levels around 100-300, they give extra Lactulose, and within a couple days he's discharged (sometimes he just spent several hours in ER when it was around 100 or below and was then fine). Since that was all it seemed to take, I asked the doctor if he could just take the extra dose himself. He said that was fine and it was manageable... until this month. I know there is no exact correlation between a specific NH3 level and specific symptoms/reactions, but what had been typical for him in the past is not happening...
Two weeks ago he became very anxious and was just a bit off. I took him into ER. His BP was a bit over 60/20 and his NH3 was 200+. His platelets were low so they gave him 2 units of blood. Instead of the NH3 quickly coming down like usual, it took a long time to come down. He would be unresponsive to weakly responsive to incoherent to combative. They sedated and restrained him; they said we wouldn't know if he comes out of it until he does. When the NH3 did come down to levels he was fine (i.e. a little shaky and forgetful) at before, he did not wake up right away. He was in ICU for a week and on observation 2 days or so.
He was out a week and I brought him back to ER five days ago. Again, high NH3 (~300), low BP (70/30), and low platelets . They gave lots of Lactulose and 3 units of blood (after 2 units they told me his platelets were 17,000 but not sure if that was the initial level or after giving the 2 units). Again, he would range from unresponsive to weakly responsive and coherent to incoherent and combative... even when the NH3 dropped to ~70 which use to be "okay."
His NH3 is now 33, they stopped the Ativan, but he is still out. A few times he would turn his head towards me when I talked to him, he tried to talk, and a couple times opened his eyes briefly.
The medical staff gives me mixed messages:
"it progressively gets worse"
"he should be fine if he takes his Lactulose"
"it's all part of the process"
"his ammonia wouldn't go this high if he was taking his Lactulose"
E T C...
I know I can't get black-and-white answers, but based on your experiences... what am I looking at here? What should I expect? Is this a typical progression of the disease and we aren't going back to "okay?"
Tomorrow is his 50th birthday. This is really torture. :(
My fiancé has been diagnosed with ESLD and ESRD for about 3 years but had gone undiagnosed for quite a while (thanks Kaiser for "diagnosing" his problem as obesity and the "solution" lap band surgery). I have no idea what his MELD score or expectancy is... we always get the answer, "Just take your Lactulose, manage your diet, and you should be fine." /:|
He's had numerous episodes of HE where he's been hospitalized with ammonia levels around 100-300, they give extra Lactulose, and within a couple days he's discharged (sometimes he just spent several hours in ER when it was around 100 or below and was then fine). Since that was all it seemed to take, I asked the doctor if he could just take the extra dose himself. He said that was fine and it was manageable... until this month. I know there is no exact correlation between a specific NH3 level and specific symptoms/reactions, but what had been typical for him in the past is not happening...
Two weeks ago he became very anxious and was just a bit off. I took him into ER. His BP was a bit over 60/20 and his NH3 was 200+. His platelets were low so they gave him 2 units of blood. Instead of the NH3 quickly coming down like usual, it took a long time to come down. He would be unresponsive to weakly responsive to incoherent to combative. They sedated and restrained him; they said we wouldn't know if he comes out of it until he does. When the NH3 did come down to levels he was fine (i.e. a little shaky and forgetful) at before, he did not wake up right away. He was in ICU for a week and on observation 2 days or so.
He was out a week and I brought him back to ER five days ago. Again, high NH3 (~300), low BP (70/30), and low platelets . They gave lots of Lactulose and 3 units of blood (after 2 units they told me his platelets were 17,000 but not sure if that was the initial level or after giving the 2 units). Again, he would range from unresponsive to weakly responsive and coherent to incoherent and combative... even when the NH3 dropped to ~70 which use to be "okay."
His NH3 is now 33, they stopped the Ativan, but he is still out. A few times he would turn his head towards me when I talked to him, he tried to talk, and a couple times opened his eyes briefly.
The medical staff gives me mixed messages:
"it progressively gets worse"
"he should be fine if he takes his Lactulose"
"it's all part of the process"
"his ammonia wouldn't go this high if he was taking his Lactulose"
E T C...
I know I can't get black-and-white answers, but based on your experiences... what am I looking at here? What should I expect? Is this a typical progression of the disease and we aren't going back to "okay?"
Tomorrow is his 50th birthday. This is really torture. :(
So sorry. I saw in your detailed post a couple steps up that It sounded like the end for him. I hope you have some support getting through this. My deepest sympathies.
I'm also saddened to see your fiancé has lost his battle. You obviously loved and stood by him in his final days. I know that he felt your strength even tho perhaps unresponsive and hopefully this brought him peace. I am so very sorry for your loss.
May you encounter brighter days ahead.
......Kim
May you encounter brighter days ahead.
......Kim
I'm so very sorry for you. I'm so sorry you lost your fiancé like this. I think you were awesome at the end for him. I know it was horrible for you to watch him in that way. My heart goes out to you. Thank you for sharing your story. Please send condolences to all that he touched in his life!
Kitty
Kitty
Thank you...
This morning he passed away. He went peacefully... his breathing just slowed until it stopped.
This morning he passed away. He went peacefully... his breathing just slowed until it stopped.
I'm really sorry that the medical community has let you down. I can only hope that your fiancé is not suffering and that the Morphine is managing his pain. I also recently went thru a similar situation with a non immediate family member and is so difficult to understand this horrific disease.
I know how heartbreaking all of this can be and sympathize with the sadness you must be feeling. You are obviously a loving care giver and I'm sure he knows you are with him at this time.
Warm wishes
.....Kim
I know how heartbreaking all of this can be and sympathize with the sadness you must be feeling. You are obviously a loving care giver and I'm sure he knows you are with him at this time.
Warm wishes
.....Kim
He was transferred home yesterday as anything the hospital would do would only be prolonging suffering. His platelets are too low to try to remove the fluid from his lungs (right lung collapsed) because the risk is so high he would bleed out on the table. The doctor said jis body is not processing the lactulose so it was stopped as was dialysis.
His oxygen saturation is low even while receiving O2. His blood pressure is verw and breathing, you could imagine, labored. He is receiving morphine to make him comfortable, which seems to be but for me this is absolute torture.
His oxygen saturation is low even while receiving O2. His blood pressure is verw and breathing, you could imagine, labored. He is receiving morphine to make him comfortable, which seems to be but for me this is absolute torture.
Thanks for the response... it does help.
We are in So Cal. He no longer has Kaiser. When he had to stop working he lost his insurance; now he has CareMore.
His prescribed dose of Lactulose was 30ml 3 times a day (but to cut it back a bit if he was losing too much fluid); I know he takes it but maybe he is not managing it properly with the correct measurement. In ICU they were giving him 45ml, then held it a day or two. They are starting it again tonight. This morning his NH3 was 30.
I don't know what his MELD score is. He was transferred to another hospital today (3x as far from me as where he was) and asked the ICU nurse if his chart had his MELD score; she had no idea what I was talking about. I will call her around 6:00a before shift change and ask her if the doctor can tell me his MELD score.
His BP has been bouncing around from 110/70 down to high 60s over high 30s. He is still not fully awake but is talking and making sense, though it's hard to understand a lot of what he says because he's so groggy. He looks worse but he communicates better.
I asked her if he was going to stay like this and she said she didn't know, that it was possible if they can't control the ammonia. She says they gave too much Ativan at the other hospital but also he should have come out of it already. Maybe these are refractory complications :(
They are going to do a CAT scan of the brain, check for Hepatitis as his eyes are yellowish (more so than they had been before this week), and ultrasounds of his abdomen and the leg with lymphedema.
He had seen a CareMore liver specialist that told us regarding a transplant, "He's a lousy candidate," due to liver and kidney failure plus the lymphedema in his leg keeping him above 200 pounds.
We are in So Cal. He no longer has Kaiser. When he had to stop working he lost his insurance; now he has CareMore.
His prescribed dose of Lactulose was 30ml 3 times a day (but to cut it back a bit if he was losing too much fluid); I know he takes it but maybe he is not managing it properly with the correct measurement. In ICU they were giving him 45ml, then held it a day or two. They are starting it again tonight. This morning his NH3 was 30.
I don't know what his MELD score is. He was transferred to another hospital today (3x as far from me as where he was) and asked the ICU nurse if his chart had his MELD score; she had no idea what I was talking about. I will call her around 6:00a before shift change and ask her if the doctor can tell me his MELD score.
His BP has been bouncing around from 110/70 down to high 60s over high 30s. He is still not fully awake but is talking and making sense, though it's hard to understand a lot of what he says because he's so groggy. He looks worse but he communicates better.
I asked her if he was going to stay like this and she said she didn't know, that it was possible if they can't control the ammonia. She says they gave too much Ativan at the other hospital but also he should have come out of it already. Maybe these are refractory complications :(
They are going to do a CAT scan of the brain, check for Hepatitis as his eyes are yellowish (more so than they had been before this week), and ultrasounds of his abdomen and the leg with lymphedema.
He had seen a CareMore liver specialist that told us regarding a transplant, "He's a lousy candidate," due to liver and kidney failure plus the lymphedema in his leg keeping him above 200 pounds.
COMMUNITY LEADER
I am very sorry to hear that your fiancé is suffering so much with the complications of his cirrhosis.
Not knowing all the details of his case I can only talk in generalities.
First, I don’t understand why he is unable to control his hepatic encephalopathy. Usually HE is manageable until a person is very ill (MELD score 30+) and is close to needing a liver transplant. Of course when he will be able to get a transplant depends upon where he lives. You indicated you live in California. Here in California we have long wait lines and a person could need a MELD score between 30 -40 depending on his blood type.
Lactulose is considered the first-line therapy for HE. The usual oral dose of lactulose is about 15-30 ml given twice a day to induce 2-3 soft bowel movements daily. Abdominal bloating and a sweet taste in the mouth are the principal adverse effects associated with normal doses of lactulose. None of us likes taking, I took it for 6 years myself, it has a nasty taste, it but if we don't then the HE can not be managed and high ammonia and the resulting brain symptoms will occur which can be fatal if a person goes into a coma.
Lactulose is a liquid laxative that binds with ammonia and removes it from the body via stool. Lactulose draws fluid into the bowel (so both cause loose stools.) Generally speaking--- the goal while taking lactulose is to have 2 - 4 bowel movements per day.
NOTE: Keep in mind that too much diarrhea can cause dehydration.... and dehydration can also cause encephalopathy to become worse.
So the goal while taking lactulose (or kristalose) is to take enough to keep encephalopathy under control--- but not so much as to cause dehydration.
In my opinion he needs to be transferred from Kaiser to a nearby liver transplant center to help him manage his cirrhosis. With all of these life-threatening incidents of hepatic encephalopathy I would imagine he must to close to needing a transplant soon. If you find out his MELD score that would be helpful. I had my transplant at UCSF here in San Francisco where we also transplant Kaiser patients in northern California and a number of other areas. Kaiser has a contract with UCSF and they pay UCSF for all of the care we do for Kaiser’s patients needing liver transplants. Including pre and post transplant care at our center. For normal care issues, transplant medicines and all regular health services a person will still get all of these through Kaiser. I am not sure what transplant center they use in southern California but the must have at least one. If I were you I would get an appointment with his Kaiser doctor and advocate to have your fiancé transferred to your nearby liver transplant center. He should at minimum be put on their transplant waiting list so all of the paper work and evaluation is done and so when his MELD score is high enough he will get a liver. I have met dozens of Kaiser patients who eventually get to UCSF and get their transplants and have heard similar stories unfortunately. I don’t know Kaiser’s criteria for when they do the transfer. But I would push very hard to get him at least seen at his local transplant center and be evaluated.
As I said I don’t know exactly why he is having these issues with his HE. So unless he is not managing his HE with lactulose properly (2-4 bowel movement per day) he must have a MELD score near being eligible for transplant. About 30+. When the liver is close to failing some complications can become “refractory”, meaning even treatment can not control it very much.
So get an appointment with his doctor and insist that he be transferred to a liver transplant center so he can get expert help managing his symptoms. Kaiser only has gastroenterologist who are good at caring for someone with lesser liver disease but one someone is having life-threatening complications from ESLD they need the care of the team of liver specialist at a transplant center. No one doctor no matter how good and manage all of the issues a person with ESLD has. That is why transplant centers have a team of doctors caring for a patient.
If you are in northern California and you can get him seen at UCSF liver transplant I know everyone there and can help you and your fiancé get the support you need. You can send me a private message if you want more details.
I hope this helps.
Hector
Not knowing all the details of his case I can only talk in generalities.
First, I don’t understand why he is unable to control his hepatic encephalopathy. Usually HE is manageable until a person is very ill (MELD score 30+) and is close to needing a liver transplant. Of course when he will be able to get a transplant depends upon where he lives. You indicated you live in California. Here in California we have long wait lines and a person could need a MELD score between 30 -40 depending on his blood type.
Lactulose is considered the first-line therapy for HE. The usual oral dose of lactulose is about 15-30 ml given twice a day to induce 2-3 soft bowel movements daily. Abdominal bloating and a sweet taste in the mouth are the principal adverse effects associated with normal doses of lactulose. None of us likes taking, I took it for 6 years myself, it has a nasty taste, it but if we don't then the HE can not be managed and high ammonia and the resulting brain symptoms will occur which can be fatal if a person goes into a coma.
Lactulose is a liquid laxative that binds with ammonia and removes it from the body via stool. Lactulose draws fluid into the bowel (so both cause loose stools.) Generally speaking--- the goal while taking lactulose is to have 2 - 4 bowel movements per day.
NOTE: Keep in mind that too much diarrhea can cause dehydration.... and dehydration can also cause encephalopathy to become worse.
So the goal while taking lactulose (or kristalose) is to take enough to keep encephalopathy under control--- but not so much as to cause dehydration.
In my opinion he needs to be transferred from Kaiser to a nearby liver transplant center to help him manage his cirrhosis. With all of these life-threatening incidents of hepatic encephalopathy I would imagine he must to close to needing a transplant soon. If you find out his MELD score that would be helpful. I had my transplant at UCSF here in San Francisco where we also transplant Kaiser patients in northern California and a number of other areas. Kaiser has a contract with UCSF and they pay UCSF for all of the care we do for Kaiser’s patients needing liver transplants. Including pre and post transplant care at our center. For normal care issues, transplant medicines and all regular health services a person will still get all of these through Kaiser. I am not sure what transplant center they use in southern California but the must have at least one. If I were you I would get an appointment with his Kaiser doctor and advocate to have your fiancé transferred to your nearby liver transplant center. He should at minimum be put on their transplant waiting list so all of the paper work and evaluation is done and so when his MELD score is high enough he will get a liver. I have met dozens of Kaiser patients who eventually get to UCSF and get their transplants and have heard similar stories unfortunately. I don’t know Kaiser’s criteria for when they do the transfer. But I would push very hard to get him at least seen at his local transplant center and be evaluated.
As I said I don’t know exactly why he is having these issues with his HE. So unless he is not managing his HE with lactulose properly (2-4 bowel movement per day) he must have a MELD score near being eligible for transplant. About 30+. When the liver is close to failing some complications can become “refractory”, meaning even treatment can not control it very much.
So get an appointment with his doctor and insist that he be transferred to a liver transplant center so he can get expert help managing his symptoms. Kaiser only has gastroenterologist who are good at caring for someone with lesser liver disease but one someone is having life-threatening complications from ESLD they need the care of the team of liver specialist at a transplant center. No one doctor no matter how good and manage all of the issues a person with ESLD has. That is why transplant centers have a team of doctors caring for a patient.
If you are in northern California and you can get him seen at UCSF liver transplant I know everyone there and can help you and your fiancé get the support you need. You can send me a private message if you want more details.
I hope this helps.
Hector
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