Aa
35 years hepc/1a/end stage
Even though I work in the healthcare field, I was completely unaware of the HE that comes with end stage cirrhosis. Through other experiences what else am I in store for? Here's the background on the person I care for. Type 1a contracted around 79-80 via blood transfusion. Drinks no alcohol, long term obesity, diabetic for years then as of a few months ago....A1c levels are normal. No change in diet. Liver is 7cm, spleen is at least 16cm as of few months ago. Platelets hovering around 40-50. Now WBC are dropping. Doctor's won't up lasix, just started aldactone. The fluid is making the umbilical hernia worse. Sleeps on 5 pillows and c-pap, and still struggles to breathe. Nosebleeds have never stopped but the coughing up blood has because he can't clear anything in his throat/lungs.
As of the past few days he's been awake most of the time. Doctors said in 2012, it could be NASH as well. Tumor markers like AAP, ferritin level, AFP..etc..... Both parents died of various cancers. In a period of 2 weeks he has gone from regular breathing (regular rate rhythm and depth) to unequal and his apenic moments are longer. HIs CO2 levels in his blood are rising. His bilirubin is rising, albumin is falling, hemoglobin and hematocrit and RBC are all critically low and INR is prolonged. He has episodic moments of stumbling, breaking dishes (due to lack of grasp) slurred speech episodes....This is the worst case of suffering I have ever witnessed. I did find out he would qualify for hospice but he would have to agree to it, but no one can convince him that it means he has 6 months or less. The marked personality changes are only getting worse because this is not the person I've known and loved for 5 years. How much worse does it get before his liver finally gives out completely? Doctors said it's been cirrhosis since January 2010 and in 2010 he was only operating on 20% function then. How much more suffering am I going to witness?
As of the past few days he's been awake most of the time. Doctors said in 2012, it could be NASH as well. Tumor markers like AAP, ferritin level, AFP..etc..... Both parents died of various cancers. In a period of 2 weeks he has gone from regular breathing (regular rate rhythm and depth) to unequal and his apenic moments are longer. HIs CO2 levels in his blood are rising. His bilirubin is rising, albumin is falling, hemoglobin and hematocrit and RBC are all critically low and INR is prolonged. He has episodic moments of stumbling, breaking dishes (due to lack of grasp) slurred speech episodes....This is the worst case of suffering I have ever witnessed. I did find out he would qualify for hospice but he would have to agree to it, but no one can convince him that it means he has 6 months or less. The marked personality changes are only getting worse because this is not the person I've known and loved for 5 years. How much worse does it get before his liver finally gives out completely? Doctors said it's been cirrhosis since January 2010 and in 2010 he was only operating on 20% function then. How much more suffering am I going to witness?
What a horrible predicaments! However, if your patient is non-compliant, the doc's will not force the issue. If he is a hospice candidate then it's a matter of making him comfortable.
I worked in the transplant and organ recovery side of things, and if a patient has no social family support and is eating meat, then they will just ,et nature take its course. You can only give so much lassix before crashing the kidneys, so I'm thinking that that might be an issue. The lassix will also lower blood pressure which would flat out put him into an HE coma. I'm sorry, but if the patient does not have family willing to direct care, then it's managing death. I am really sorry you are going through this and so sorry your patient is at the end off treatment. Obesity does not help and is considered another compliance issue. Seriously, compliance is key to a proper and aggressive treatment. There is nothing more a doctor can do without a proper system (family medical directive).
I really am sorry, but de compensated liver disease with a non compliant patient is NOT a patient ANzy aggressive treatment will take place.
Dbz
I worked in the transplant and organ recovery side of things, and if a patient has no social family support and is eating meat, then they will just ,et nature take its course. You can only give so much lassix before crashing the kidneys, so I'm thinking that that might be an issue. The lassix will also lower blood pressure which would flat out put him into an HE coma. I'm sorry, but if the patient does not have family willing to direct care, then it's managing death. I am really sorry you are going through this and so sorry your patient is at the end off treatment. Obesity does not help and is considered another compliance issue. Seriously, compliance is key to a proper and aggressive treatment. There is nothing more a doctor can do without a proper system (family medical directive).
I really am sorry, but de compensated liver disease with a non compliant patient is NOT a patient ANzy aggressive treatment will take place.
Dbz
I am convinced (unfortunately based on my extensive experience dealing with my husband's HE episodes over these last four years) that your loved one's judgment on dealing with his illness is being impaired big time by symptoms of hepatic encephalopathy. It is beyond my understanding why his doctors are not addressing this very debilitating symptom of ESLD. I think the suggestion made by the prior two posters is a good one. Seek a consult with a qualified doctor at a VA hospital.
So very sorry for you both. You are in my thoughts and prayers.
Nan
So very sorry for you both. You are in my thoughts and prayers.
Nan
Peachy, I feel that fntn has really given you an excellent bit of advice: is there any way that you can get him in to meet with a VA doctor? They generally DO have experience with these difficult cases -
Maybe if you had a consult with a close by VA hospital doctor or team yourself, that doctor could in turn call your husband and give some "military" flavored advise on what to do and why just "sucking it up" makes no sense. Not sure but they might know how to handle difficult cases like these.
I am his health care proxy, but he's put in there he does not want me to be allowed to override any thing he has specifically stated no to. But I can address issues that were not directly addressed and can access the medical records. He won't accept hospice because he's an old school Marine force recon. They have superman complexes.
Not understanding why he won't accept hospice care. I think the HE is not allowing him to make the right decisions. Are you his health proxy? If so, you may want to do what you think is best for the both of you, but especially for him. If not, I don't think there is anything more you can do other than take care of yourself by getting some other help in ( relative or friend) and taking some time away to de-stress..
Nan
Nan
Thank you so much. He was a lifelong medical provider too so we have tons of friends in various medical capacities. I think he has given up. But he won't accept hospice care.....which means he suffers unneeded. Its gotten to a point where I'm asking God, why he's still allowing him to suffer. And as much as I want him here with me, seeing him suffer is unbearable. The fluid accumulation is so bad now, his eyes also looked swollen shut. And it's everywhere.
He needs to see a GOOD doctor that will give him hope that he can survive this. But he has to want to live if he has any chance at all. It sounds like he has already given up. So very sad. You can't make him do what he doesn't want to do. Make sure you have some support to get through this yourself.
We're here.
Nan
We're here.
Nan
PeachyRoses - You really do need to get him to go in for the paracentesis and I know you've probably tried to drag him in before. It's not that bad of a procedure and has very little to no pain. I've been in several times and I absolutely hate needles. Pulled 13 liters out of me during a couple of days last time and I dropped an enormous amount of weight along with reducing the internal pressure and pain. Felt wonderful afterwards and eating was enjoyable again.
This is why I believe he is not being treated for HE. There are very few hepatologist (even fewer that are worth anything) The closest transplant center deemed he was not a candidate for transplant in 2012. That's when he went from compensated to decompensated. We live in Alabama. The only thing the liver doctor said was I'll write you a script for Solvadi if your insurance will pay for it and see you in 3 months.
Weight- yes a large part is due to the ascites. Yesterday however, it is visible from his toes to his eyebrows. The fluid was mainly in his abdomen and feet. He was more jaundice than I have ever seen too. He refuses to have a paracentesis. Even though it would probably take off 40 pounds. The doctors refuse to increase the Lasix (with no given reason, at least to me) He has 4 hernias, and I believe the ascites is going to cause the umblical hernia to rupture the prior bleed he had in his GI tract. And I don't know if I mentioned this but his WBC and RBC count is hovering above 3. So he has virtually no blood either.
Weight- yes a large part is due to the ascites. Yesterday however, it is visible from his toes to his eyebrows. The fluid was mainly in his abdomen and feet. He was more jaundice than I have ever seen too. He refuses to have a paracentesis. Even though it would probably take off 40 pounds. The doctors refuse to increase the Lasix (with no given reason, at least to me) He has 4 hernias, and I believe the ascites is going to cause the umblical hernia to rupture the prior bleed he had in his GI tract. And I don't know if I mentioned this but his WBC and RBC count is hovering above 3. So he has virtually no blood either.
Hi I am glad to see that you are getting some responses. Nan is a wonderful person, very helpful..
I see that Hector answered you on the HCV thread.
He is very knowledgeable having gone through so much. More than anyone I know.
I just wanted to come back to check on your messages to ensure you had gotten some answers
Take Care
Dee
I see that Hector answered you on the HCV thread.
He is very knowledgeable having gone through so much. More than anyone I know.
I just wanted to come back to check on your messages to ensure you had gotten some answers
Take Care
Dee
Continued (sorry)
At one point pre transplant because of all the excessive edema he had. They successfully cleared him of the excess fluid in the hospital and he lost 30 lbs of fluid.
I'm not really understanding why his HE is not being treated. Perhaps you can share some more information.
Nan
At one point pre transplant because of all the excessive edema he had. They successfully cleared him of the excess fluid in the hospital and he lost 30 lbs of fluid.
I'm not really understanding why his HE is not being treated. Perhaps you can share some more information.
Nan
I did read your post where you say the doctors won't give him lactulose. Can you explain the reason why?
Also when you say he is obese, is it from excessive fluid in his body? My husband reached 260 lbs at
Also when you say he is obese, is it from excessive fluid in his body? My husband reached 260 lbs at
I am very sorry to hear of your loved ones' condition. I know very well what he and you are experiencing. I have been my husband's caregiver since December 2010 when he too was diagnosed with ESLD as a result of Hep C he got from a blood transfusion in 1979. (You may read my profile for a recap of what he has been through if you like).
Your husband is experiencing all of the symptoms of decompensated cirrhosis (ESLD). From your description, he has ascites (fluid in the belly), varices which are bleeding, portal hypertension, and hepatic encephalopathy. These serious complications are all life threatening as you know. Is he being seen by a hepatologist at a liver transplant center?
A liver transplant is his only chance for survival. These doctors are the best in the field and will evaluate him for transplant. If he does not meet the requirements for transplant, they will treat his symptoms and help keep him as stable as they can given his medical condition.
He should be taking lactulose and Rifaximin (Xifaxin) to keep his HE under control. He should not be eating any red meat as it will make things worse. Fruits and vegetables, chicken and fish are pretty much the recommended diet. Five smaller meals are preferred to three big meals.
I find the HE is the most difficult symptom to deal with so if you can help him get that under control it will help both of you to deal with the immense stress.
Please know that we know what you are dealing with and will be here for you. Keep coming back and ask your questions.
Big hug,
Nan
Your husband is experiencing all of the symptoms of decompensated cirrhosis (ESLD). From your description, he has ascites (fluid in the belly), varices which are bleeding, portal hypertension, and hepatic encephalopathy. These serious complications are all life threatening as you know. Is he being seen by a hepatologist at a liver transplant center?
A liver transplant is his only chance for survival. These doctors are the best in the field and will evaluate him for transplant. If he does not meet the requirements for transplant, they will treat his symptoms and help keep him as stable as they can given his medical condition.
He should be taking lactulose and Rifaximin (Xifaxin) to keep his HE under control. He should not be eating any red meat as it will make things worse. Fruits and vegetables, chicken and fish are pretty much the recommended diet. Five smaller meals are preferred to three big meals.
I find the HE is the most difficult symptom to deal with so if you can help him get that under control it will help both of you to deal with the immense stress.
Please know that we know what you are dealing with and will be here for you. Keep coming back and ask your questions.
Big hug,
Nan
Oh...I see. The lactulose and the antibiotic (which I can't remember except it starts with an R) help to reduce the amount of ammonia and help the person to think better.
I am really sorry. I know this has to be so hard on you. You are very kind to try to find help.
I have a friend with this and he doesn't want to take the lactulose due to the diarrhea. As the dose is titrated and the body adjusts. the diarrhea can be reduced. I have also read that probiotics can help with ammonia, I don't have the study related to it but I will try to find it and come back.
I am sure others will be a long soon to help. Take care, Dee
I am really sorry. I know this has to be so hard on you. You are very kind to try to find help.
I have a friend with this and he doesn't want to take the lactulose due to the diarrhea. As the dose is titrated and the body adjusts. the diarrhea can be reduced. I have also read that probiotics can help with ammonia, I don't have the study related to it but I will try to find it and come back.
I am sure others will be a long soon to help. Take care, Dee
No the doctors won't give lactulose and he said he wasn't going to ask for it either. He refuses to get his ammonia level checked. If he is given any anxiety or pain medication it turns this once mild mannered man into a hot headed mean spirited lunatic & it takes hours (sometimes days) for him to get clear headed and rational again.
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