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Hepatic Encephalopathy
For those who are dealing with this complication of cirrhosis whether as a patient or caregiver, here is a link to an upcoming webinar:
http://go.liverfoundation.org/site/MessageViewer?dlv_id=42461&em_id=29641.0
http://go.liverfoundation.org/site/MessageViewer?dlv_id=42461&em_id=29641.0
I thought I would update you on my husband's condition with respect to his episodes of hepatic encephalopathy.
He is now on week 17 of 24 weeks of his Hepatitis C treatment (Sovaldi + Ribavirin). The ribavirin continues to lower his hgb significantly. Since my previous posts, he no longer takes procrit shots, no Xifaxin, and no Centrum multivitamins which were all interfering with these meds and causing his episodes of encephalopathy. Last week his hemglobin dropped to 7.1 so he was given 2 units of "real" blood instead of procrit for the first time since starting treatment. We didn't know what to expect but what happened is he had a great weekend with no HE for the first time since starting treatment.
So my advice to everyone is pay very good attention to your body and its reaction to medicines and even multivitamins. My husband went through a very hard time for four months but for the first time we are hopeful that he will get through the remaining 7 weeks without this very difficult side effect.
Nan
He is now on week 17 of 24 weeks of his Hepatitis C treatment (Sovaldi + Ribavirin). The ribavirin continues to lower his hgb significantly. Since my previous posts, he no longer takes procrit shots, no Xifaxin, and no Centrum multivitamins which were all interfering with these meds and causing his episodes of encephalopathy. Last week his hemglobin dropped to 7.1 so he was given 2 units of "real" blood instead of procrit for the first time since starting treatment. We didn't know what to expect but what happened is he had a great weekend with no HE for the first time since starting treatment.
So my advice to everyone is pay very good attention to your body and its reaction to medicines and even multivitamins. My husband went through a very hard time for four months but for the first time we are hopeful that he will get through the remaining 7 weeks without this very difficult side effect.
Nan
I am very sorry that your mother-in-law is going through this. I find it the worst symptom of advanced cirrhosis to have to deal with.
Here is a link to the archived webinar "Diagnosing and Treating HE"
http://he123.liverfoundation.org/resources/webinars/diagnosing-and-treating-he/
I found it very informative and helpful.
You are all in my thoughts and prayers.
Nan
Here is a link to the archived webinar "Diagnosing and Treating HE"
http://he123.liverfoundation.org/resources/webinars/diagnosing-and-treating-he/
I found it very informative and helpful.
You are all in my thoughts and prayers.
Nan
I am anxious to see this tonight - I am at work right now but just ran across this. I am trying to play the informed one during my mother in laws hospital stay. So many issues so many times feeling helpless........the doctors seem to be maybe not clueless but I don't know if they are floored by this or if it really is so rare they are not sure what they are battling. I so agree with one of the comments about being the caregiver and seemingly no one wants to listen when you mention all of the swelling today vs last night or yes she is talking some but what she is saying makes no sense or is not true or she is not eating, yes you are putting a tray before her but she can't even sit up or hold anything, what happens when we are not there.......anyway I hope this may give me some insight. I have researched and read endlessly losing enormous amounts of time pouring over pictures of her charts I had to sneak pouring over test results going over mental status fighting a battle with the hospital wanting to put her in a nursing home because its all in her head...................so many battles you all fight day in and day out. I wish she would just be awake for us to enjoy our time with her..........thank you for your link I am hoping to be more enlightened and informed after seeing it.
Hello there! Thank you so much for sharing your story with the rest of us.
It really shows how strong people can be stronger than they ever thought they could be.
I pray that this tx is the tx that works for your husband.
When I treated I developed anxiety it was very bad. I felt misunderstood or I misunderstood others. I am not sure how my husband got through it with me. I was so anxious I had panic attacks. When you read about cognitive problems at the beginning of tx I thought that I could tell myself that is all it is. When you are in the middle of the episode you can't just tell yourself that it will be ok.
Do you have a support system? Someone you can vent to? Go out for coffee or even a walk? You need a break too.
I really admire you for what you are doing. You are a wonderful wife and friend.
Bless you
Dee
It really shows how strong people can be stronger than they ever thought they could be.
I pray that this tx is the tx that works for your husband.
When I treated I developed anxiety it was very bad. I felt misunderstood or I misunderstood others. I am not sure how my husband got through it with me. I was so anxious I had panic attacks. When you read about cognitive problems at the beginning of tx I thought that I could tell myself that is all it is. When you are in the middle of the episode you can't just tell yourself that it will be ok.
Do you have a support system? Someone you can vent to? Go out for coffee or even a walk? You need a break too.
I really admire you for what you are doing. You are a wonderful wife and friend.
Bless you
Dee
Just a reminder that the webinar on Hepatic Encephalopathy will be taking place this Wednesday, April 23rd.
http://go.liverfoundation.org/site/MessageViewer?dlv_id=42461&em_id=29641.0
http://go.liverfoundation.org/site/MessageViewer?dlv_id=42461&em_id=29641.0
I didn't realize he is currently in the hospital. Definitely sending prayers and well wishes for your hubby.
Thank you for your support and prayers. It means so much. He is stil in the hospital getting IV antibiotics as something grew in one of the culture bottles. They think it may just be a contaminant as the other bottle grew nothing.
He should be out of the hospital tomorrow. They are holding the procrit for now. He needs at least a couple of weeks of peace.
Nan
He should be out of the hospital tomorrow. They are holding the procrit for now. He needs at least a couple of weeks of peace.
Nan
Hi Nan,
Sorry to hear that your husband continues to suffer so much with the HE episodes. It sounds like the Sovaldi/Riba treatment has been very tough on him so far, so I am praying for a good outcome (SVR) for him. He deserves it.
Hang in there.
Advocate1955
Sorry to hear that your husband continues to suffer so much with the HE episodes. It sounds like the Sovaldi/Riba treatment has been very tough on him so far, so I am praying for a good outcome (SVR) for him. He deserves it.
Hang in there.
Advocate1955
Thank you so much, Faith. I really appreciate your very kind and supportive words. They mean so much coming from a fellow caregiver.
I have been trying so hard to be positive in order to keep his hope and fighting spirit alive so that he will one day get through this and have some quality of life again. But really how much can a person take before they just give up trying? To see him doing so well when he got out of the hospital, only to return a week later was just so hard.
The good news is the doctor has agree to hold the procrit this week!
(You think...?) Finally we can see how he does without it.
Trust me, I don't want to be proven right for me - I want it for him!
My fingers are crossed that he will get through a couple of weeks without an episode of HE and that his hgb remains at an acceptable level for treatment to continue.
Positive thoughts and prayers will be much appreciated every one!
Nan
I have been trying so hard to be positive in order to keep his hope and fighting spirit alive so that he will one day get through this and have some quality of life again. But really how much can a person take before they just give up trying? To see him doing so well when he got out of the hospital, only to return a week later was just so hard.
The good news is the doctor has agree to hold the procrit this week!
(You think...?) Finally we can see how he does without it.
Trust me, I don't want to be proven right for me - I want it for him!
My fingers are crossed that he will get through a couple of weeks without an episode of HE and that his hgb remains at an acceptable level for treatment to continue.
Positive thoughts and prayers will be much appreciated every one!
Nan
Dear Nan,
I am sending you my prayers for continued strength to get through this with your husband. I am reading this latest event and can't believe all that continues to happen. What you said speaks volumes.
-------------------------
"What I am finding out is, every person is different. I think doctors need to keep an open mind on how a patient will react to treatment, and listen to the caregivers"
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It is because of caretakers like you, the advocates, loved ones get the attention from the medical community because, in my opinion the medical community is not proactive in some situations. It has definitely been an eye opener to me with my husbands situation as well.
Know that you are amazing. I am honored to know you via this forum. I learn from you and you give me strength. There are days I just want to crawl back to bed, but I know someone is depending on me and this too shall pass.
Faith
I am sending you my prayers for continued strength to get through this with your husband. I am reading this latest event and can't believe all that continues to happen. What you said speaks volumes.
-------------------------
"What I am finding out is, every person is different. I think doctors need to keep an open mind on how a patient will react to treatment, and listen to the caregivers"
--------
It is because of caretakers like you, the advocates, loved ones get the attention from the medical community because, in my opinion the medical community is not proactive in some situations. It has definitely been an eye opener to me with my husbands situation as well.
Know that you are amazing. I am honored to know you via this forum. I learn from you and you give me strength. There are days I just want to crawl back to bed, but I know someone is depending on me and this too shall pass.
Faith
Thank you, Randy. I have posted this before but I want to say again that this forum and all of you are a God-send to me. I don't know how I would make it through this otherwise. It's important to be able to talk about what you're experiencing with those who will understand. It also helps to be able to share what you have learned and help others.
My very best to you and your wife.
Nan
My very best to you and your wife.
Nan
COMMUNITY LEADER
Nan, you are incredibly thorough and well informed. I wish there was something I could add other than my best wishes. Your husband is a lucky man to have you on his side looking out for him.
Also with such great input from Advocate and Howie I believe you are well prepared.
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"What I am finding out is, every person is different. I think doctors need to keep an open mind on how a patient will react to treatment, and listen to the caregivers"
I very much agree, my wife stays involved with my medical treatment and is present for every appointment. So many times she has helped me make my point (in the event I am struggling to do so) as well as express her own view establishing good communication with my doctors, from there we all decide what's best for me.
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I wish you both the very best, remember to take good care of you too!
Randy
Also with such great input from Advocate and Howie I believe you are well prepared.
-------------------------
"What I am finding out is, every person is different. I think doctors need to keep an open mind on how a patient will react to treatment, and listen to the caregivers"
I very much agree, my wife stays involved with my medical treatment and is present for every appointment. So many times she has helped me make my point (in the event I am struggling to do so) as well as express her own view establishing good communication with my doctors, from there we all decide what's best for me.
--------------------------
I wish you both the very best, remember to take good care of you too!
Randy
Hi Hector
These last seven weeks he has been on the Sovali /Ribavirin treatment, I have been giving him a procrit shot once a week to raise his hgb. Within 36 hrs of doing so, every week an episode of HE begins. Each week they do labwork and I saw a pattern emerging. The higher the hgb reached each week, the longer and worse the episodes. So I started looking into what could be causing this.
Turns out that Ribavirin causes hemolysis in 64% of those reporting side effects according to a listing given to me by the specialty pharmacy. Hemolysis is the early breakage of the red blood cell’s (RBC’s) membrane. This can cause an increase in the ammonia levels which as you know will also precipitate an episode of HE.
The worse the episode of HE the more debilitating it has been for him and finally after 5 weeks of it, his body just gave out two weeks ago. He ended up in the hospital for a week with IV fluids and IV antibiotics. When he was discharged, he was great. The best he had been in a long while. Three days later I gave him the Procrit shot (very reluctantly as his hgb was very close to 10 already), and 36 hrs later the symptoms of HE began again. He had no fever for the first 2 and 1/2 days and his HE was resolving and then suddenly he got a fever of 102, and yes, his HE worsened. I heard him fall in the bathroom and he is now in the hospital not only for investigation of the fever (which is now gone without any antibiotics) but to find out if he has a serious knee injury as a result of the fall.
What I am finding out is, every person is different. I think doctors need to keep an open mind on how a patient will react to treatment, and listen to the caregivers. We are the ones that are with the patient 24/7. We know and we see everything. This information can be invaluable to them in helping their patient to make it through treatment successfully.
I am so tired and just plain weary but I will do whatever it takes to help him through this.
Nan
These last seven weeks he has been on the Sovali /Ribavirin treatment, I have been giving him a procrit shot once a week to raise his hgb. Within 36 hrs of doing so, every week an episode of HE begins. Each week they do labwork and I saw a pattern emerging. The higher the hgb reached each week, the longer and worse the episodes. So I started looking into what could be causing this.
Turns out that Ribavirin causes hemolysis in 64% of those reporting side effects according to a listing given to me by the specialty pharmacy. Hemolysis is the early breakage of the red blood cell’s (RBC’s) membrane. This can cause an increase in the ammonia levels which as you know will also precipitate an episode of HE.
The worse the episode of HE the more debilitating it has been for him and finally after 5 weeks of it, his body just gave out two weeks ago. He ended up in the hospital for a week with IV fluids and IV antibiotics. When he was discharged, he was great. The best he had been in a long while. Three days later I gave him the Procrit shot (very reluctantly as his hgb was very close to 10 already), and 36 hrs later the symptoms of HE began again. He had no fever for the first 2 and 1/2 days and his HE was resolving and then suddenly he got a fever of 102, and yes, his HE worsened. I heard him fall in the bathroom and he is now in the hospital not only for investigation of the fever (which is now gone without any antibiotics) but to find out if he has a serious knee injury as a result of the fall.
What I am finding out is, every person is different. I think doctors need to keep an open mind on how a patient will react to treatment, and listen to the caregivers. We are the ones that are with the patient 24/7. We know and we see everything. This information can be invaluable to them in helping their patient to make it through treatment successfully.
I am so tired and just plain weary but I will do whatever it takes to help him through this.
Nan
COMMUNITY LEADER
Nan,
I am very sorry to hear your husband's HE is so problematic. With a fever he probably has an infection which is causing the HE to flare. I would recommend calling the hospital so they know he has a fever and his HE is getting worse. He may need IV antibiotics to fight the infection then his HE should stabilize.
Hepatic encephalopathy may be triggered by:
Dehydration
Constipation
Eating too much protein
Infections
Electrolyte abnormalities (especially a decrease in potassium) from vomiting, or from treatments such as paracentesis or taking diuretics
Bleeding from the intestines, stomach, or esophagus (Variceal bleeding)
Kidney problems
Low oxygen levels in the body
Shunt placement or complications (TIPS (Transjugular intrahepatic portosystemic shunt) )
Surgery
Use of medications that suppress the central nervous system (such as barbiturates or benzodiazepine tranquilizers)
My best to you and your husband always! I am hoping for better times ahead.
Hector
I am very sorry to hear your husband's HE is so problematic. With a fever he probably has an infection which is causing the HE to flare. I would recommend calling the hospital so they know he has a fever and his HE is getting worse. He may need IV antibiotics to fight the infection then his HE should stabilize.
Hepatic encephalopathy may be triggered by:
Dehydration
Constipation
Eating too much protein
Infections
Electrolyte abnormalities (especially a decrease in potassium) from vomiting, or from treatments such as paracentesis or taking diuretics
Bleeding from the intestines, stomach, or esophagus (Variceal bleeding)
Kidney problems
Low oxygen levels in the body
Shunt placement or complications (TIPS (Transjugular intrahepatic portosystemic shunt) )
Surgery
Use of medications that suppress the central nervous system (such as barbiturates or benzodiazepine tranquilizers)
My best to you and your husband always! I am hoping for better times ahead.
Hector
Thanks for the link. I will take a look later today or tomorrow. Waiting for the visiting nurse to arrive. My husband has not been well since Sunday with another episode of encephalopathy. I gave him the Procrit shot on Friday very reluctantly. Sure enough symptoms started on Sunday. He has a fever today so I may end up taking him back to the hospital. Didn't expect to have to so soon again.
It just never ends...
Nan
It just never ends...
Nan
I wanted to share this thread with you Nan, in case you haven't read it. Allison1965, whose husband Gary was post transplant with a relapse in Hep C, decompensated and developed HE with his new liver. This is a thread she started and in it there is a link to a documentary about HE. It's hard to watch, but valuable information.
http://www.medhelp.org/posts/Hepatitis-C/A--hepatic-encephalopathy-documentary/show/1840398#post_8504000
Advocate1955
http://www.medhelp.org/posts/Hepatitis-C/A--hepatic-encephalopathy-documentary/show/1840398#post_8504000
Advocate1955
Hi Nan
So sad to hear of you and your husbands continued struggles. I hope the treatment works for him and he is able to at least eradicate Hep C and lighten the load on his liver
Best wishes
Lynn
So sad to hear of you and your husbands continued struggles. I hope the treatment works for him and he is able to at least eradicate Hep C and lighten the load on his liver
Best wishes
Lynn
You're very welcome. Unfortunately, my husband continues to have these episodes of HE weekly since starting his Hep C treatment. He is now recovering from the latest one.
I am looking forward to this webinar. I find HE to be the hardest complication of cirrhosis to deal with (for him and for me). I hope others will see the post
and sign up for the webinar.
Nan
I am looking forward to this webinar. I find HE to be the hardest complication of cirrhosis to deal with (for him and for me). I hope others will see the post
and sign up for the webinar.
Nan
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