I am caregiver for someone who has both cirrhosis and hepatic encephalopathy. This short video was VERY helpful to me in understanding what are some of the treatment options beyond lactulose and rifaximin. I discovered that interventional radiology is an option to reduce the shunting around the liver - (I didn’t know that at all) and I discovered that a living donor may accelerate the transplantation option - something that I suspected but was not sure of. Thank you SO much to the makers of this video! What a wonderful public service. I salute you.
Hi Caleb! Happy this video could be so helpful. We'd love to hear your story as a caregiver, if you'd be willing to share with us. You can do so directly here: liverfoundation.org/for-patients/share-your-story/
Thank you. That was a very informative Q&A session. I do not have HE, ...yet. But I've had a few concerning episodes of short-term memory problems that made me question if I had it or not. Unfortunately, as a stage 4 pancreatic and liver cancer patient, I do not qualify for a transplant, even after a living donor has been identified who would be willing to do this. At this stage in my life I'm under home hospice care but still ambulate well enough to take care of myself on my own, just slower. I was diagnosed in April of this year when I was basically lethargic, in severe pain and severely jaundiced. Everything I ate or drank, I vomited back up. My daughter took me to the ER and after a comprehensive round of labs, an MRI as well as a CT scan and liver biopsy, I was told I had a egg sized mass at the head of the pancreas that was blocking my bile duct. I also had malignant lesions on my liver. Lab tests showed extremely high levels of glucose. My daughter was told that if we had waited just one more hour, I probably would have slipped into a diabetic coma and died. Naturally, this came as a complete shock. They took me into surgery a few hours later to place a stent that opened up the blocked bile duct. I felt much better almost immediately. I was taught how to give myself insulin injections while I was still in the hospital. But dealing with the cancer was another thing entirely. I have a rare and very aggressive form of cancer called sqamous cell carcinoma, which is usually found in skin cancer, not on the pancreas or liver. Disease progression has been fairly rapid. Currently, my liver function is nearly non-existent. I was told there is nothing that can be done to eliminate the jaundice and I'm also suffering from edema and ascites as well as a persistent cough that produces white foamy mucous. I'm being treated with Lactolose and Lasix to keep it from getting worse. Lactolose seems to be the only recommended treatment for chronic jaundice, but it is like drinking karo syrup and it spikes my blood sugar like crazy. It doesn't make the jaundice go away but keeps it from getting worse.
My doctor has increased my lactose intake to 30ml 5 times a day . I have been on both meds for a while. I also have blood clots that are not dissolving. They talked to me today about TIPS
Very good video, good questions and answers. But I do get a little tired of hearing "add Xifaxan to the Lactulos. Have any of the doctors priced this drug? It is insanely high. Salix should be ashamed.
I live in Petersburg, I was told that there was only one liver Doctor in this area that I could go to and you are not that Doctor. I have never heard of you.
I had HE last year and this is really nice as I feel extremely lonely. I am 27 and I am now much better and functioning well but I’m also now dealing with my mental health as I don’t really understand what happened to me. It’s extremely scary and an awful thing to go through. I was luckily in hospital for 5 months and when my HE was at its worst. I have nearly no memories. I’m now on lacto and raflxanim ( wrong spelling aha ) I live in the uk and im the only person I know of who has been through this. So thank you for making me feel less lonely and answering some of my questions
I am also 27, I am also in the UK, and I have had three acute and severe episodes of HE in May. I have been in hospital since March and have just come out having had a liver transplant. I completely understand what you've been through (was also on those two meds prior to transplant). You are not alone and if you want to reach out, please feel free xx
My son is turning 34 next month, he has ESLD & has bouts of HE. He has ascites & has had four paracentesis treatments. Two in February, 2021 (when he was diagnosed) & twice in August 2021. Approx 16 Liters removed each of those months. He also had esophageal banding in February. He’s been sober since 1/8/21. Praying he can get a transplant. He’s not well. I’m worried he won’t last until then. Does anyone know, from that history, if it’s possible? I’m not happy with the pace of things where we live (Sarasota FL), so I’m getting him an appointment at Mayo. Would love some guidance.
I am not sure how it works outside of the UK, but here, that history would definitely be enough to get him on the transplant list. Some transplant centres require someone to be sober for 6 months before they will transplant, some don't, so maybe check that out first. Here, several episodes of HE can get you on the transplant waiting list even if your UKMELD (our version of MELD) isn't that high, and it sounds like your son has both (like I did). Good luck with everything xx
@@savvyshopperdeliversI'm in Texas. I went to MD Anderson Cancer Center in Houston/Sugarland but was told I did not qualify for surgery or acceptance into clinical trials. I pray that your son can get the transplant he needs very soon. My type and size of cancer and the fact that it has also spread to the liver disqualified me from both the whipple procedure (which would have removed the section of pancreas with the tumor) and a liver transplant.
I am caregiver for someone who has both cirrhosis and hepatic encephalopathy. This short video was VERY helpful to me in understanding what are some of the treatment options beyond lactulose and rifaximin. I discovered that interventional radiology is an option to reduce the shunting around the liver - (I didn’t know that at all) and I discovered that a living donor may accelerate the transplantation option - something that I suspected but was not sure of. Thank you SO much to the makers of this video! What a wonderful public service. I salute you.
Hi Caleb! Happy this video could be so helpful. We'd love to hear your story as a caregiver, if you'd be willing to share with us. You can do so directly here: liverfoundation.org/for-patients/share-your-story/
Thank you. That was a very informative Q&A session. I do not have HE, ...yet. But I've had a few concerning episodes of short-term memory problems that made me question if I had it or not.
Unfortunately, as a stage 4 pancreatic and liver cancer patient, I do not qualify for a transplant, even after a living donor has been identified who would be willing to do this.
At this stage in my life I'm under home hospice care but still ambulate well enough to take care of myself on my own, just slower.
I was diagnosed in April of this year when I was basically lethargic, in severe pain and severely jaundiced. Everything I ate or drank, I vomited back up. My daughter took me to the ER and after a comprehensive round of labs, an MRI as well as a CT scan and liver biopsy, I was told I had a egg sized mass at the head of the pancreas that was blocking my bile duct. I also had malignant lesions on my liver. Lab tests showed extremely high levels of glucose. My daughter was told that if we had waited just one more hour, I probably would have slipped into a diabetic coma and died.
Naturally, this came as a complete shock. They took me into surgery a few hours later to place a stent that opened up the blocked bile duct. I felt much better almost immediately. I was taught how to give myself insulin injections while I was still in the hospital. But dealing with the cancer was another thing entirely. I have a rare and very aggressive form of cancer called sqamous cell carcinoma, which is usually found in skin cancer, not on the pancreas or liver. Disease progression has been fairly rapid.
Currently, my liver function is nearly non-existent. I was told there is nothing that can be done to eliminate the jaundice and I'm also suffering from edema and ascites as well as a persistent cough that produces white foamy mucous.
I'm being treated with Lactolose and Lasix to keep it from getting worse. Lactolose seems to be the only recommended treatment for chronic jaundice, but it is like drinking karo syrup and it spikes my blood sugar like crazy. It doesn't make the jaundice go away but keeps it from getting worse.
My doctor has increased my lactose intake to 30ml 5 times a day . I have been on both meds for a while.
I also have blood clots that are not dissolving.
They talked to me today about TIPS
Very good video, good questions and answers. But I do get a little tired of hearing "add Xifaxan to the Lactulos. Have any of the doctors priced this drug? It is insanely high. Salix should be ashamed.
What about blue Gatorade?!?
I live in Petersburg, I was told that there was only one liver Doctor in this area that I could go to and you are not that Doctor. I have never heard of you.
All thanks to dr ekpoma for bringing back the lover of my life with his powerful spell…..thanks again Dr I really appreciate your help 🥰
I had HE last year and this is really nice as I feel extremely lonely. I am 27 and I am now much better and functioning well but I’m also now dealing with my mental health as I don’t really understand what happened to me. It’s extremely scary and an awful thing to go through. I was luckily in hospital for 5 months and when my HE was at its worst. I have nearly no memories. I’m now on lacto and raflxanim ( wrong spelling aha ) I live in the uk and im the only person I know of who has been through this. So thank you for making me feel less lonely and answering some of my questions
I am also 27, I am also in the UK, and I have had three acute and severe episodes of HE in May. I have been in hospital since March and have just come out having had a liver transplant. I completely understand what you've been through (was also on those two meds prior to transplant). You are not alone and if you want to reach out, please feel free xx
My son is turning 34 next month, he has ESLD & has bouts of HE. He has ascites & has had four paracentesis treatments. Two in February, 2021 (when he was diagnosed) & twice in August 2021. Approx 16 Liters removed each of those months. He also had esophageal banding in February. He’s been sober since 1/8/21. Praying he can get a transplant. He’s not well. I’m worried he won’t last until then. Does anyone know, from that history, if it’s possible? I’m not happy with the pace of things where we live (Sarasota FL), so I’m getting him an appointment at Mayo. Would love some guidance.
I am not sure how it works outside of the UK, but here, that history would definitely be enough to get him on the transplant list. Some transplant centres require someone to be sober for 6 months before they will transplant, some don't, so maybe check that out first. Here, several episodes of HE can get you on the transplant waiting list even if your UKMELD (our version of MELD) isn't that high, and it sounds like your son has both (like I did). Good luck with everything xx
@@savvyshopperdeliversI'm in Texas. I went to MD Anderson Cancer Center in Houston/Sugarland but was told I did not qualify for surgery or acceptance into clinical trials.
I pray that your son can get the transplant he needs very soon.
My type and size of cancer and the fact that it has also spread to the liver disqualified me from both the whipple procedure (which would have removed the section of pancreas with the tumor) and a liver transplant.