Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 Hi Bonnie: My husband had problems with high ammonia also before his transplant 2 years ago. The local hospital didn't seem to know what to do but when I insisted he be transported to the transplant center the drs there knew immediately that his ammonia level needed to come down. He was unable to swallow so they gave him lactulose enemas every two hours. I stayed and roomed in with him and since I knew him better than anyone I was the one who was able to let them know when there was improvement. We all worked together like a well oiled machine. He had his transplant at Hershey Medical Center in Hershey, PA. Hope this info helps. Jackie E. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, June 19, 2012 7:39 AM Subject: Re: lactulose experience  My husband takes lactlose 4 tablespoons 4 times a day 4 days a week and 3 tablespoons 3 times a day to help with high ammonia levels. 3 times a week due to dialysis. Even this much he still gets high ammonia levels. He was in the hospital 3 times less than 2 weeks for ammonia levels. It took 12 hrs before the ammonia levels started to drop and he knew what was going on. Does anyone else care for anyone with ammonia levels getting high and do you keep them at home or go to the hospital. All the Drs can do is give him lactulose but I worry about him going into a coma if I kept him home. levels have been 140, 206 ,225 Sincerely,  Bonnie Randklev McCormick Realty 2673 Steamship Drive Bullhead City, Az 86429 Office: 1- Fax: Cell: http://www.northforkatlaughlinranch.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 Way to go, tough guy! Just chug that stuff right down! I used to do the same thing with my husband's; measure it out in one of those medical cups. I totally understood the flexibility of the dosage since he is an insulin dependent diabetic and I have to adjust his insulin all the time. With taking care of him I could have a diploma on my wall! I'm so glad you're on xifaxin. It worked wonders for my husband too. He's a walking, talking miracle--2 years post liver transplant May 26th. I even wrote a book about our experience. If you'd like an autographed copy you can contact me on my personal e-mail at jckellermann@... God bless and have a good day. With Love, Jackie E. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, June 19, 2012 4:11 PM Subject: Re: lactulose experience  I take 30 mL, 4 times a day. I use a small medical measuring cup (sort of like a smaller shot glass) and thow it down like a couple of shots of whiskey. I used to hate it, then got to the point where i knew i needed it and not whine, and now I just take it and don't really think about it. It saves my life, so no complaints from me! I've been taking it for 2--2.5 years along with Xifaxin, and never have those episodes of shaking, loss of focus and memory, and confusion. It wasn't until I added the Xifaxin that I started to feel normal again. Lactulose serves as a laxative that attacks and removes E. Coli, abyproduct of protein intake, from your intestines. E. Coli stays in your system and creates ammonia, which in turn causes these episodes of confusion and mental fuzziness. occasionally i have to use an OTC laxative to keep the intestines clear. Good luck and God bless Kip kip via iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2012 Report Share Posted June 22, 2012 I WAS HOSPITALIZED IN APRIL FOR OTHER PROBLEMS BUT THEY BUT ON MY RECORD THAT MY AMONIA LEVEL WAS HIGH CAUSE FOR MY HOSP. STAY AND MY INSURANCE DENIED THE CLAIM BECAUSE THEY SAID HIGH AMONIA LEVELS ARE NORMAL FOR LIVER PATIENTS.SO I GEUSS THEY ARE NOT GOING TO DO ANYTHING IN THE FUTURE FOR MY HUGH AMONIA.GO FIGURE.  BEV, TX ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, June 19, 2012 9:12 AM Subject: Re: Re: lactulose experience  Hi Bonnie: My husband had problems with high ammonia also before his transplant 2 years ago. The local hospital didn't seem to know what to do but when I insisted he be transported to the transplant center the drs there knew immediately that his ammonia level needed to come down. He was unable to swallow so they gave him lactulose enemas every two hours. I stayed and roomed in with him and since I knew him better than anyone I was the one who was able to let them know when there was improvement. We all worked together like a well oiled machine. He had his transplant at Hershey Medical Center in Hershey, PA. Hope this info helps. Jackie E. ________________________________ From: Bonnie Randklev <mailto:bonnierandklev%40yahoo.com> To: " mailto:livercirrhosissupport%40yahoogroups.com " <mailto:livercirrhosissupport%40yahoogroups.com> Sent: Tuesday, June 19, 2012 7:39 AM Subject: Re: lactulose experience  My husband takes lactlose 4 tablespoons 4 times a day 4 days a week and 3 tablespoons 3 times a day to help with high ammonia levels. 3 times a week due to dialysis. Even this much he still gets high ammonia levels. He was in the hospital 3 times less than 2 weeks for ammonia levels. It took 12 hrs before the ammonia levels started to drop and he knew what was going on. Does anyone else care for anyone with ammonia levels getting high and do you keep them at home or go to the hospital. All the Drs can do is give him lactulose but I worry about him going into a coma if I kept him home. levels have been 140, 206 ,225 Sincerely,  Bonnie Randklev McCormick Realty 2673 Steamship Drive Bullhead City, Az 86429 Office: 1- Fax: Cell: http://www.northforkatlaughlinranch.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2012 Report Share Posted June 23, 2012 It really doesn't matter if a person has liver disease or not, if they start talking in gibberish they should go to the hospital. This condition can be caused by a whole bunch of things, none of them very good. There can be a difference in hyperammonemia (elevated ammonia in the blood stream) and portal systemic encephalopathy. (PSE) PSE can happen with normal ammonia readings and a patient can have sky high ammonia, and not show any symptoms of PSE.  This link is for a test that can show if a patient has impairment. I do not recommend anyone take this to thier doctor and wave it at them, (they will not take you seriously) It's not for diagnosing the condition, but it can be a useful tool to see if the lactulose is doing it's job. http://f1.grp.yahoofs.com/v1/IATmT_qFobDsQ7k4fWtKRcnANQJVzQb4ZCwbcVfD0y4lY5fLJW9\ JH3xoD2uxe0TCiId19W5UF6AYCAFnXHug/PSE_en.pdf Actual elevted ammonia in the blood is not good, regardless, and the medical staff will treat it. ( excess Ammonia can damage the already sick liver further).  Oriented x3 means that a person can say where they are, what time,day and date it is, and who they are. With my loved one, usually a bladder infection triggered severe episodes of PSE, and we would take her to the ER. Eventually we got to where we would just call 911.  If there is an underlying trigger, that must be investigated before any improvement can be expected. Not every hepatologist recommends lowering protien, (mine does not) so t is best to discuss it with the liver doctor. I stopped eating meat as a staple, and now have small amounts of it because I always have problems when I do eat it. Now my curly hair has gone completely straight. Has anyone else ever experienced this? Love, Bobby  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, June 19, 2012 8:39 AM Subject: Re: lactulose experience  My husband takes lactlose 4 tablespoons 4 times a day 4 days a week and 3 tablespoons 3 times a day to help with high ammonia levels. 3 times a week due to dialysis. Even this much he still gets high ammonia levels. He was in the hospital 3 times less than 2 weeks for ammonia levels. It took 12 hrs before the ammonia levels started to drop and he knew what was going on. Does anyone else care for anyone with ammonia levels getting high and do you keep them at home or go to the hospital. All the Drs can do is give him lactulose but I worry about him going into a coma if I kept him home. levels have been 140, 206 ,225 Sincerely,  Bonnie Randklev McCormick Realty 2673 Steamship Drive Bullhead City, Az 86429 Office: 1- Fax: Cell: http://www.northforkatlaughlinranch.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2012 Report Share Posted June 25, 2012 Bev Are you close to the Mexico border?? I'd say just pop over and graba couple of bottles and I'll bet they are a whole lot cheaper than even here in Canada. If all else fails, I can send you down some. It's definitely an OTC here. I just got a bottle today and it's $14.50. Gloria ________________________________  I WAS HOSPITALIZED IN APRIL FOR OTHER PROBLEMS BUT THEY BUT ON MY RECORD THAT MY AMONIA LEVEL WAS HIGH CAUSE FOR MY HOSP. STAY AND MY INSURANCE DENIED THE CLAIM BECAUSE THEY SAID HIGH AMONIA LEVELS ARE NORMAL FOR LIVER PATIENTS.SO I GEUSS THEY ARE NOT GOING TO DO ANYTHING IN THE FUTURE FOR MY HUGH AMONIA.GO FIGURE.  BEV, TX ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, June 19, 2012 9:12 AM Subject: Re: Re: lactulose experience  Hi Bonnie: My husband had problems with high ammonia also before his transplant 2 years ago. The local hospital didn't seem to know what to do but when I insisted he be transported to the transplant center the drs there knew immediately that his ammonia level needed to come down. He was unable to swallow so they gave him lactulose enemas every two hours. I stayed and roomed in with him and since I knew him better than anyone I was the one who was able to let them know when there was improvement. We all worked together like a well oiled machine. He had his transplant at Hershey Medical Center in Hershey, PA. Hope this info helps. Jackie E. ________________________________ From: Bonnie Randklev <mailto:bonnierandklev%40yahoo.com> To: " mailto:livercirrhosissupport%40yahoogroups.com " <mailto:livercirrhosissupport%40yahoogroups.com> Sent: Tuesday, June 19, 2012 7:39 AM Subject: Re: lactulose experience  My husband takes lactlose 4 tablespoons 4 times a day 4 days a week and 3 tablespoons 3 times a day to help with high ammonia levels. 3 times a week due to dialysis. Even this much he still gets high ammonia levels. He was in the hospital 3 times less than 2 weeks for ammonia levels. It took 12 hrs before the ammonia levels started to drop and he knew what was going on. Does anyone else care for anyone with ammonia levels getting high and do you keep them at home or go to the hospital. All the Drs can do is give him lactulose but I worry about him going into a coma if I kept him home. levels have been 140, 206 ,225 Sincerely,  Bonnie Randklev McCormick Realty 2673 Steamship Drive Bullhead City, Az 86429 Office: 1- Fax: Cell: http://www.northforkatlaughlinranch.com/ Quote Link to comment Share on other sites More sharing options...
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