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Lactulose question

Posted by jodeej @jodeej, Apr 8, 2018

I’ve seen that several of you have taken lactalose (not sure how you spell it) while awaiting transplant. My husband is having some HE symptoms, but wants to work as long as possible. Is it possible to take lactalose and still work? I don’t want him to take it, go to work, and then have bathroom issues.

Interested in more discussions like this? Go to the Transplants group.

jodeej | @jodeej | Apr 11, 2018
In reply to @rosemarya "@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara..." + (show)
@rosemarya

@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara Woodward Lips Patient Education Center. The center is located in the Siebens Building, Subway Level, near the Siebens elevators and the Mayo Clinic Store and the Patient and Visitor Cafeteria. The library receptionist can help you locate hard copy materials. And there is a research librarian who might be able to help you locate information or resources.
https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota
Rosemary

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@rosemarya good call! Hopefully I'll have time to get there before we leave tomorrow.
Thanks for the idea! JoDee

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JK | @contentandwell | Apr 11, 2018
In reply to @jodeej "Well, we talked to the doctor and Tim's ammonia levels are actually in the normal range...." + (show)
@jodeej

Well, we talked to the doctor and Tim's ammonia levels are actually in the normal range. That means his "brain fog" isn't from that. I know this has been on my radar for a few years now and I'm beginning to think that it was caused by the antivirals he took to get rid of his hep c. Does anyone know anything about this or where to get more information?
Thank you,
JoDee

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@jodeej JoDee, when I was having HE my PCP wanted to do regular tests to check my ammonia level but the hepatologist said it is not a reliable indicator of whether or not a person will have an HE episode or not, that some people whose ammonia levels are high seem to be able to function fairly normally and some people whose level is not high do have symptoms, possibly like the brain fog you mention. Frankly, in my case, I think it would have been an indicator but it can change so rapidly that getting it tested it weekly is not really a reliable indicator if you may or not have an episode. Your ammonia level could be fine one day but two days later go high.
JK

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amyintucson | @amyintucson | Apr 17, 2018

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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15 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 21, 2018
In reply to @amyintucson "I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance -..." + (show)
@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@amyintucson, I want to extend a welcome to Mayo Connect. I want you to know that you are welcome to participate in any of our Connect – GROUPS, PAGES, EVENTS, CHAMPIONS – that you will see across the top of this page.

There is an event happening on Tuesday, 24th. You may or may not be interested in. It is about organ procurement. In all honesty, I could not have watched this / faced this content 9 years ago when I was waiting, and newly transplanted. However, I want to share the link in case you or husband are interested.
https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/
We are here any time if have questions, or simply want to talk.
Are you waiting for a transplant?

Rosemary

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amyintucson | @amyintucson | Apr 21, 2018
In reply to @amyintucson "I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance -..." + (show)
@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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Hello everyone. I have been lurking for a few months now and am on the liver transplant list at Mayo-Phoenix since 2/2017. I was diagnosed with sarcoidosis – concentrated in the liver – in 8/2008. We have been monitoring and dealing with symptoms since then I have had several procedures to band esophageal varicies. My liver started as enlarged with the sarcoid granulomas and advanced to cirrhosis. Waiting is difficult but I know there are many others who are sicker than I am and my time will come.

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JK | @contentandwell | Apr 21, 2018
In reply to @amyintucson "I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance -..." + (show)
@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@anyintuscon. Welcome to the forum. I have found it to be very informative and helpful, and supportive. I had a liver transplant in September 2016 and have been doing great. The cause of my needing it was non-alcoholic cirrhosis. I was put on the list as a candidate in June or July of 2015. When I was transplanted my MELD was 28 which was lower than typical in the northeast. I was fortunate, maybe because I am blood type B, which can help. All of the Mayos have wonderful reputations so you are in great hands.
JK

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kltchrmn | @kltchrmn | Apr 22, 2018

I take Lactulose and Xifaxan. I’m also on diuretics. For me, the Lactulose makes it easier to go. Before I started Lactulose, I had really bad constipation.

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5 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 22, 2018
In reply to @rosemarya "@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara..." + (show)
@rosemarya

@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara Woodward Lips Patient Education Center. The center is located in the Siebens Building, Subway Level, near the Siebens elevators and the Mayo Clinic Store and the Patient and Visitor Cafeteria. The library receptionist can help you locate hard copy materials. And there is a research librarian who might be able to help you locate information or resources.
https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota
Rosemary

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@jodeej Were you able to get to the Patient Education Center? Any information?
I hope you were ahead of the weather!
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 22, 2018
In reply to @kltchrmn "I take Lactulose and Xifaxan. I’m also on diuretics. For me, the Lactulose makes it easier..." + (show)
@kltchrmn

I take Lactulose and Xifaxan. I’m also on diuretics. For me, the Lactulose makes it easier to go. Before I started Lactulose, I had really bad constipation.

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@kltchrmn, I just now saw your message pop up, and I want to say, "Welcome" to Mayo Clinic Connect. We are happy that you have joined this conversation and have shared from your own experience.

I want to invite you to look at, read, and join into any of our discussions in any of the GROUPS-PAGES- EVENTS-CHAMPIONS listed on top of this page. And in the grey box, bottom left of page you will find a link "Get Started on Connect" if you want to learn more about how to use Connect. Of course, we are here to help you with that, too!

Are you a transplant patient?
Rosemary

REPLY
jodeej | @jodeej | Apr 22, 2018
In reply to @rosemarya "@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara..." + (show)
@rosemarya

@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara Woodward Lips Patient Education Center. The center is located in the Siebens Building, Subway Level, near the Siebens elevators and the Mayo Clinic Store and the Patient and Visitor Cafeteria. The library receptionist can help you locate hard copy materials. And there is a research librarian who might be able to help you locate information or resources.
https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota
Rosemary

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@rosemarya we missed the weather, thankfully! I did not make it to the patient education center. With Tim's ammonia levels being normal I didn't try to get there. One of the hospitals here has a resource center so I may contact them to see what they can get me for information.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 22, 2018
In reply to @amyintucson "I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance -..." + (show)
@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@amyintucson, I love that term, "lurking" in this context! That is what I did before I joined. I was looking for someone 'like me' after my transplant in 2009. I have a liver/kidney transplant. (Primary Sclerosing Cholangitis -PSC) I transplanted at Mayo Rochester. We have patients from many areas, and I am constantly learning and being inspired by all of our members.

Waiting is difficult. "Day by day" and "One step at a time". All of our members are part of this journey and we are sharing and encouraging each other as we move along. We look forward to walking with you.
Rosemary

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kltchrmn | @kltchrmn | Apr 22, 2018
In reply to @kltchrmn "I take Lactulose and Xifaxan. I’m also on diuretics. For me, the Lactulose makes it easier..." + (show)
@kltchrmn

I take Lactulose and Xifaxan. I’m also on diuretics. For me, the Lactulose makes it easier to go. Before I started Lactulose, I had really bad constipation.

Jump to this post

Pre-transplant at Mayo Rochester.

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