1. < Transplants

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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 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 here's the contact information for the patient library services in Rochester. http://www.mayo.edu/mayo-clinic-libraries
Mayo Clinic Libraries
200 First St. SW
Rochester, MN 55905
Phone: 507-284-2061
Email: library@mayo.edu

REPLY
amyintucson | @amyintucson | May 9, 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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Hi all - been having a rough last 2 months. I have a follow-up at Mayo/Phoenix on Friday. Been losing weight as I have not been very hungry plus the Lactulose causing diarrhea. i don't get to check here often - depends on my energy/concentration levels.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 9, 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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Hi Amy, thank you for taking the time to pop in. I'm so sorry to hear that life has been throwing extras challenges at you. I hope that they can make suggestions on Friday at your follow-up to help with your appetite and the diarrhea.

REPLY
JK | @contentandwell | May 10, 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 don’t recall your history here. Are you a transplant candidate? I know the trials of lactulose, hopefully you are a candidate and a transplant will happen soon. After my transplant, when I was still in some serious discomfort, my husband would cheer me up by saying “no more lactulose!”. I wish that for you, with a wonderful recovery.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 10, 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, It is good to hear from you. I understand why you have not been checking in, and I am sorry to hear that you are experiencing a rough time. Unfortunately that is what happens. I want to assure you that things will be better after you get your transplant. Our diseases and our journeys might all be different, and our waiting and our recoveries might all be different, but the hopes for the future and undiscovered strengths will carry you through.
I send my thoughts to you as you meet with your team on Friday.
Rosemary

REPLY
amyintucson | @amyintucson | May 10, 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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I am liver transplant candidate at Mayo/Phoenix.

REPLY
JK | @contentandwell | May 10, 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 Mayo is of course a great place to be. Do you know your MELD? I hope you won't have to wait too long for that magical call.
JK

REPLY
amyintucson | @amyintucson | May 10, 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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My meld is low - I get an update tomorrow - but there are other complications that are of concern to doing the surgery so we will see.

REPLY
JK | @contentandwell | May 10, 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 find the MELD quite confusing. Some people seem really, really sick but their MELD is in the teens and others seem to be doing better but their MELD is in the mid-20s at least. I guess if it's low you are not in jeopardy.
JK

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 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.

Jump to this post

@amyintucson Hello Amy. I used to live in Tucson for 20 yrs. I lived in the Eastside Pantano area, and mid-town Swan area. My cousin who now lives in Green Valley has Sarcoidosis also. I hope you get your transplant and that it goes smoothly. You are in the best hands that I know of, Mayo Clinic.

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