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Rosemary, Volunteer Mentor (@rosemarya)

This and That and Talk - My Transplant

Transplants | Last Active: Jul 27 9:34pm | Replies (1646)

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@beckyy39

Diabetes and fatty liver – I have been an auditor for years and am still waiting to hear from SS disability so finances have been a worry. I live 30 miles from the nearest hospital and my doctors and have had 5 hospitalizations since December 1. Because I had 2 severe inpatient visits due to hepatic encephalitis with amnesia my doctor said I can't drive originally but now that I'm on Lactulose and Spiractalone, he is allowing me a 5 mile radius with another licensed driver in the car. I live with my 17 year old son who is my caregiver, but he only has his learners permit and is afraid to have me continue teaching him as it scared him greatly when those episodes happened and he's the one that saw it and had to call the ambulance. I'll be going to Jacksonville, FL Mayo Clinic and have to ride on non-emergency transportation.

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Replies to "Diabetes and fatty liver - I have been an auditor for years and am still waiting..."

I have previously been a governmental and non-profit auditor, but due to memory issues and inability to drive to clients, I'm not able to work. Having been really independent all my life, being home bound is a challenge.

@beckyy39, You have the one symptom that I did not experience. However I can link you to members who do have experience with HE.

Here is a link that will take you directly to pg 30 where there are 4-5 pages of conversation about HE(Hepatic Encephalopathy) Just click on the link.
To ask a question – go to the reply as you have done here to reach me. Address the member by his/her @name and they will be notified.

GroupsTransplantsLiver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/?pg=30

The support from this site helpful. I have been traveling down this road since 2006. I was taking lactulose and last year and I ended up going to ER and diagnosed with liver cancer last February. Things happened fast and I received a liver transplant at Mayo AZ in August. Hold on but Mayo has your back and will support you all the way..

Hi, @beckyy39 I too welcome you to Connect. I also dealt with HE episodes from NASH cirrhosis. My episodes were isolated, when I was not having one I was perfectly cognizant, and I either woke up with that fog or I could predict it coming because I would get a very upset stomach and feel tired. Since they were predictable I was able to drive right up until prior to having a transplant in September 2016, even driving alone on 3 hour drives up until the last summer before my transplant. At that point, I told my husband I did not feel comfortable doing that anymore. That was after having to resume taking lactulose.
I had a number of hospitalizations also due to HE episodes. Most of my episodes were mild enough that I could just sleep them off but a few were more severe and landed me in the hospital for about 3 days generally.
Has your hepatologist considered putting you on xifaxan? After I was diagnosed I went to Boston, to Mass General Hospital, and the hepatologist there prescribed xifaxan. I was able to drop lactulose and the xifaxan alone kept me from having an HE episode for almost a year. Then when I did have another that was signal that my liver had deteriorated further and I had to resume lactulose along with the xifaxan.
I was prescribed Lasix and then Spironolactone two or three months prior to my transplant. Prior to that my fluid retention did not require it. At that point though, about six weeks before I received my transplant, I gained about 35 pounds of fluid.
If you do have any questions, it sounds as if we have some common problems from your situation — have you been diagnosed as having cirrhosis? — please feel free to ask away.
JK

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