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This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
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@contentandwell Hi there. I have a question about HE episodes. How do I know that I might be on the brink of an episode. Are there telltale signs I should be aware of? Sometimes I think one is coming but I don't trust my own thoughts. I need help please.
@gaylea1 The biggest telltale signs for me were my stomach really hurt -- it wasn't nausea, it was pain -- and I felt tired. When I felt like this I got myself home immediately, I never went far from home alone, just in case. Oftentimes my stomach would hurt and then I would be fine so I got to figuring that sometimes a stomachache is just a stomachache but in retrospect I wonder if I may have been on the brink of an HE episode that did not materialize into a full-blown one, since I generally do not get stomaches for no reason. Of course when I had cirrhosis I had a lot of ailments "for no reason".
I have come to realize though that we all differ a lot. Some people are in a constant fog, I was not. My episodes were isolated, would come on, go, and I would be fine again. That was a huge plus for me. No one ever said I had to stop driving because I was very cognizant most of the time and could predict an episode fairly accurately.
It's always best to be safe, and if you are out and even think remotely that you may be on the brink, get home.
It's a scary way to live, never knowing when you get up in the morning if one might occur that day. It's so wonderful to have that behind me. I know I have said this before, but when I think back on those episodes I actually do get tears in my eyes. After the hepatologist put me on xifaxan I went almost a year with no episodes, that was wonderful. When I did have one again, there were three factors that I had seen listed as possible causes: recent surgery - I had just had a very difficult ablation; infection - I had a case of norovirus, and not taking your meds - I was so sick when I had the norovirus that I am sure I was not holding my medications down. My son referred to that episode as being from "the perfect storm", and my husband and I agreed but to be cautious the NP at the hepatologist made me resume taking lactulose thinking that maybe it was because my condition had worsened, and that could have been the cause too.
JK
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2 Reactions@contentandwell I also had constant stomach ache for a couple of weeks but the doctor doubled my lanzaprozole and put me on Zantac every night. They seemed to think it is acid reflux. I am terrified of having another HE episode and some days I'm in a really foggy state. Thanks for your insight. At times i wonder if its a result of my meld getting higher.
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1 Reaction@gaylea1
I have mild HE. Been in Rifaximin and Lactulose for 2 yrs. No more stomach problems...IBS and acid reflux. I havent had a unidentifiable HE attack and dont want one. Deathly afraid of losing my license. So, I have a friend who is my designated caregiver. We arranged for him to answer the phone 24/7 and to come and drive me home..call 911 etc. If I feel remotely bad..I call. His # is on my I'D bracelet too. Friends like Gary are priceless! I sure wouldn't want to hurt someone in an accident. He gets it... and has a backup too. I'm single and very lucky.
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1 Reaction@jeanne5009 thanks for sharing! I've been on lactulose and Rifaxamin for 2 years also yet lately I've been on the brink feeling that HE episode is around the corner. Since I had no choice in the matter of losing my license I've been dependent on others. As soon as I started on the lactulose the ministry automatically revoked it. I have tried to get my doctors to complete the paperwork but to no avail. They will not reinstate until I'm off lactulose post transplant. I agree that maybe it's for the best. I would hate to cause an accident. I'm lucky to have quite a few family members who remain accessible 24/7. I've been thinking about a medical bracelet. I always have emergency numbers in my wallet. My thoughts are with you.
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3 Reactions@jeanne5009 It’s great that being single you have a designated caregiver. I cannot imagine what people without someone like that do.
How wonderful that you have gone so long without an HE episode too. What is your MELD at this point? That long stretch I had without any was great, even though it was always in the back of my mind. How could it not be? Prior to being on Rifaximin and Lactulose did you have any episodes or did they put you on those as a precautionary measure?
I too was afraid of losing my license but I guess they believed me and my husband when we both told them that I never had one during the day that didn’t have what was basically a warning, and that I was generally quite cognizant —they checked on that at each appointment. I did wake up a few times with HE but of course then I would not leave the house.
JK
@gaylea1 If you feel that you may be on the brink of having HE again it may be because your liver has decompensated further. That is what they felt happened to me, although we will always wonder if it could have been the coming together of three things that are mentioned as possibly leading to an HE episode.
JK
Thank you for sharing this. I send my love and prayers to all of these beautiful children. And hugs of appreciation to their caregivers.
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3 Reactions@rosemarya
I felt the same way when I first saw it, Rosemary. It is very touching.
Teresa, Even though it features children who are waiting for transplants, the message is universal.
I am going to share it with my girlfriend who is deaf. She is a member of our prayer shawl ministry, and ministers to our local deaf community.
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