Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

@contentandwell

So, @rosemarya you are O.K. driving now? That must have been scary. I feel so fortunate that even Pre-transplant I never had to stop driving. I knew not to even leave the house when I had an HE episode of any strength, even very mild ones. I think my experience was atypical because I could tell when I was getting one, and when I had one it was like I was an observer of my own irrational behavior.
JK

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JK, i hear that term all the time what is a HE episode if you don't mind me asking?

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@contentandwell

@danab. I noticed a huge difference in my vision right after turning 40, which I have heard is a common age for changes to start. I had cataracts and the surgery for that replaces the lens in your eye so your vision immediately improves, but the reading vision has continued to get worse. My husband had the most incredible distant vision but he too does not have the eyesight he used to have.

If not for the cataract surgery I wonder how my distant vision would be now.
JK

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Actually i had cataract surgery in both eyes oh probably 7 or 8 years ago. And yes i had a problem with halos around headlights driving at night. But yes my vision got a lot better after that. But this is somewhat new and im not surprised both my parents wore glasses since childhood so i feel lucky it took this long. But im also going to ask the optometrist about it because i remember him telling me ita possible that the replacement lenses can be an issue which i seem to remember is takin care of with a simple laser procedure so ill find out this week i see him Wednesday.

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@danab

JK, i hear that term all the time what is a HE episode if you don't mind me asking?

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@danab HE is short for hepatic encephalopathy. HE episodes occur when your liver cannot filter out the toxins due to extensive damage so the toxin, ammonia, goes to your brain causing confusion, irrationality, and various symptoms. I had some mild ones that went away just by taking a good, long nap, but also some more severe ones that required hospitalization. My episodes were fairly distinct, most of the time I was perfectly cognizant, but some people are in an almost constant fog. When people are in a constant fog, or have HE episodes that come on quickly and unpredictably, they can’t drive anymore. I would either wake up with an HE episode or could predict it because I would get a severe stomachache, something I have not heard of others having. I was able to lead my normal life most of the time.
At their most severe they can cause coma and even death.
For me, not being in control of myself was frightening and extremely upsetting. I had it in my mind that if I would firmly resist it I could prevent it, but that is not true.

I have heard that some people do have a second surgery, I had forgotten about that because mine have been fine.
JK

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I got my first pair of glasses on my 40th birthday. They were mainly reading glasses as I could see distances quite clearly. Just a bit of personal input.

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@contentandwell

So, @rosemarya you are O.K. driving now? That must have been scary. I feel so fortunate that even Pre-transplant I never had to stop driving. I knew not to even leave the house when I had an HE episode of any strength, even very mild ones. I think my experience was atypical because I could tell when I was getting one, and when I had one it was like I was an observer of my own irrational behavior.
JK

Jump to this post

@contentandwell my first HE episode is what triggered my liver disease diagnosis. I was comatose for a week and in and out of consciousness for the following two weeks. It was touch and go as to whether I would survive it was so severe. After another month in hospital I was on a pretty heavy lactulose regime. I still had HE episodes on and off pretransplant. Some I was hospitalized for and the minor ones I just let take course. I have no memory of about 10 months that I lost. I had no warning signals just full on episodes. So happy that's behind me now.

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I am pretransplant. In Jan 1019 I had severe HE episodes. For several days I was in a coma. I was so confused for over a month. On lactulose around the clock. Nonstop diarrhea for quite some period of time. Had PT to be able to walk. Finally by May 2019 I was better, less confused, and able to function. I am so much better. My Meld went from 26 to 13. Labs are fine now but I know one day I will need a liver transplant. I see my Doc every 6 months to have labs done. I take a lot of meds, yet am in good shape now.

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@gaylea1

@contentandwell my first HE episode is what triggered my liver disease diagnosis. I was comatose for a week and in and out of consciousness for the following two weeks. It was touch and go as to whether I would survive it was so severe. After another month in hospital I was on a pretty heavy lactulose regime. I still had HE episodes on and off pretransplant. Some I was hospitalized for and the minor ones I just let take course. I have no memory of about 10 months that I lost. I had no warning signals just full on episodes. So happy that's behind me now.

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@gaylea1 You had some very severe ones. I do remember one where I was basically catatonic. I sat on the sofa like a zombie yet I was aware of most of what was going on around me. That was one of the episodes that did land me in the hospital. My hospital stays were never more than 3 days. Initially I just used lactulose but when I went to a hepatologist she prescribed xifaxan and that kept me HE free for almost a year. When I had another episode it was assumed that my condition had worsened so then I had to take lactulose along with xifaxan.
An HE episode was also the first thing that triggered the search for a cause in me. I had shaky hands, declining platelet counts, leg cramps, feeling cold all of the time before that but those symptoms were never added up with the HE episode so it took a long time (almost a year and a half) to get a diagnosis. When you had an HE episode was cirrhosis immediately suspected? I have no idea why it was not for me, but as I have said many times, I will never again rely on the local medical community to diagnose me with anything more complex than a cold.

@johnshaw That's wonderful that after having such a severe HE episode your MELD has now decreased and you are doing so much better. Congratulations on being in good shape now, I hope it continues. If the time does come when you need a transplant try to not worry about it though, it was not bad at all for me.
What have you done to improve your MELD so much?
JK

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Changed my lifestyle, now vegetarian, run or bike daily, don’t smoke or drink beer. Has made a difference.

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@contentandwell

@danab HE is short for hepatic encephalopathy. HE episodes occur when your liver cannot filter out the toxins due to extensive damage so the toxin, ammonia, goes to your brain causing confusion, irrationality, and various symptoms. I had some mild ones that went away just by taking a good, long nap, but also some more severe ones that required hospitalization. My episodes were fairly distinct, most of the time I was perfectly cognizant, but some people are in an almost constant fog. When people are in a constant fog, or have HE episodes that come on quickly and unpredictably, they can’t drive anymore. I would either wake up with an HE episode or could predict it because I would get a severe stomachache, something I have not heard of others having. I was able to lead my normal life most of the time.
At their most severe they can cause coma and even death.
For me, not being in control of myself was frightening and extremely upsetting. I had it in my mind that if I would firmly resist it I could prevent it, but that is not true.

I have heard that some people do have a second surgery, I had forgotten about that because mine have been fine.
JK

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Thanks JK we all have our problems i see which we must deal with, Thank you for the explanation.

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@johnshaw

Changed my lifestyle, now vegetarian, run or bike daily, don’t smoke or drink beer. Has made a difference.

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@johnshaw that’s impressive. Other than going vegetarian I did the other things. What do you eat for protein? My son-in-law was brought up vegetarian and still eats very little meat, just occasionally chicken so I’m always interested in alternatives for him.
JK

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Running or biking 5 miles a day. Soy products. Raw veggies, fruit, rice, beans, sometimes fish, water, weightlifting, exercises, I guess that’s about it. John

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@contentandwell

@gaylea1 You had some very severe ones. I do remember one where I was basically catatonic. I sat on the sofa like a zombie yet I was aware of most of what was going on around me. That was one of the episodes that did land me in the hospital. My hospital stays were never more than 3 days. Initially I just used lactulose but when I went to a hepatologist she prescribed xifaxan and that kept me HE free for almost a year. When I had another episode it was assumed that my condition had worsened so then I had to take lactulose along with xifaxan.
An HE episode was also the first thing that triggered the search for a cause in me. I had shaky hands, declining platelet counts, leg cramps, feeling cold all of the time before that but those symptoms were never added up with the HE episode so it took a long time (almost a year and a half) to get a diagnosis. When you had an HE episode was cirrhosis immediately suspected? I have no idea why it was not for me, but as I have said many times, I will never again rely on the local medical community to diagnose me with anything more complex than a cold.

@johnshaw That's wonderful that after having such a severe HE episode your MELD has now decreased and you are doing so much better. Congratulations on being in good shape now, I hope it continues. If the time does come when you need a transplant try to not worry about it though, it was not bad at all for me.
What have you done to improve your MELD so much?
JK

Jump to this post

@contentandwell I was also on rifaxomin which complimented the lactulose pretransplant. Yes my HE episodes were debilitating. Total memory loss. I had no idea what month, what year or what day it was. I couldn't remember my address, my phone number or any important dates. It took me almost a full year to start remembering anything day to day. Post transplant my memory has dramatically changed but limited to only 4 months after surgery. I know that I spent Christmas 2018 on the transplant ward in hospital. and went home sometime in the new year. I then was re-admitted 2 weeks later to have surgery on an artery between my heart and liver and was reopened along my surgical scar and had all my staples administered for a 2nd time. Then I had a blocked bile duct that took 4 ERCPs to implant a stent. I contracted pancreatitis 3 times and if you look it up it is the most painful thing to endure. I was on morphine, tramadol, and other painkillers which I cant remember. It's been a trial to say the least. Today I had a cancerous skin lesion removed from my arm (which developed post transplant) by the plastic surgeon. Pathology results pending. Yes I'm grateful still. I'm alive and soon I will be close to recovery. My one year anniversary is Nov 28th.

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@johnshaw

I am pretransplant. In Jan 1019 I had severe HE episodes. For several days I was in a coma. I was so confused for over a month. On lactulose around the clock. Nonstop diarrhea for quite some period of time. Had PT to be able to walk. Finally by May 2019 I was better, less confused, and able to function. I am so much better. My Meld went from 26 to 13. Labs are fine now but I know one day I will need a liver transplant. I see my Doc every 6 months to have labs done. I take a lot of meds, yet am in good shape now.

Jump to this post

@johnshaw that's terrific that you lowered your MELD. Mine was about 25 when first diagnosed and shot to over 30 in months. I was getting up there in numbers when i received my liver. I was eating mostly vegetarian and worked out 3 times a week. I guess it just wasn't in the cards for me.

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@gaylea1

@contentandwell I was also on rifaxomin which complimented the lactulose pretransplant. Yes my HE episodes were debilitating. Total memory loss. I had no idea what month, what year or what day it was. I couldn't remember my address, my phone number or any important dates. It took me almost a full year to start remembering anything day to day. Post transplant my memory has dramatically changed but limited to only 4 months after surgery. I know that I spent Christmas 2018 on the transplant ward in hospital. and went home sometime in the new year. I then was re-admitted 2 weeks later to have surgery on an artery between my heart and liver and was reopened along my surgical scar and had all my staples administered for a 2nd time. Then I had a blocked bile duct that took 4 ERCPs to implant a stent. I contracted pancreatitis 3 times and if you look it up it is the most painful thing to endure. I was on morphine, tramadol, and other painkillers which I cant remember. It's been a trial to say the least. Today I had a cancerous skin lesion removed from my arm (which developed post transplant) by the plastic surgeon. Pathology results pending. Yes I'm grateful still. I'm alive and soon I will be close to recovery. My one year anniversary is Nov 28th.

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I see you have a positive attitude that will always help you get over the issues. I pray the future is bright and this period will be a memory real soon.

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It’s difficult to predict the course of this problem. I know people who did the right thing yet became sicker. I keep things in perspective. This has caused me to be in great shape yet I know anything is possible and one day I will need a transplant.

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