1. < Transplants

Liver pre-transplant question

Posted by jodeej @jodeej, Mar 26, 2018

My husband has occasional issues with stomach upset resulting in diarrhea recently. Is this part of his liver issue or is it possibly something else? He went to to work today, but turned around and came right back home because of it. We do go back for his 3 month check-up the week of the 9th, so I can talk to the transplant team about it. I know his liver is really getting worse because his breath is starting to smell and his "brain fog" or cognition is getting worse.
Thanks,
JoDee

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JK | @contentandwell | Jul 17, 2018
In reply to @gaylea1 "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..." + (show)
@gaylea1

@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had begun to lose my memory, at times my bodily functions and I had very bad jaundice and edema. I didn't have any balance and going up and down stairs I had to pretty much do on my bum. I had one episode when I collapsed and was incoherent and unresponsive for 12 hours. I fell quite a few times and my edema was incredibly bad. One morning my husband could not wake me. When I came to he had called my daughter and they had to force me to get into an ambulance. I dont remember the ambulance ride or anything else for about 6 weeks. My kids never left my side. I'm not even sure to this day of what happened to me. Then i was in and out of hospital and in great pain due to a bleeding ulcer they found in my stomach. Then I suffered from a virus that took me back. They took my license away so since Nov 2016 I have been stuck at home. I live on the outskirts of the city with no bus service and taxis are darn expensive. I am a virtual prisoner here all day. Some days I can read some days I watch Netflix or Britbox. I find it hard to concentrate so I mainly lie down. Even walking in a store wears me out. I try to lead as normal a life as I can but I keep hitting road blocks. I have started drinking tonic water and Powerade to help relieve the cramping. I do have very bad itchiness due to the edema though. I take benadryl sometimes for relief. My family has been of great support but I know they worry about me daily. This disease is taking it's toll. I have not suffered any more HE incidents though. I take A LOT of lactulose daily. The doctors keep telling me I will recieve a liver any time now. Again, thank you for sharing your experiences as they truly help me feel less alone. I'm not sure how to PM you. Rosemarya gave me a link to a post that I read about staying strong for the surgery. It was very helpful. My fingers are cramping so back to resting I go.

Jump to this post

@rosemarya I was pretty well set, just forgot the notebook I wanted to journal in. Of course I only had to drive an hour+. you were further away, and weren't you already there when you got the call?
I hadn't showered yet and I asked if I could take the time to do that. They said not to, to get right there. We got there at around 2:30 or 3:00 in the afternoon, and the surgery did not take place until 12:30 that night! I don't know why they said no to a shower, maybe they were afraid I would eat something too.
JK

REPLY
JK | @contentandwell | Jul 17, 2018
In reply to @gaylea1 "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..." + (show)
@gaylea1

@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had begun to lose my memory, at times my bodily functions and I had very bad jaundice and edema. I didn't have any balance and going up and down stairs I had to pretty much do on my bum. I had one episode when I collapsed and was incoherent and unresponsive for 12 hours. I fell quite a few times and my edema was incredibly bad. One morning my husband could not wake me. When I came to he had called my daughter and they had to force me to get into an ambulance. I dont remember the ambulance ride or anything else for about 6 weeks. My kids never left my side. I'm not even sure to this day of what happened to me. Then i was in and out of hospital and in great pain due to a bleeding ulcer they found in my stomach. Then I suffered from a virus that took me back. They took my license away so since Nov 2016 I have been stuck at home. I live on the outskirts of the city with no bus service and taxis are darn expensive. I am a virtual prisoner here all day. Some days I can read some days I watch Netflix or Britbox. I find it hard to concentrate so I mainly lie down. Even walking in a store wears me out. I try to lead as normal a life as I can but I keep hitting road blocks. I have started drinking tonic water and Powerade to help relieve the cramping. I do have very bad itchiness due to the edema though. I take benadryl sometimes for relief. My family has been of great support but I know they worry about me daily. This disease is taking it's toll. I have not suffered any more HE incidents though. I take A LOT of lactulose daily. The doctors keep telling me I will recieve a liver any time now. Again, thank you for sharing your experiences as they truly help me feel less alone. I'm not sure how to PM you. Rosemarya gave me a link to a post that I read about staying strong for the surgery. It was very helpful. My fingers are cramping so back to resting I go.

Jump to this post

@rosemarya I am so impressed with how much you remember! It's such a blur to me. I do know that my surgery lasted for 7.5 hours! I have no idea why it would be that much longer than yours, but all is well that ends well, and mine certainly did. I was discharged on day 6.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 18, 2018
In reply to @gaylea1 "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..." + (show)
@gaylea1

@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had begun to lose my memory, at times my bodily functions and I had very bad jaundice and edema. I didn't have any balance and going up and down stairs I had to pretty much do on my bum. I had one episode when I collapsed and was incoherent and unresponsive for 12 hours. I fell quite a few times and my edema was incredibly bad. One morning my husband could not wake me. When I came to he had called my daughter and they had to force me to get into an ambulance. I dont remember the ambulance ride or anything else for about 6 weeks. My kids never left my side. I'm not even sure to this day of what happened to me. Then i was in and out of hospital and in great pain due to a bleeding ulcer they found in my stomach. Then I suffered from a virus that took me back. They took my license away so since Nov 2016 I have been stuck at home. I live on the outskirts of the city with no bus service and taxis are darn expensive. I am a virtual prisoner here all day. Some days I can read some days I watch Netflix or Britbox. I find it hard to concentrate so I mainly lie down. Even walking in a store wears me out. I try to lead as normal a life as I can but I keep hitting road blocks. I have started drinking tonic water and Powerade to help relieve the cramping. I do have very bad itchiness due to the edema though. I take benadryl sometimes for relief. My family has been of great support but I know they worry about me daily. This disease is taking it's toll. I have not suffered any more HE incidents though. I take A LOT of lactulose daily. The doctors keep telling me I will recieve a liver any time now. Again, thank you for sharing your experiences as they truly help me feel less alone. I'm not sure how to PM you. Rosemarya gave me a link to a post that I read about staying strong for the surgery. It was very helpful. My fingers are cramping so back to resting I go.

Jump to this post

@contentandwell, I cannot take credit for remembering all of this! My husband kept in touch with our family, friends back home via group emails. I was able to learn a lot about my situation by reading his emails! We have a collection on emails and replies that we have printed and saved in binders.
We have also had 'sit down and talk' times where I have questioned him for details and events that are fuzzy in my head. And it is very difficult for him to relive that period of our lives. I have also been able to read the reports in my medical record on my Mayo patient portal, but not anything from my UofK records.(so that is frustrating)

You mentioned forgetting your notebook. It is probably just as well. I kept a journal of sorts, but my post transplant entries did not happen until I was out of hospital.

I credit my surgical time to the experience and skill of my transplant surgeon and team. Everything went 'without a hitch and the organs began to work immediately' as reported to my husband by surgeon when I was out of surgery. I also feel that the amount of information that Mayo collected during my transplant evaluation had a major impact. Another factor was that the blood vessels that had to be joined, were near perfect fits.
Hugs,
Rosemary

REPLY
JK | @contentandwell | Jul 18, 2018
In reply to @gaylea1 "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..." + (show)
@gaylea1

@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had begun to lose my memory, at times my bodily functions and I had very bad jaundice and edema. I didn't have any balance and going up and down stairs I had to pretty much do on my bum. I had one episode when I collapsed and was incoherent and unresponsive for 12 hours. I fell quite a few times and my edema was incredibly bad. One morning my husband could not wake me. When I came to he had called my daughter and they had to force me to get into an ambulance. I dont remember the ambulance ride or anything else for about 6 weeks. My kids never left my side. I'm not even sure to this day of what happened to me. Then i was in and out of hospital and in great pain due to a bleeding ulcer they found in my stomach. Then I suffered from a virus that took me back. They took my license away so since Nov 2016 I have been stuck at home. I live on the outskirts of the city with no bus service and taxis are darn expensive. I am a virtual prisoner here all day. Some days I can read some days I watch Netflix or Britbox. I find it hard to concentrate so I mainly lie down. Even walking in a store wears me out. I try to lead as normal a life as I can but I keep hitting road blocks. I have started drinking tonic water and Powerade to help relieve the cramping. I do have very bad itchiness due to the edema though. I take benadryl sometimes for relief. My family has been of great support but I know they worry about me daily. This disease is taking it's toll. I have not suffered any more HE incidents though. I take A LOT of lactulose daily. The doctors keep telling me I will recieve a liver any time now. Again, thank you for sharing your experiences as they truly help me feel less alone. I'm not sure how to PM you. Rosemarya gave me a link to a post that I read about staying strong for the surgery. It was very helpful. My fingers are cramping so back to resting I go.

Jump to this post

@rosemarya that makes me feel a little bit better. 😉 I should have grilled my husband right after the hospital stay but I put it off and of course he ended up forgetting a lot also.
We both have been very fortunate at how well things have worked out. I will always be awe of the whole thing.
JK

REPLY
gaylea1 | @gaylea1 | Jul 18, 2018
In reply to @gaylea1 "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..." + (show)
@gaylea1

@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had begun to lose my memory, at times my bodily functions and I had very bad jaundice and edema. I didn't have any balance and going up and down stairs I had to pretty much do on my bum. I had one episode when I collapsed and was incoherent and unresponsive for 12 hours. I fell quite a few times and my edema was incredibly bad. One morning my husband could not wake me. When I came to he had called my daughter and they had to force me to get into an ambulance. I dont remember the ambulance ride or anything else for about 6 weeks. My kids never left my side. I'm not even sure to this day of what happened to me. Then i was in and out of hospital and in great pain due to a bleeding ulcer they found in my stomach. Then I suffered from a virus that took me back. They took my license away so since Nov 2016 I have been stuck at home. I live on the outskirts of the city with no bus service and taxis are darn expensive. I am a virtual prisoner here all day. Some days I can read some days I watch Netflix or Britbox. I find it hard to concentrate so I mainly lie down. Even walking in a store wears me out. I try to lead as normal a life as I can but I keep hitting road blocks. I have started drinking tonic water and Powerade to help relieve the cramping. I do have very bad itchiness due to the edema though. I take benadryl sometimes for relief. My family has been of great support but I know they worry about me daily. This disease is taking it's toll. I have not suffered any more HE incidents though. I take A LOT of lactulose daily. The doctors keep telling me I will recieve a liver any time now. Again, thank you for sharing your experiences as they truly help me feel less alone. I'm not sure how to PM you. Rosemarya gave me a link to a post that I read about staying strong for the surgery. It was very helpful. My fingers are cramping so back to resting I go.

Jump to this post

@contentandwell @rosemarya I have my kids tell me everything that has transpired and many times they tell me things that'd happened with doctors and how I reacted..or didn't react. There are so many things that I was unaware of. Ultrasounds, scopes, breathing tubes...they are still telling me about the sequence of events. I can't believe that I had no idea most if the time what was going on. They know about every doctor's visit and kept track of everything. Right down to what meds I've been prescribed, dosage and how to read my blood test results. I am one lucky Mum.

REPLY
JK | @contentandwell | Jul 18, 2018
In reply to @gaylea1 "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..." + (show)
@gaylea1

@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had begun to lose my memory, at times my bodily functions and I had very bad jaundice and edema. I didn't have any balance and going up and down stairs I had to pretty much do on my bum. I had one episode when I collapsed and was incoherent and unresponsive for 12 hours. I fell quite a few times and my edema was incredibly bad. One morning my husband could not wake me. When I came to he had called my daughter and they had to force me to get into an ambulance. I dont remember the ambulance ride or anything else for about 6 weeks. My kids never left my side. I'm not even sure to this day of what happened to me. Then i was in and out of hospital and in great pain due to a bleeding ulcer they found in my stomach. Then I suffered from a virus that took me back. They took my license away so since Nov 2016 I have been stuck at home. I live on the outskirts of the city with no bus service and taxis are darn expensive. I am a virtual prisoner here all day. Some days I can read some days I watch Netflix or Britbox. I find it hard to concentrate so I mainly lie down. Even walking in a store wears me out. I try to lead as normal a life as I can but I keep hitting road blocks. I have started drinking tonic water and Powerade to help relieve the cramping. I do have very bad itchiness due to the edema though. I take benadryl sometimes for relief. My family has been of great support but I know they worry about me daily. This disease is taking it's toll. I have not suffered any more HE incidents though. I take A LOT of lactulose daily. The doctors keep telling me I will recieve a liver any time now. Again, thank you for sharing your experiences as they truly help me feel less alone. I'm not sure how to PM you. Rosemarya gave me a link to a post that I read about staying strong for the surgery. It was very helpful. My fingers are cramping so back to resting I go.

Jump to this post

@gaylea1 you are lucky. I wish I had that kind of record. They must really care so much to have paid that much attention to everything.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 24, 2018

@gaylea1, I want to drop by and say "Hi". How are things going for you?

REPLY
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