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

Interested in more discussions like this? Go to the Transplants Support Group.

gaylea1 | @gaylea1 | 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

I really don't know how much more I can stand all of these terrible symptoms. I just need a few good nights of sleep and I could cope better with everything else. I have been on 3 different medications to help me sleep but none seem to work. I am not normally a person who complains but after the past 18 months I am finding myself more miserable than ever.

REPLY
Jeanene Headlee | @jeanene | Jul 17, 2018

I must withdraw my previous post. I assumed your husband was POST liver transplant. Please ignore my previous post.

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

@gaylea1 Great that you are so close to your transplant center, and that you have your bag all ready.
I did forget things like the date (my defense was "you stuck me in this room in a hospital with no outside contact, how the heck do I know the date?") but when they asked me who was president and I said George Bush, I had no defense. They suggested that perhaps I had been a big Bush fan, but I was not.
Again, I guess I was very fortunate because I was back to normal within a few days, doing everything. They did tell me to not drive for two weeks, and to see my PCP before I did, but that was fine. Two weeks was a nuisance but tolerable.
Please do not be frightened of the surgery. You will feel so much better after it's over and done. It's such a glorious day to wake up and know that HE episodes are history. When I was hurting after surgery my husband would joyfully remind me "No more lactulose" because I really hated that stuff. More than likely you will hurt but they will give you medications to help with that. I one time did not ask for them, and was awake much of the night. The nurse came in and gently scolded me for not calling them. You need your rest and if discomfort is keeping you awake, do ask for more medication. That was when I most needed it.
Is the routine in Canada similar to that of the USA with a national registry, and regions?
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

@gaylea1 We pray that it will also.
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

@gaylea1 I know, even though I only went through the worst for a much shorter time than you are. You are being very strong. You just need to stay that way and hang in there a bit longer. My heart truly goes out to you.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

@gaylea1
I used to get it near the pharmacy counter, but I think it is also in the lotion/creams section. If you can't find it, maybe the pharmacist can suggest a similar over the counter lotion.
The chlorestyramine was a RX powder that I dissolved in water and drank. My GI prescribed it, maybe it was because of my particular liver disease that he prescribed it.
Another thing that I tried was using a bath soak (Aveeno -for itchy skin) was comforting while I soaked in it. A few minutes of partial relief was not worth the struggle that I had getting in/out of tub. My edema and ascites made movement difficult and burdensome. I even had to use a foot stool to get into and out of bed. Today, I find it hard to believe that I waas that sick, but I was.
I was jaundiced. too. I could not stand to look in the mirror because it frightened me how terrible I looked. And I felt as poorly as I looked.

I hope that your call comes soon, too.
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

@gaylea, Don't stress about the bag. I took one, but didn't even have time to open it, because my morning prior to surgery was too busy. I got call 6:42 AM, and instead of going to dialysis, we went to transplant dept where nurses were waiting for me. They even cheered and high-fived as Tom rolled my wheelchair down the hallway! (I had been in hospital several times, and so there were some familiar faces) During an abbreviated dialysis session, I had many doctor visits in preparation. And each one was extremely encouraging and positive, and excited for me! At that moment, I had absolutely no fear of the surgery. I had a real peace-of-mind that this was finally going to happen.
After the surgery, I was a little confused about events, but I was happy and relieved. The jaundice was gone immediately. I was taken from recovery to my room in a wheelchair. And the next morning I could eat breakfast - Coffee and toast have never tasted so good!

Prayers for you and all who are waiting.
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

@contentandwell, We had planned for every possible scenario for when we got the call, But when I did get it, I forgot everything.

REPLY
gaylea1 | @gaylea1 | 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 how long did your surgery last and how long were you in the hospital afterwards? I have my bag packed according to what I wanted and needed on previous trips to the hospital. Books, tablet...dressing gown socks and toothbrush etc. I have a special reading lamp that attaches to my book so I can read at night without a big light on. I am so looking forward to eating without nausea the loss of jaundice and No More Lactulose!!!

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

@gaylea1

I got my call at 6:42 on a Wed morning. (Neatest thing is that our boys were visiting us in Rochester from KY that week). We went to hospital from the Gift of Life Transplant House (where we were living at the time) on the shuttle - 7 blocks. After check-in, dialysis, etc, I remember being rolled to the operating room 1:30. I was greeted by the anesthesiologist who had visited me and explained everything to me. All of the attendants in the unit introduced themselves from behind their blue surgical masks. I believe this had a calming effect on me.
I learned that the actual surgery was an unbelievable 5 1/2 hours. My surgeon was spectacular, and the procedure went smoothly. the organs began to work right away. My husband said that they got to see me around 10:30 and then they went to get some sleep.
The first awareness I had was sometime the next morning when my son called out to me. It was wonderful to hear him say that I wasn't yellow!
I was really afraid of the surgery. I wanted to just go to sleep, and wake up and have it over- that is exactly what happened. I also worried about the medical 'stuff' and incision, but they took care of everything.

I was discharged from hospital on day 7. We were on our way home to Kentucky on day 20. Remember that each of us can have different post transplant schedules.
You will do fine. As my transplant surgeon told me, "You just need to show up and we'll do everything'.
Rosemary

REPLY
View MoreView Less
Please sign in or register to post a reply.