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 15, 2018
In reply to @sarahpalomita1 "In my case stomach problems were a daily issue. The thinking issues can sometimes by treated..." + (show)
@sarahpalomita1

In my case stomach problems were a daily issue. The thinking issues can sometimes by treated with lactalose.
Tell you doctor everything. Leave nothing out. Pray, listen and just keep going. Transplant is on the way. I have had two transplants. And am an active, happy, person again.

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@gaylea1 If you ever want to PM me, please feel free to. I went through much of what you are going through but I was very fortunate in that most days I was perfectly fine and lived a very normal life, doing all the regular things I had done -- going to my health club to do water exercise, shopping, cooking, and the list goes on. People who know what I had were amazed at how well I looked and how well I was functioning. When I had an HE episode though it was beyond horrible. Just writing that brings tears to my eyes. It wasn't until the last 4 - 6 weeks that I went downhill, having horrible edema and ascites. I lost a lot of weight early on after my diagnosis, intentionally knowing that my recuperation would be better if I was in better shape, and thankfully I saved some of the old clothes. I was thinking I might gain weight when I had to take prednisone, but that wasn't nearly as bad as the ascites. I felt like I had a barrel around me and my feet had water seeping out of them.

The only other problem I had early on was nausea when I had to take lactulose. UGH.

I also knew of no one else who had gone through or was going through it but my family was as supportive as they could be. I think it's pretty impossible to totally understand unless you have gone through a life-threatening condition yourself which caused you problems. A dear friend who lives in SF had gone through breast cancer and although totally different she could relate to me better than anyone else. She was a Godsend.

I had multiple hospital stays, but none more than a few days. What put you in the hospital for such a long period of time? Sorry if you have said before, but I do lose track of everyone's various ailments. A few of my hospital stays were due to HE episodes, and two near the end were due to bad blood numbers. They called me from the transplant clinic and told me to get right to my local hospital. I got there and the ER doc said my numbers were so bad I could have had a cardiac arrest! He wasn't comfortable with my condition so I was sent by ambulance to Boston, to my transplant center. I think the reason the NP in Boston wanted me to go local was that she was afraid something could happen on the drive, if my husband drove me. I do have some lost memories from when I had the HE episodes, and the other stays, even the one after my transplant, are a blur, I presume because I was on meds and very fatigued.

The leg cramps were the worst. I would get them at night and they were agonizing. A couple of years before my cirrhosis got the point of being diagnosed I was having horrible cramps in my thighs, definitely not medication related because I was not on any medications. My husband would want to rub them thinking it would help but I couldn't bear for him to touch them. One time they were so bad I think I almost passed out. At that point, we had no idea what the cause was. I came to realize that they only lasted about 15 minutes, more or less, and knowing there was an end in sight helped me to deal with them.
In Boston, transplants typically took place in the low 30s but I was transplanted at MELD 28, probably because I am blood type B. They are now managing to transplant more in the high 20s.

Don't ever think you are alone. I understand not wanting to burden your children. I tried to not make a big deal of things to them, but being adults they knew. I wish I knew about this group when I was going through everything, it really does help to have others who have been there or are there now also.
JK

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gaylea1 | @gaylea1 | Jul 16, 2018

@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.

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20 replies
gaylea1 | @gaylea1 | Jul 16, 2018

@contentandwell My transplant coordinator just called and told me my MELD score has reached 30 as of last Friday. My blood pressure is very low because of the dosage of the diuretics. I hope I post that my wait is over soon.

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1 reply
JK | @contentandwell | Jul 16, 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.

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@gayleaf1 With a MELD of 30 hopefully it will happen very soon. Which region are you in? I hope you have your bag packed and ready to go.

I presume if your husband couldn't wake you, it must have been from an HE episode. I had one that was pretty bad and I was very unresponsive and just stared into space. I think that may have been the first one that sent me to the hospital. My husband called a friend, a doctor, and he came over and said I needed to get to the hospital, so off we went. I was probably in an ambulance, I know I was a couple of times.

I marvel at how fortunate I was through the cirrhosis overall though. It really sounds as if things have been quite miserable for you for a long time.

Looking forward to hearing you have had a transplant and are on the other side. The first week or so may be really uncomfortable but keep in mind that it will pass in no time. I'm really excited for you, that this is going to happen soon! I was not anticipating the call for a couple of more months and when it came it was such a happy surprise. I am still amazed that we went to the hospital, about an hour's drive away in Boston, but we were both perfectly calm. One thing I really wish I had done, and had planned to do, was to bring a notebook with me to journal everything. If I had the whole thing to do again, I would have kept track from the very beginning, so much is a blur now. I had a notebook but forgot to pack it and my husband couldn't find it. Of course we thought we would remember and I could do it afterward, but we never did that.

You PM someone by clicking on their name or picture, that will bring you to that person's page and you can click on "private message".
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 16, 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, It will happen! And you will feel better.
I understand the 'housebound and stuck at home' feelings. I was too weak to go anywhere, and spent most of my time on the couch, propped up on pillows.
Have you tried Sarna Lotion for the itching? You can find it in the lotion section of the store. Also, when my itching became severe, my wrote a prescription for a bilebinder - cholestyramine.
Here is a good thought for you_ I was jaundiced really bad. After the transplant surgery in recovery, the first words that I remember hearing were my son saying, "Mom, your not yellow!"

Have you started making a list (on paper, or mentally) of the things that you dream of doing when you get better?
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 16, 2018
In reply to @gaylea1 "@contentandwell My transplant coordinator just called and told me my MELD score has reached 30 as..." + (show)
@gaylea1

@contentandwell My transplant coordinator just called and told me my MELD score has reached 30 as of last Friday. My blood pressure is very low because of the dosage of the diuretics. I hope I post that my wait is over soon.

Jump to this post

@gaylea1 I send you a hug and I hope that you will hear the phone real soon.
Rosemary

REPLY
JK | @contentandwell | Jul 16, 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 @gaylea1 I had to use Sarna a number of years ago, after we moved to our present home. I think my itching was caused by some mineral in our water (here we all have our own artesian wells) and Sarna really did help.
I only had the problems you speak of very close to the end, Rosemary. At that point, it was August/September and I was told it would probably be November at the earliest before I would be called. I was so miserable that I could not imagine how i could deal with it for that long. I will never forget how happy we were when they called - happy and stunned!
JK

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

I am not in a district...I live in London Ontario Canada. I have had a bag packed for over a year. Updating and changing it season by season. I'm not sure how much longer the wait will be. I know that when the team has a match I will be transplanted right away. I did suffer from HE episodes prior to being hospitalized but did not know what they were. Took a long time to regain some memory but had forgotten my PIN numbers for banking, telephone number and was unaware of what the date or time was. I stayed with my daughter for 4 months until I could function again. I am just scared about the actual operation. I live about 20 minutes from the transplant clinic at University Hospital so i have no travel issues. I always like to hear everyones stories about recovery. Give a me hope. Thank you for letting me know how to PM.

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 I have not heard of Sarna. I will have to check our pharmacies here in London. It may be an American product as well as bilebinder-cholestyramine. I spent yet another sleepless night scratching away. I do have many ideas about what I'd like to do after the surgery. I certainly am looking forward to getting my drivers license reinstated! I am also very jaundiced and I have no white in my eyes at all. I pray my call will come soon.

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Jeanene Headlee | @jeanene | Jul 17, 2018

Edit: I do not have any suggestions, sorry.

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