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@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.
Replies to "@contentandwell ..my liver disease - cirhossis had kicked in well before I was hospitalized. I had..."
@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
@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
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.
@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.
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.
@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
@gaylea1 We pray that it will also.
JK
@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
@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
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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