Liver pre-transplant question
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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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.
I must withdraw my previous post. I assumed your husband was POST liver transplant. Please ignore my previous 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
@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
@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
@contentandwell, We had planned for every possible scenario for when we got the call, But when I did get it, I forgot everything.
@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!!!
@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