Liver transplant - Let's support each other

@racing212 health problems really do cause fatigue, and you apparently have a couple of things contributing to it. Try to get more sleep than you usually need to see if that helps, or if possible take naps. I found naps to be essential when I was pre-transplant. Have you spoken to your doctor about it?
I hope your problems resolve soon so you can get on with a more active life. Do you know your MELD score now?
JK

It's gotten worse since my liver don't work right any more. I also had leukemia that also wore me out

@rowdyramsey I have been on just about every narcotic (hydrocodone, oxycodone, oxycontin, Dilaudid) at some point in time for knee replacements, the liver transplant, and a couple of other painful things but never for as long as you were. I was on either oxy or hydrocodone for a few months following my first TKR but for some reason I have so far been able to discontinue narcotics without a problem. Part of that may be that I have always been very conservative in how much I took.
That's good that you, yourself, took the initiative to discontinue the drugs, that does seem like an excessive amount and I suspect almost anyone would get dependent on them if they were taking them for that long.
You must be feeling much better now, I am happy for you, and impressed that you took care of this yourself.

@racing212 It seems a lot of people complain of fatigue. I have been having a problem with that recently but I don't think it is related to my liver transplant, I am pretty sure it is related to simply not sleeping very well. Are you able to get a good night's sleep? I often wake up and am exhausted still but can't fall back to sleep. I will get up, have breakfast and then after doing a few things return to bed for a nap. I can do that because I am retired.
JK

I get tired real easy. I fall asleep at the shop once in awhile and noone says anything. They put a shunt in my liver a year ago and that stopped the fluid build up

@rosemarya the only thing I can add about HE is that the the symptoms vary so much from person to person, and there are those very fortunate ones like yourself who never have HE.
Also, the other symptoms vary a lot from person to person. I never jaundiced, had loss of appetite (except during an HE episode and not always then even), only lost weight intentionally, did not have ascites until very shortly before my transplant, I was not itchy, and do not recall my palms being red.
Other common symptoms not mentioned here that many people have, me included, are shaky hands, (as my cirrhosis progressed I couldn’t get a spoonful of soup to my mouth), plus I was always very cold, had leg cramps (these were mostly in my thighs and were excruciating, but thankfully passed in about 10 - 15 minutes), declining platelet counts, and recently diagnosed diabetes.

HE was what brought the fact that there was something wrong to a head so I didn’t need an explanation, I had been having episodes for almost a year and a half at that point. I was monitored and I think I knew everything I needed to know after I finally had a diagnosis.
I went to my local hospital when I had HE episodes, in retrospect I wish my husband had gotten me to Mass General, my transplant hospital. My local hospital really was not that familiar with HE and my treatment was pretty bad.
Another time the NP called and said to get to the hospital immediately, to go local. My hematocrit and hemoglobin counts were very low. I think the counts were so low she was concerned that if my husband drove me to Boston, a good hour away, I could have a problem because the doctor at the local hospital said my counts were so low that I could have had a cardiac arrest. They sent me by ambulance to Mass General. I am not sure if my situation would have been handled as well in the local hospital.
For those going through this, I can only say if you have found an excellent transplant center and an excellent hepatologist, just do what is suggested and take care of yourself, let them know if anything is wrong. Be confident and positive, better days will come.
If you have not yet chosen a transplant center, do your research and find the best that is geographically available to you, or that you can get to if it is a distance. There are a number of helpful sites, one is SRTR.org.
JK

Hello fellow liver patients! If your alive...it’s a great day for celebrating!! I have a question for everyone! What was ur opiate medication? I’m trying to see if anyone can relate to me. In 2004 they removed a tumor on my remaining ovary. I only had one cause I had ovarian cancer at 19 yrs. old. So,I was to have my one ovary removed(hysterectomy) so the cancer Dosent come back. So in 2004 they reluctantly did surgery ( hysterectomy) they considered me very high risk for surgery. My liver was so far gone,this is the first time my liver was mentioned. The doc did the surgery and then relayed the condition of my liver to me and family. He said it was a big bag of peanuts! The liver that is. Anyway they put me on narcotics stating after surgery. They kept me on a daily stream of Dilaudid. The point 4s! I was on them daily till my transplant for 2 straight years. Then<get this,they continued to give me every month 180 point 4 dilaudids from transplant till last year. So from 2014 till 2018,I was on this narcotic daily. Never missed a day. That is daily use of the strongest narcotics out there. I also was on them every 4-6 hrs for a solid 5 years. Four yrs. after transplant I was still taking the same amount. I think I was over prescribed!! I finally took matters in my own hands. I refused anymore scripts and had to get on a methadone 30 day detox program. That’s how I got off the narcotics that were prescribed every month! Have any of you had this problem either now or before?

@racing212, Good for you!
Don't you hate to hear those kinds of comments? I can clearly remember hearing disaster stories from some people while I was waiting and struggling with my awful symptoms. I chose not to listen to them.

I am so happy for you that you are going strong even with a rising MELD. Keep on doing what you are doing and following the advice of your medical team. And congratulations on the relief from ascites and those paracentesis procedures. (I had to use that word because I. too, had many of them. And I even learned how to spell it!)

Over all, How are you feeling? Do you have nausea or tiredness? Do you have any idea why the fluids are not building us now?

I was in Las Vegas Hospitals for a month Last Year before they finally correctly diagnosed me with ammonia in the liver. I also was given Lactulose and xifaxan. I went to the Mayo in Phoenix and they looked at my past year of tests and determined I needed a Liver and Kidney transplant. For me it was a 9 month process of testing if I was healthy enough to qualify (I was 68). Last June again the ammonia caught up with me, and after calling the MAYO, they insisted I go to a local hospital and they would monitor me. Five days later I woke up and was told I was at the MAYO in Phoenix. After being stabilized, I had one additional test, which I fortunately passed and was placed on the transplant list that day and incredibly received the transplants the next day. Look at the success rate of each hospital and the five year survival rate. Do not skimp on this research. Be suspicious of low volume hospitals. The Transplant for me were not easy with major pain until we finally (2 weeks) discovered I cannot tolerate "OXY" drugs, however now, 5 months out (while I still have some problems) my overall health is better than it was 10 years ago. Get on the list ASAP, the sooner it happens the better, It will be based on your MELD score not first come first served. You will also need to be within a few hours of the transplant center and you will need to remain within a few minutes of the center for 6 weeks after discharge. Also price out the medications you need (some are quite expensive) and you will possibly need to hunt for help.
Good Luck, and I hope hearing from someone who has just been through it helps.

I had all these symptoms (regarding women) except the ascites.. It was brutal.

@racing212 I found out after my transplant that my husband and sister didn’t think I was going to make it. When I discovered that I wondered if the hepatologist and her NP that I had prior to transplant thought that too because when they visited me in the hospital they were both so excited!
JK