Liver transplant - Let's support each other

@contentandwell the doctors haven't said too much. I experience the ligjt headedness daily. Mainly I get it going up and downstairs. Somtimes if I am carrying things I get dizzy too. I'm thinking more exercise is needed.

The first episode is how I found out that I had liver cancer, because they did a CT scan. Then I had several issues my temperature went up and I had to go to ER once again. They put a needle in my side and pumped all this fluid out. I guess it's part of the liver failure. I am on an adventure. Learning about things all along the path. i didn't know that this was a path that I would be taking, but trying to make the best of it. It's just hard to work because I bump into walls and I'm afraid to drive to work, and I'm also very confused it's hard to make good decisions.

@livertrex, I wish you the best and a speedy recovery. Are the Doctors recommending A partial Liver section? My liver specialist specialized in such surgeries.

No, I have cirrhosis that I contacted when I had hepatitis seeing 2006 attract attract. I'm on the list for a liver transplant.

I had my Liver, Kidney transplant 4 weeks ago and in the past week I've become very light-headed after walking 100' indoors. MAYO needs to do some checking, especially since I fell while using a walker. I'ts just like for a few seconds every bone in my body disappeared while I never got dizzy or shaky and was able to continue a conversation from my new floor view. I'm now stuck in a wheelchair anytime I go more than 100'. If anyone else has been though this, please advise. The MAYO in Phoenix also seems to have a bedsore problem as several people I've spoken with (all multiple organ transplants) seem to have this same problem. And after asking for a week - while in the Hospital Bed - it was largely ignored. While the Hospital is incredible some of the auxiliary patient support systems (scheduling) are not at the level as the rest of the Hospital.

I had two episodes of HE before my transplant which required hospitalization. My doctors said that they were caused by constipation which allowed the toxins and amonia to build up in my system I am surprised not to hear mention of the dreaded Lactulose! The cure for HE for me was several days of really high doses which literally cleaned out my system! It was horrific but it worked. Afterwards, I made sure that I took my Lactulose every day and I had no more episodes.

It's horrible stuff but it works.

@benlam11, I am happy to hear that you have received your liver transplant. Congratulations!
At 4 weeks you are at the beginning of your recovery and from my experience, the body needs time to get comfortable with its new organ plus recovery from a major surgery.
I am concerned, as you are, about your fall. Were you able to walk without assistance prior to your transplant? Did you come into transplant with any mobility issues? I ask because I had been active all my life, and my liver/kidney failure knocked me down, but with medical intervention and physical therapy, I did manage to regain some physical improvement prior to transplant surgery. I returned to my home 3 weeks after my transplant to gradually return to a new normal.

I assume that you are having frequent labs drawn to measure the levels of your antirejection meds? These can be hard to get adjusted to correct level in the beginning, too. Have you contacted your nurse coordinator?

Benlam11, The Office of Patient Experience is where to address concerns about your care experience at Mayo Clinic via phone, email, or letter. The Patient Experience staff are not equipped or authorized to answer medical questions or provide follow-up care.
Scottsdale or Phoenix campus: ARZOPE@mayo.edu 480-342-2651

@livertrex,
I would like to share some information that might be helpful to you and to others.
Liver Cancer.
https://www.mayoclinic.org/diseases-conditions/liver-cancer/symptoms-causes/syc-20353659
Infographic: Liver Cancer
https://www.mayoclinic.org/diseases-conditions/liver-cancer/multimedia/liver-cancer-infographic/ifg-20442997

Yes, I am very interested in Tacrolimus adverse reactions.

@jim1208 My shaky hands started long before I had HE episodes. At the time the doctor I went to said they were essential tremor, but since they no longer shake they were definitely from cirrhosis.
The hepatologist I went to after being diagnosed said I probably had cirrhosis for about 10 years, it takes that long for symptoms to really become apparent. During that time not only did I have shaky hands but my platelet count was dropping more and more. I was going to a hematologist for that and he diagnosed it as Immune thrombocytopenia (ITP). That generally causes bruising though and I did not have any unexpected bruising, just what is typical. I was also diagnosed with diabetes during that time, another tie-in with cirrhosis.

@kltchrmn Interestingly, I also had norovirus during my wait for a liver transplant. Coincidental? I still have some difficulty with word retrieval but I attribute that to getting older.

@luckonetj I was pretty good with HE before my transplant. I was on both xifaxan and lactulose and that seemed to keep me cognizant. I did have a hospital stay at one point in July but that episode was short-lived. They must have discharged me too soon though because I was home for one day and then back in the hospital for a day. I never got talkative, just the opposite. I became withdrawn and one time when I had a really bad episode I was almost catatonic. I actually remember that well. It was like I was a spectator to what was going on around me.
I live in NH and there are no liver transplant centers here. I am only about 55 miles north of Boston though so when I was finally diagnosed I went to a hepatologist there, at Mass General Hospital. She was great as are all of the transplant doctors. I feel so fortunate to have them so close by. There are two hepatologists in NH, up north at Dartmouth-Hitchcock Hospital.

@gaylea1 More exercise certainly cannot hurt. So, your doctor has not indicated if this is typical, and hopefully temporary?

@livertrex I too had malignant lesions in my liver from cirrhosis. They ablated them but there was still a trace when they dissected my liver after transplant so now I have to go for yearly MRIs. I never had fluid removed. I had no problem with it until about a month before I had my transplant. At that point I felt like I had a barrel around me. I had lost weight and thankfully saved my older clothes because otherwise I would have had nothing to wear. I did have off and on problems with edema which also got very bad shortly before my transplant. I could not get any shoes on my feet, just slippers.
JK