Liver transplant - Let's support each other

@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

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.

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.

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

@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.

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.

@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.

@luckonetj, I did not experience HE. But I can identify with what you have shared, and your post has touched me deeply and stirred up many memories and emotions. Thank you. We have much to be thankful for.

@contentandwell , my first doctor was a GP and was of no help. I looked for a liver specialist in my HMO network and found a liver surgeon who was the only liver specialist in network in my area. I asked for a referal to one of the transplant hospitals near me. My primary and liver doctor went back and forth deciding who would write the referal for a transplant evaluation. On my second and last meeting with the liver surgeon he telephoned a liver transplant surgeon at Cedar Sinai. I had a phone number and a name of a transplant surgeon when I entered the hospital at MELD 40. I gave the name and phone number to the attending nurse who them gave it to the department that found a open bed a Cedar Sinai. However, it was luck where I ended up because my condition was such that I would get the first bed that opened up at either UCLA, SC. USC Transplant centers. In hind sight I I credit wishful thinking and many prayers by my lovedones. My illness was ten years long.I was used to the illness and could have gone in either direction. My family made the loving choice to keep me around. The vote was 3-0 yet my vote didn't really count. I was tired of being sick and had planned for either outcome. The unknowns were disconcerting until I finally gave up trying to control the situation and trusted my doctors and my faith in the future. It all turned out OK.

@contentandwell, my wife informed me that I had a bought of HE a few days before my transplant while at Hospital. I remember being extremely talkative and upset.