Liver transplant - Let's support each other

@gaylea1 Oh my goodness, you have been through some nightmares. I hope your upcoming procedure is less painful. I can understand your apprehension. I have been very fortunate in not having any post-transplant problems.

@joanaiken I never got the to coma stage with my HE episodes but I remember clearly one where I was sitting on the sofa and completely uncommunicative. It was like watching things going on outside and beyond me. My husband called our friends over, he is a doctor, and he told my husband to call an ambulance. I was basically catatonic. Such scary stuff.
JK

My HE went to the Coma stage twice. Once after I was misdiagnosed as a stoke case in Las Vegas, before they found my HE, and the second time a year later, near when I was completing the testing for a transplant. They moved me from Las Vegas to Phoenix without me knowing until a day later when the Mayo stabilized me. It still took days for me to answer simple questions. Everyone should stay with it. I'm now doing fine after receiving my transplant. It will be worth the effort. Rest and keep your spirits up, for there are highly trained professionals at these major centers that deal with all situations daily.

HE is very scary stuff. After the critical condition I was in prior to my second liver transplant, I have noticed some small cognitive changes. I attribute some of that to Prograf. When my dose was lowered my mind cleared, as a fog lifted.

Mayo in Phoenix has taken care of me since 2008 and I have the greatest respect for them. Saved my life more than once. Thanks for sharing your experience.

I did not realize that Prograf effected mind clarity. I had my dose increased by .5 per day several months ago. I have felt mental clarity diminished. I attributed it to getting older.

Thank you for your comment. I will talk to my Dr's.

I did not realize how much the Prograf had affected me, as I have been taking it for 10 years! This has been my recent experience with it. Everyone noticed the positive change and I felt more like my old self again, although I know aging may affect it. Your body may react differently. My dose was decreased dramatically. Currently dose is back up and Cellcept added due to liver and kidney issues. I think we tend to forget what powerful meds we take.

You made such a good point. We don't realize the powerful mess we take. Yikes! But thank God for them.

@joanaiken I was originally on prednisone, cellcept and prograf. After a few months I only took prograf and am now on 1mg every 12 hours. I think they might reduce it in April but the bloodwork will tell. I guess we're all taking meds according to our doctor's advice.

@contentandwell I remember (somewhat) of experiences similar to yours. I'm so happy that's all in the past.

@suzeaz, I also use age as a reason for many things! You make a good point that we should talk to our doctors, especially when taking these medicines, about our bothersome symptoms. Thank you for the reminder.
Sometimes I have been told that it (the symptom) is something I will adjust to, ot that I just need to live with, but at least I know that my transplanted organs are being cared for.
When my prograf is out of range I usually feel anxious and jittery and have a difficult time focusing on a task. I remember a time when I could not pull my car into one of 3 connected parking spaces in a parking lot. Another time I nearly went thru a red light at a busy intersection. Fortunately my husband was there to take over the driving. I called my transplant nurse as soon as the office opened. Labs and reduction of prograf came next.
Let us know what your doctor suggests.