Liver transplant - Let's support each other

@autoimmunecirr, Welcome to Connect. We are glad you have joined us .
I had a liver and kidney transplant in 2009 and I joined Mayo Connect because I wanted to meet other transplant recipients. I have not been disappointed! In fact I am constantly amaze at the variety of transplant experiences that everyone shares as a way to help and support each other.
It sounds like your autoimmune hepatitus was discovered after you experienced sudden liver failure. That had to be frightening.
Prednisone is a medicine that most of us have been on, or are currently taking. I know that you will feel better after you get your transplant. Is the prednisone causing you many bothersome side effects? What are some questions that you would like to ask about transplant?

Here is some information I would like to share about our online community:
Tips for Participating in an Online Communityl
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/tips-for-participating-in-an-online-community/

Hi @xplantsister Welcome to Connect. Your brother is so fortunate to have you watching out for him
I had a liver transplant in September 2016. From what I have learned, there are so many variations on how a person feels afterward that there is really nothing that is simply "normal". I was exceptionally lucky, when I went for my first post-transplant check-up I stunned the transplant team with how well I looked. I was in the hospital for six days and within two or three days after discharge, I felt great.
Others have many more problems and I hear of many who have a lot of discomfort around their incision. I did not have that at all.
You have come to a great place to hear about others but I think the best place to start is to say what symptoms you are wondering about so if people have experienced similar symptoms they can reassure you. Anything more than very minor should be run by the transplant team though. I still check with them on every medication that is prescribed for me by other doctors, and occasionally on other things. That's what they are there for. My transplant at Mass General in Boston has been incredible. I have a feeling that transplant teams in most hospitals are.

@autoimmunecirr Hi and welcome to Connect to you also. You have been a transplant candidate for a year and a half now, have they indicated you are getting close in your MELD numbers to the top of the candidate list? I was a candidate for a bit less than a year and a half. I was not on prednisone then, my cirrhosis was from NASH and I don't know if that makes a difference, but I have been on prednisone since my transplant since my blood numbers run a bit low. I suspect I will be on it forever. 😕 I do not like it either.
As I commented to @xplantsister, every person seems to be different and two months after transplant for @gphetteplace is very quick but I was pretty much back to everything by then also -- I am retired so I did not have to resume working. There are some people who take a year to get back to feeling great. As soon as they cleared me for pool aerobics I was back to that and also back to exercising in the gym.
You don't mention how you are really feeling but for me, I found that staying active and exercising pre-transplant was a huge help for post-transplant recuperation. I felt pretty well most through most of my waiting time, except for having HE episodes, and except for the last six weeks, and I believe that getting fitter and intentionally losing weight (I was pretty heavy) were a big part of my success. If you are well enough to maintain an exercise program I would highly recommend it.
JK

I had a Liver and Kidney Transplant in June 2019. After 6 weeks I still felt terrible and had the concerns regarding many things, Like literally feeling my Liver move around, leakage through the incisions, numerous medication adjustments, further testing at the Hospital with a few days re-admission, etc. However, as my weekly Blood Work showed - things were stabilizing. I never hesitated to send a Portal Message to my Coordinator, and always received a call or Portal Message back. I urge you to also always contact them and ask about your concerns. They work with similar patients Daily and can quickly ascertain your concerns. For me, the first 2 months were concerning, the following two months - were getting used to my new normal, and now I feel better than I have in years. I do have a lifetime drug regiment, as we all do.

@gphetteplace and @rosemarya, thank you for your replies. After I wrote the introductory message, my brother was re-admitted to the hospital (2nd time not including transplant operation). It is somewhat a relief since he is under the care of professionals (and scary at the same time). Several things in this episode concerned us and, maybe, these signs will help others. His teeth were chattering even though he was not cold and his tremors (which he developed prior to the transplant due to the ammonia accumulation) had returned and were worse. He was more than usually fatigued and so pale and was having trouble urinating. He said the "normal" urges for urination and BM were "not right." We also were having trouble getting him to eat. Ultimately, he let us call the post-transplant coordinator. Now, the MDs are running many tests and, hopefully, we will have a clearer picture soon. I am so grateful to know others have successfully managed this road and I wish you all the best health.

@xplantsister Your brother's symptoms are definitely not typical from what I know so I am glad he is now inpatient for them to figure out the problem. Hopefully, it will be a minor medication adjustment.
I hope you will let us know how he is doing and what they discover. I am sure it is very concerning for you and your brother. As I commented before, he really is lucky to have a guardian angel sister watching out for him.
JK

@xplantsister, I am thinking about your brother and hoping that he will be able to get some rest tonight.

Hopefully this is a minor bump in the road to recovery. Am I correct to assume that you are at his transplant hospital? It just sounds like that to me from reading your post. What about you? Do you live nearby? Will you be able to get some sleep and something to eat. As a caregiver, your health and wellbeing is equally important.

@rosemaya, no one is allowed in the hospital due to Covid19. I talk with him and his medical professionals several times a day. He was resting comfortably last time I spoke with him. They are looking at his kidney and bone marrow function, high creatinine and low WBCs and RBCs. Could be related to his medications. The MDs are adjusting meds and keeping an eye on him. Thank you for your kind wishes.

@xplantsister, I did not even think of the no visitor policy. Sorry that I mentioned you being there with him. I am happy to hear that he is resting comfortably and that the doctors are looking into all possibilities.
Where did he get his transplant? I got mine at Mayo Rochester,

I am having trouble getting my Tacrolinus medicine. My CVS Drug Store is out as are others. They are still trying to get it. Told me to call other pharmacies and then have my doctor write an order at that store. Been trying to get hold of my coordinator at Mayo Jacksonville for 2 days no reply. Anyone else is this situation or have any helpful info,

@jerrynord have you tried the pharmacy at the Mayo building? I have also gotten them from Walgreen's here in Jacksonville. Good luck.