Liver and Liver & Kidney Transplant Support Meeting

I am 23 years out from a liver transplant at Froedtert Hospital. I take 2 mg Tacrolimus twice a day, only recently reduced from 3 twice per day. I do have early stage of kidney disease & am watched closely.

I pray all goes well.

@joycereed13
We also are being treated by Froedert and will probably go on the list this summer for a liver transplant. Can you share any suggestions to make after surgery regarding anything that you would do differently? Like caregiver support, how long do you need 24/7 support. How long before you felt you could begin walking more than just around the house. Just any info that would help us is most appreciated.

Hi! You are certainly on a life restoring journey! I wish you well & pray you are connected with your church & friends & family!
Walking begins maybe 2 nd day or 3rd. I held a pillow to my incision area & walked the halls. When I got home I also was told to walk 10 - 20 minutes a day. Boring, unless someone was encouraging me. I walked a big circle in my driveway as I was still in pjs & house coat!
The support system I had was developed by a good friend & retired nurse. She was the boss— my lifeline. She had someone calling me every morning & night while I awaited a transplant. I couldn’t drive for a long time but she had transportation lined up if needed. I lived alone & my kids lived an hour or more away from me.
In the hospital the nurse gave me a thick binder & told me I would not be released till I knew everything in that binder. So when I went home I knew all my meds- something we should know anyway. I was diabetic for awhile & had a nurse friend that helped.

So, get yourself a leader of a support group unless you have a spouse or family ready to support & spend time with you!! Know your meds! Know how to care for yourself. And did I mention a support group? I’m 23 years out. My original doc has retired. I loved him!! The staff at Froedtert is excellent!!! You are in good hands.
If you aren’t connected to a church, find one. You will die sooner if you need a transplant & don’t get it. You will find solace, comfort & even joy when connected with Jesus!! You may even experience an amazing event/experience!!!
God bless you!!
Oh, ask Froedtert if they have a support group.

Thank you so much!🙏

I had a Liver Transplant in January 2022, I am now waiting for a kidney as my kidneys decided not to kick in after during and after the Transplanted Liver.
I have been a very poor eater for the last 9months at least I am just so very tired.
They would like me to lose a bit of weight can I have any suggestions for someone who probably only has a dessert spoon of each food option cooked and sometimes cannot eat all that..thank you guys.

Hi. I had liver transplant many years ago. Recently diagnosed with NASH and was told to lose 10 percent of body weight. I had to lose and it was overwhelming. Journaling everything u eat, calorie counting. I lost weight while recuperating where I had hardly any exercise! Journaling works and there are loads of apps to track all day long. Good luck.