Hello! I am 16 weeks post transplant and have been actively searching for support groups to help me understand my new way of life. The mantra I use daily is " I am healing". (I tend to stress about getting better and think I should be doing more when I can't do as much as I would like). This is my way of reminding myself that my job right now is to listen to my body.
A little information about my journey: I had a disease call PLD (Polycystic Liver Disease) that became symptomatic. I was working right up to the time of transplant but exhausted and in pain and getting worse each day. I was not sure how much longer I could complete my daily tasks at work. My MELD score was low, therefore my best option was a live donor. All three of my adult sons went through the evaluation process and were not able to donate. This process took over a year from when they told me my only course of action was a transplant. My brother eventually became my donor and we went into surgery at Stanford on November 28, 2022. He is doing very well after selflessly putting himself through major surgery for me. They were able to accomplish the removal laparoscopically which made his recovery a bit easier. Interesting side note: my liver weighed over 20 lbs once they removed it. I am told by docs and those around me I am doing really well. I am dealing with bile duct issues and go in for another ERCP at the end of the month. Hopefully my leak has resolved and they can simply take out this last stent. If not, they will put in another. I am grateful for my doctors and the liver transplant team. I look forward to looking for posts about returning to work, lowering my Prograf dosage, managing set backs and emotions and managing my expectations while learning more about post transplant life.
Thanks in advance for simply being there to walk through this experience with me and others.