Post Transplant - Core numbness and weakness

I am going on 4 months post transplant for my liver. I just stumbled across this list and I am reading this sitting at my dining table crying. While I’m surrounded by love ones who constantly encourage me, it is somehow a comforting feeling to hear your stories and know I am not alone. You all are writing as if you have access to my brain. THANK YOU!

I feel the same!!

@keithjp77 I want to extend my hand in a virtual handshake and Welcome to Connect. I know that I speak for everyone on Connect when I say that you are not alone in your feelings and emotions at discovering that you are in the company of others who are like you, who have walked a transplant journey like you have done. I'm happy that you have joined into this conversation and I look forward to hearing your transplant story when you are ready.

Congratulations on your recent liver transplant! How is your recovery and return to a normal life progressing for you?

@keithjp77
This journey can be a rollercoaster of emotions and thoughts that we have only some control over. Thank goodness you have loved ones around you. Let them read these posts as well. You are definitely not alone!
Stay well.
Ellen

Thank you. I am glad that sharing ghe journey helps you and others. I am now 6.5 months post transplant. My tremors lessened when the tac amount was reduced and when cellcept was discontinued. Physical therapy (PT) helped with balance, strength and agility. I still would have times when the tremors wreaked havoc during my PT sessions and that helped me with acceptance.
Last week during a ballroom dance lesson I had 10 minutes of tremors and muscled my way through it to have the last half hour of dancing go smoothly.
I have learned caffeine can agitate the tremors; a good night sleep can decrease the tremors and; napping as soon as morning tremors kick in saves me the more dramatic shakes. I either tuck my hands under me or lace my fingers and test hands on my chest to help me nap.
I hope that helps you.
Barbara

after 30 month of my liver transplant I still fighting remember this is no the same live we have before Liver Transplant. Be Positive and faith in God he always help you. I still have faith I will live longer even though my new liver start with new Cirrosis, Please fight and then you will cross the line to your new life

30 month of Liver Transplant keep doing work out specially with your legs and your arms I felt weak at the beginning but after 3 days of the transplant I stand up and walk around the Mayo Clinic in Arizona I was so weak in the following weeks all I said everything will become better and strong eat healthy and follow doctors guide

Keith,
I think it is normal to be in survival mode for a lot longer than we think we should be. I know that was the case for me. We struggle to keep our bodies going, until we can get a transplant. Then we are sliced open, rather sizably, to receive an organ from someone else's body. In my case, my body accepted the new kidney immediately, and returned to normal kidney function, within hours. My psych and body took much longer. I still work with it. There is just so much to process.

Before the transplant, I had dreams where I saw my life in snapshots float past me, and dreamt of dying, and just floating away. It was peaceful, not scary. At 10% kidney function, I think my mind was trying to prepare me for death. And then within hours of the transplant, I was no longer dying, but healing. How does the mind keep up with that?

Physically, I had numbness down my left leg, and abdomen. The kidney protruded like a 3-4 month pregnancy. I could not lay on my side for weeks. I could not roll over for months. My core strength was demolished. Many days, when I got up, the only thing I looked forward to, was when I could crawl back into bed and declare, I had made it through another day. I felt guilty for feeling bad. I wanted to just feel grateful. I was worried that maybe this was it. Maybe this was all the better I was going to feel. I dreaded having my second kidney removed(I had PKD), because I didn't think I could sustain another abdominal surgery. My brain was MUSH. I couldn't remember anything. An AARP crossword puzzle took me over an hour and a half to complete. I was 54 and felt like I was 84.

The good news is, it got continually better. I am 2 and a half years out. For me, I began to feel "normal" about 2 years after transplant. I don't know if that is encouraging, or not:) I think it is different for everyone. My abdomen healed and I have regained some core strength. I hike, ride bikes, swim, teach a dance class, and work-out at the gym several times a week. I have regained some brain power, and can read books, do crossword puzzles a lot quicker, and run my small business. I can chase my 17-year-old son around to tennis meets. I have a good life again.

Your body and mind will heal. Keep the faith.

@stephanierp this is such a beautiful telling it like it was and is- the emotional and physical leaps we all take during the transplant process. I had a liver transplant one year ago and I can relate to what you describe. I feel a whole lot better with a year under my belt but still work to get my strength back physically, and to let the aftershocks of all that fear and chaos quiet down. Thanks for chiming in!

@crystalfaye - I felt awful for the first 3 months. I was exhausted, nauseous, weak, tremors in my hands. Food tasted awful. I had a really hard time gaining weight and my TP team was all over me. I thought I would never turn a corner, but I did. Right around 3 months I felt better, a little more energy and food started tasting better. After that I would have milestones every 2-3 months. I am almost 1 year post transplant and really feel pretty good. Still have some fatigue. On the right side of my abdomen I am numb. It does get better, but I do remember thinking , “will I ever feel better!” Sure enough it happened, it will for you too! Keep on keeping on. You got this !