Post Transplant - Core numbness and weakness

@crystalfaye, @ajdo129 - Welcome to Mayo Connect. It is fantastic that you both have recently joined Connect - and - you are both recent liver transplant recipients. Congratulations on your liver transplants!
I am also a transplant recipient. I received a liver and kidney in 2009. Reading your posts brings back memories of my own post transplant recovery time. I was a daily walker before liver failure and kidney failure. I benefited from PT in hospital during pre transplant hospitalizations and also during my recovery time. I remember the discomfort of standing up straight and the back aches. As @katebw has already shared, walking and more walking as are excellent. You just have to listen to your body and be careful not to over do it!

What do you wish that you knew before your transplant that might have made your recovery easier for you and for your family?

I wish I had been forewarned about the tremors from tacrolimus. I was told there might be shakiness which I imaged as mild compared to the Parkinson's like tremors where I shake so bad at times I lose my balance.
I am seeing a physical therapist twice a week to work on balance snd strength. Also I am changing diet to eliminate my 1 cup of coffee a day and increase magnesium rich foods.

Everyone I know says I look great and how courageous I was to go through so much. Inside I don't feel great; I don't recognize myself in the mirror and; the emotional and mental aspects of my transplant journey have yet to catch up with my physical accomplishment.
It is awkward to to be so very greatful for a new life and ready to get back to teaching, dancing and everyday chores while facing debilitating and unpredictable symptoms that slog down those goals. I have accepted that the tremors may last a whole year and recovery is alot slower than implied.

My 4 month check up is around the corner and I am looking forward to decreasing some meds and finding out when I can add abdominal exercise to my aqua aerobics. When I can control my tremor induced loss of balance I will be back to the dance floor again.

I was not totally prepared for the vast range of emotions I am experiencing. Immediately after my transplant I was so mean!!! Totally not the norm for me. While that has dissipated, I find that I am not quite the communicator that I use to be. Yes, I loved to talk and interact with others. Today, not so much. 😢

@ajdo129 - Tremors are are frequently discussed by transplant recipients. They are bothersome and even frightening - at least they were for me in the beginning. I did discuss it with my transplant team and was assured that they would become less bothersome after my meds were reduced. I transplanted in 2009, so I don't remember when, but the tremors did almost go away completely. Now I do have them occasionally.
I used to complain to my husband about them, and he brushed it off. One day he needed me to hold something for him while working on a project, and said, "Your hands are shaking! Do they always shake like that?" I just took a deep breath and growled, "Yes". So, I want you to know that I get it! I'm not sure that everyone gets them, though. Be sure to ask your transplant team about them when you have your check-up.

Here are some places where tremors have been discussed:
-This and That and Talk about transplant -If I linked this correctly, you will find members talking about tremors on this page:
https://connect.mayoclinic.org/discussion/this-and-that-and-talk-my-transpant/?pg=137
-Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
-Tremors post kidney transplant
https://connect.mayoclinic.org/discussion/tremors-post-kidney-transplant/

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@crystalfaye, Transplant patients can experience a variety of emotions following their transplant.

Here is a discussion where members have shares about their post transplant changes. Very interesting! You are not alone.
-Changes after Transplant
https://connect.mayoclinic.org/discussion/changes-after-transplant/

You can talk and talk here, anytime! I hope that you will eventually return to your usual friendly chatty self.

@crystalfaye, I had forgotten that you are a recent transplant recipient - 6 weeks. As soon as I realized that, I knew that I needed to re-reply to you.
At 6 weeks, I also was moody and emotional. Medications, recovery, turmoil of adjusting to diet and medication schedule, and the relief after my difficult pre transplant health all played a part for me. I got so-o-o tired of people, when I returned home at 3 weeks, telling me how brave I was! Blah - I don't have a brave bone in my body! Each day was a struggle, each day was facing another day of waiting and wondering if I would get a transplant in time to live and if I would ever return home. Many people in my circle were ready to move on, as if nothing had happened or changed. any thought I was being too emotional and needed to just be happy the surgery went well. It isn't that easy!
Another thing that I remember is that I had a difficult time focusing or concentrating. Crystal, time will make it easier for you to resume communication and to enjoy it again. I think that as your medications are reduced, that you will also feel differently.
Does this sound like what you are experiencing?

Good morning!!! What you have described sounds somewhat identical. I just tell others that yes I am feeling better but unfortunately do not feel like going shopping, visiting, out to eat, etc. just yet. With my immunity being low I do not feel that it is wise to be exposed to others at this time. With that being said, I am extremely thankful and grateful for all of the love and support everyone has given me throughout my journey. Most especially the prayers that have been, and continue to be, lifted up to our Heavenly Father!!!!

sorry for butting in.
I had a heart transplant so not sure what you had replaced. Talk about tired and weak, I pretty much had to retrain my body. Walking, moving, sitting, whatever hurt. A lot. The Drs. said you went through a huge trauma to your body, both physical and mental. It takes a long time and one day you'll say, "hey I'm feeling pretty good today" Your body wants to heal give it time.

@jeff79922, Thanks for jumping in! All of us recipients have so much in common, even if we have received different organs.
After my transplant, I discovered that I needed to take a daily nap. My husband would take care of all possible interruptions and allow me to rest even if I didn't sleep. That helped a lot. These days, I don't nap as often, but I do enjoy a good nap.
Jeff, When was your heart transplant? What do you like to do on those good days that you mentioned?

The nap is a great thing especially when you have the guilt-free excuse that "Mayo says to do it"
I had my transplant 5 years ago. My "heart-averseray" is July 22nd. Good days include being with a grandchild, taking a walk with my dog, and accomplishing something career-wise.
Jeff

@crystalfaye, @ajdo129, @jeff79922
Here is a discussion that I think you will enjoy! Perhaps you have a photo that you will share soon.

-Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/