Liver transplant - Let's support each other

@tinamarie10 - when was her transplant? Calcineurin Inhibitors (Tacrolimus, Cyclosporine) can cause pain. I was an extreme case. Got to where I couldn’t get out of a chair without help. You can search for CIPS (calcineurin inhibitor pain syndrome) online. Usually starts within a year of transplant, but goes away within 2 years. Tell her to hang in there!

recently my mom started getting soreness in her muscles. To where it’s effecting her walking. Has anyone else run into this? Her family dr stated it’s possible one of her medication could be causing it but her coordinator is stating that none of them do.
Hope everyone has a great and safe Christmas with their families.

To melissa0919
Before I even had a transplant and my friends were calling me to reassure me, I was surprised at how many liver transplants they knew. Friend Sharon has a brother whose third time transplant several years ago is doing well and a local vet is still taking care of the city's pups, cats and other critters after his second transplant. You are not alone.
Though I have yet to face confirmed rejection, at 18 months post transplant I have had several possible rejection scares. After six months post transplant, I would get urgent calls from Mayo after my weekly blood draw results. Over the course of a nine month stretch, Mayo would tell me to come immediately for a biopsy (3), am ultrasound (2) or an ERCP (2). Of course I researched what happens if your body rejects the liver and I learned rejection isn't like an "on/off" light switch. There are several interventions that can turn around the signs of rejection and, if needed, there are many successful repeat transplants.
I have been given a blessing since my original prognosis two years ago when I was told I have two months to live. I treat each day as a lifetime and embrace each moment, challenging or not, as the richness and depth of living. As I have realized that the depth of grief we suffer is the reflection of the love we have. So is the fear of death as the reflection of the preciousness of living. So I focus on the moments of living and fight for them if need be.
I do hope this helps. ajdo129

@alh4, That is good to hear! I know that you must feel better, just by knowing that your doctor is not worried about the numbers! There have been times when I have paced the floor while worrying and wondering about a lab or symptom, and then my husband wili remind me to contact my transplant coordinator (nonurgent/nonemergency) thru the patient portal at Mayo.
Does your doctor expect that the dizziness is due to the tacrolimus?

Here is my invitation to you and your daughter. I don't recall having a holiday comment by a recipient and donor.
Holidays: Celebration or Challenge for Transplant Families
https://connect.mayoclinic.org/discussion/holidays-celebration-or-challenge/

I totally understand. The entire process is overwhelming. I waited nearly 2 years for a transplant after suffering septic shock, organ failure & permanent liver damage. I had 7 calls for possible transplant - and the first 6 were no-gos. I felt like my resolve was being tested every day. I had serious complications post transplant that required 2 more surgeries. So it’s not always an easy or straightforward process. But the human body & spirit are resilient. Please have faith in your medical team and try to stay as hopeful as possible. Know that you are not alone.

Thank you for your encouragement. I trying to be positive. I just had the idea I would get a new liver and get my old self back and that is far from what I have and am experiencing.

Thank you for the encouraging words and you’re right he will not put on us more than we are able to bare.

Thank you so much for the encouragement and thank you for getting me involved in communication with others. I’m trying to learn how to navigate through the group.

Thank you for the encouragement. It very much appreciated. I’m very overwhelmed by this. I just though I would get a new liver and everything would be ok and I would get my old self back.

So sorry to learn you are going thru this Melissa. I had my liver transplant about 20 months ago (deceased donor) - but have not experienced any rejection as of now. I also have several transplant friends who have gone through bouts of rejection - and their transplant teams have been successful in stabilizing them. I too will pray for the same result for you. As silverwoman says above - we will be fighting rejection for the rest of our lives - and storms will certainly come along. I believe that God does not give us more than we can handle.