Liver transplant - Let's support each other

Good Morning, @kahlkream. I want to welcome you and to inform you that as a member on Connect you are welcome to participate in any of the support groups that are of interest to you. I see that you are in your 6th year with your liver transplant and I know that your experience has had its share of ups and downs, As for myself, I'm going on 15 years with my own set of experiences as the months and years have gone by since my transplant surgery at Mayo Rochester. I am available to help you locate groups that might be of interest to you, and where you can share your own experiences and ask questions.

@kahlkream, Here are a few questions that I offer as a way for us to get to now you better and to learn about your transplant story. What brings you to Connect? How are you getting along since your transplant? What would you like to share about your liver transplant?

I'm also 6 years post transplant

@tinamarie10, I want to share the following support group discussion with you. You will be able to meet other transplant recipients who are also discussing muscle soreness and joint pain since transplant. You will also see that @gphetteplace has posted there, too!

Joint Pain - Liver Transplant
https://connect.mayoclinic.org/discussion/joint-pain-liver-transplant/
You are a good daughter and caregiver. Your mom is blessed to have you at her side. ❤️

Thank you so much for answering. She’s on month 4 exactly since her surgery and on Tacrolimus. I will look that up for sure. I’m trying to understand, learn and help her get through this.

@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.