Liver transplant - Let's support each other

@rosemarya Thank you for inquiring about my son, Dan!! Actually, the spouse of a coworker to my husband had PBC & underwent transplant. I know the 2 diseases are different but the couple took Dan under their wings & helped us prepare for transplant as the husband was transplanted at the same center as Dan. We consider them family:-) We call Dan our MiracleMan. He feels good & looks great! His recovery has been beyond amazing. He is doing everything on his own. He has been staying with us for the past 6 weeks as we are his caregivers. He has gotten the ok from his transplant team to return to his own place this weekend. I'll be a bit sad when he leaves but I am so HAPPY he will be able to resume his life. I'm not going anywhere as I will continue to participate in this support group. This group has been a blessing to me & my family. Hopefully I can offer some insight to those in need. God bless!!!

@kimestes I went back and read your previous posts and I want to say how sorry I am that you had to go through all you have been through. No child should have to go through that and for sure it would cause battle scars. I hope in time those scars will heal completely.

Your MELD is pretty low so I presume you will not yet be a candidate for transplant. In the meantime try to take the best possible care you can of yourself. It's great that you are now getting exercise. I always have hated exercise but I am forcing myself to do it these days. I am post-transplant 4+ years. I know I need to maintain a decent weight and I have gained since the pandemic began so I am exercising and trying hard to exercise some self-control over eating. I started exercising when I realized I would eventually be having major surgery. I knew that the better shape I was in, the better my recovery would be, and I had an amazing recovery. I wish the same for you if/when you eventually qualify for a transplant.

The exercise bike is a great exercise to start with, as is walking. Both are things that you can start at your own pace and gradually increase the effort and length of time. I really push myself when I take walks and am doing a bit over 3 miles an hour and generally walk just over a half mile. Not impressive for many people but it is for me, plus I am short so I need to take more steps! I have an activity monitor so I have goals set there and that spurs me on. I strive to meet my goals each day.

Other than fluid retention, what other symptoms are you experiencing from cirrhosis? I had lowering platelet counts, very shaky hands, and hepatic encephalopathy (HE) episodes, plus some other vague symptoms. The HE episodes were what brought my problem to a head.

I hope your appointment on the 28th goes well and that you will tell us how it went, and keep us abreast on how you are doing.
JK

Thank you for your inspiring story. I'm now on a gaining weight diet. I've been this size before, but don't have as much muscle this time. The Dr. Told me I was going to die. I saw the situation the next day, and she gave me calorie and protein goals to meet. So far I have mostly exceeded those goals! Yay!

@stella25, I am feeling such joy in hearing about your son. When I was diagnosed with PSC, my GI said that patients with PSC generally do well after transplant because they know far in advance and can begin right away to make healthy living adjustments. I don't know if that is scientific, but it sure worked for me.
I ask you to tell your son that naps are good, and to listen to his body because it will tell him when he is doing too much. I asked one of my transplant docs at my 10 year anniversary, what I needed to do to live another 10 years. His reply: No alcohol. Take meds. Get labs.

Stella, You are most definitely wanted and needed here on Connect. As a caregiver and a mother, you have a unique experience which will benefit others. You don't need to limit your messages to the Liver discussions. Words of hope and encouragement are always welcome.
When things calm down for you, I want you to consider sharing your story as a caregiver in: Organ Donation and Transplant: What is Your story? https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

I had a liver transplant 9/2013 at Mayo. Would be willing to share my experiences with others. I am doing well presently and working as an RN part time.

I go there February 7-10 for follow up

Yes