Liver transplant - Let's support each other

@jodeej
Hello Jodee and Tim
The blessing is mine , I meet you on connect. I followed your lead on Tims issues. Though our problems were different but the same. You allowed me access to y’all journey. I learned from y’all on what to expect and I could prepare myself. With the help of Lisa and Dwight who was also ahead of me on there journey. Meeting you and Tim was awesome. I was so pumped up when I meet y’all and saw how Tim was doing. Y’all gave me a huge lift. The continuous conversation are valuable to me. So thank you. You continue to help others. True Blessing.
Love and prayers
God Bless
Jerry Drennan

mnemeth318, I am happy to hear that you are recovering well. It if fun, isn't it, to count the days past transplant surgery instead of days waiting? Like counting blessings and more blessings!
I like your 90% - 10% analogy 🙂 It is easy to be too eager as we wait for the body to play catch-up with the new energy and strength that come with a healthy organ. I still have a tendency to overdo and then I need to step back for a slowdown period. My husband is very watchful and he will remind me to 'take it easy' at times.

I want to share with you something that I like to share with new recipients. I guess you already know many of the tips, and might even be able to add a few (Consider this an invite to do so.)
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/
Did you experience any difference with the 2nd surgery procedure vs the first surgery procedure and recovery? Was it an easier process or more difficult process for you?

Jerry, Now that you have received your transplant, I want to share this with you.
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/

Stella, It also took between 1 - 2 years for me to have a PSC diagnosis. I was just over 50 then.
I was 60 when I received my transplant from an anonymous deceased donor. And the time in between was a mix of ups and downs. I was also told by my GI when it was time to go to the liver transplant team for evaluation, and I was both comforted and frightened by that.
I know that we are a rare group, and that is how I found Mayo Connect. I wanted to meet someone else who had a transplant due to PSC.

@jerrydrennan your faith and attitude are an inspiration to me. I'm so glad we met!
Blessings,
JoDee

@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

@mnemeth318 it sounds as if you are doing great! You are like me though, when I feel good I tend to overdo and pay for that the next day. Try to keep a rein on that, and I hope you feel better every day.
JK

@stella25 most of us who have had cirrhosis and liver transplants have had other causes, but we too can help if you have questions not directly related to PSC, Rosemary knows so much about all of that, and is the expert on PSC. She was fortunate in not having HE episodes, whereas I did have them.

When I was finally diagnosed with cirrhosis after almost a year and a half of not knowing what my problem was, I went to a hepatologist. She said I probably had cirrhosis for 10 years, cirrhosis takes a long time before presenting itself. I had some vague symptoms that were not attributed to cirrhosis at all. So, it’s not unusual that your son had it for a long time also. I then realized that my shaky hands and diabetes started just around the time that the hepatologist indicated.

I had my transplant in September 2016 and have been doing well ever since. I hope your son becomes a candidate soon and doesn’t have to wait too long for a transplant.
JK

Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from surgery and 19 days removed from my hospital stay. 🙂 Yes, since about day 2 I have been exhibiting the energy to act more independently, however, in that zeal I have found myself at times, straining what little original muscle I do have around the right side of my abdomen. (The result of two liver transplants in 6 years.) So in the end I would say I have 90% good days but then get laid up for the other 10% for having done too much with the 90%.

Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.