Primary Sclerosing Cholangitis (PSC)
I’m told I need to have a partial liver transplant. I do have a Donor. My question is: should I get a second opinion ? I have an appointment with Mayo Clinic. I heard that they are the best.
I’d love to hear from people that had the partial liver transplant. Are you glad that you had it done? And are you getting a better quality of life.
Interested in more discussions like this? Go to the Transplants Support Group.
Welcome to Connect, @monty49. We would love to hear more about your transplant story. Perhaps you could share it on this discussion thread:
– At home with my new liver transplant https://connect.mayoclinic.org/discussion/at-home-with-my-new-liver-transplant/
@monty49, Hi Julianne. I extend a delayed Welcome to Mayo Connect. I am thrilled to see that you have joined this conversation about PSC. Congratulations on your transplant!
I, too received my transplant at Mayo, Rochester (2009) I was sent to Mayo from Kentucky because of the complications that developed with my PSC. They are the #1 experts for PSC.
When I was first diagnosed with PSC, I was frightened, and alone. I would have welcomed the opportunity to chat with people like yourself. So, I invite you to look thru our discussion threads, and share any information that you are comfortable to share.
Julianne, we have recently experienced an increase in activity relating to PSC. Would you mind sharing the link to the PSC Partners group?
How has your life changed since your transplant?
@jacinta, I am sorry for you to be feeling sick. But, unfortunately that is the course of the PSC journey. I hope that the time until your appointment passes easily for you.
When I was waiting for my transplant, I used to ‘dream’ about my life after the transplant – what I wanted to do, where I wanted to go, etc.
Jacinta, What are some of your ‘dreams’ your life after the transplant?
I was diagnosed with PSC also ! Diagnose in 1993 ! Liver transplant 2001 , Live donor , my23 year old son !
It has been an amazing journey , a couple of valleys but have done so well for most of it ! God has truly blessed me !
@sandyblair, Good Morning! I feel like I’m answering the phone – your message popped up just now. I am smiling, and feel such peace and happiness right now because of your reply. Thank youI
What are a few of the blessings that you have experienced as a result of your son’s loving living liver donation?
I look forward to hearing from you.
Before I retired from work , I would take a basket of candy and give it out and tell new people my story! And I always called my son , my donor and thanked him for my life ! A lot of times I give him a gift !
Since retirement, I talk to a coordinator and ask them to thank everyone at the Mayo Phoenix! Still call my son !
I had 3 grandkids when I had my transplant in 2001 ! I now have 10 grandchildren and have watched them grow ! The oldest is 17 and a senior in high school ! The youngest are 3 year olds , 2 of them , separate parents !
I have traveled with sisters on trips we call sisters reunions !
I have worked til I retired in 2014 at Walmart amidst being exposed to possible germs ! I have truly been blessed !
@sandyblair, That is a wonderful act of kindness that you are doing by sharing your blessing with others. I am sure that they enjoy the candy! And I know that your story is amazing – and will encourage other people to think about Living Donation.
I wish that I had known you back in 2001. I did not know anyone with PSC, and I did not know anyone with an organ donation. You would have been able to help me understand what I was going thru. But, I am happy to meet you now, and I getting to know you.
@sandyblair, I want to share a helpful hint with you in case you want to direct your reply to a particular person. Just highlight their @name, then do a copy then past in the reply box. It took me a little practice before I could do it because my hands still get shaky from my meds.
Do you get shaky or have the trembles after taking your transplant medications?
It is a blessing to get to share my story ! I have been on Prograf since 2001 and have never had any side affects ! What do you take ?
@sandyblair, You are amazing! So many beautiful grandchildren to enjoy. I have 1 granddaughter who will be 5 in December. My son, her dad/mom got married 4 months after my transplant in 2009. One of my blessings was to get to be at the wedding.
I, too enjoy travel now that I am well and we have retired. We like to hike, and we plan our visits to the National Parks. Where do you and your sisters like to go for your sisters reunions?