Liver transplant - Let's support each other

Hi I’m Paula 62 just found out a week ago my sister 57 needs a liver transplant,I want to donate part of my liver I’ve researched and feel Mayo Clinic is her best chance of survival.I’ve spoke to several staff and filled out forms,I’m trying to educate myself on as much information as possible,feeling overwhelmed and need advice if you think you can help please let me know ty

Dan goes in for labs & clinic visits biweekly & they adjust his Prograf based on lab results. His transplant center is currently allowing 1 visitor in so I was able to be with him the entire time both pre & post transplant. They let me wait in his room during the procedure. His surgeons & nurses called me with updates every few minutes. I'm very grateful for text messaging. Throughout his procedure I was texting family & friends with the updates so I now have the entire day documented:-) The staff at his center are just incredibly amazing. Super heroes in my book. Dan started driving again last week. His coordinator said he could go back to his apartment any time now. We plan to have him stay with us through the holidays. It just warms my heart to look at my son & see a healthy & happy face! It certainly is an emotional journey to transplant. Dan was calm & so ready for it when he received the call that Sunday morning at 4:00 am. With all the craziness that happened in 2020, it wasn't such a bad year after all!! Blessings to all those waiting for their transplant. Keep in faith & remain hopeful. Miracles really do happen:-)

Hi, Stella. This is wonderful news! I am happy to hear that your son has received his liver transplant and is doing well. and just in time to be at home for the holidays!
Thank you for your kind words. I don't meet many others who have PSC, so it has been my special honor to walk beside you during this journey.

Prograf, prednisone, Cellcept were my medications after my transplant. I now take just the Prograf and Cellcept. Your son will be momitored by his transplant team and they will determine what and how much medicine he needs. Be aware that his dosages will probably need adjusting for a while and this is not unusual.

Stella, Were you able to see your son prior to or post surgery? or Were you nearby virtually? Is there anything that would have better prepared you for your experience?

Hi Rosemary, I have not been on in a while. I wanted to let you know my son was transplanted November 22. The transplant procedure went exceptionally well. My son is doing remarkable in his recovery. We could not have asked for a better outcome. Thank you so much for all your support. You certainly were a wealth of information regarding PSC when I first joined Connect. My son is now taking Prograf, pred & Cellcept so I may have questions as well. Happy Holidays!! Xoxo

@mmr1984, I would like to invite you to join with other liver transplant patients in this discussion. I am aware that you have questions about tacrolimus, prednisone and cellcept. Those are some of the medications that many of our members with liver transplants are taking and would be able to see your questions here.

@mmr1984, Would you tell us a little about yourself? How long ago was your transplant? How are these medications affecting you?

@racing212, Hi, I hope that you are doing ok. I am glad to hear from you, and that you are going to be able to keep up to date with your care. So important!
September does give you some time to prepare for your visit. I know that you have a well established pattern of travel and lodging already, but if you want some resources or to connect with others about travel to Rochester as your visit gets closer, let me know.

Do you have a schedule of appointments yet? Is there anything new that has been added to your routine testing?

Hi all. I go to róchester Sept 21 and 22 for a follow up on my liver.

@athoub, I want to check in and let you know that I'm thinking about you. You are welcome to drop in anytime, you don't have to wait until you get a story together. In fact, you can simply read the conversation and see if there is something that you might find interesting to you. You might even want to post a response or a question about living with a liver transplant.
Hugs.

@jdlogan65 that’s amazing that you got a transplant so quickly. Your MELD must have gotten high before you were listed. Were you feeling reasonably well? I see that you were having radiation treatments, I don’t know much about HCC, I had non-alcoholic cirrhosis.

I too have read that people with very active immune systems can be at a disadvantage. It seems as if they are still grasping at straws trying to figure everything out.

It does seem as if many of us will eventually get COVID unless they come out with a good vaccine relatively soon. This is particularly true for those who have to go out. I had not been out of my house except to take walks for 3.5 months but I did venture out today to do 3 quick errands. I was very glad to see everyone wearing masks, and the places I had to go to had excellent controls in place. I live in NH and NH is one of four states seeing a decline in cases. I guess what is being done is working.
JK

@svezir, There are not many of us with PSC so I am equally happy that we have met here on Connect. I hope that your recovery goes as smoothly as mine did. I was away from my home in Kentucky and at Mayo Rochester for 3 months. On post transplant day 21 my husband and I were dischared from outpatient care to begin our drive home. I can assure you that I am going to be thinking about you and the wonderful reunion with your family!
In the meantime, relax and be easy on your body as it heals.

If you want some reading materials to have with you as you travel, Here are some suggestions:
https://connect.mayoclinic.org/discussion/changes-after-transplant/
https://connect.mayoclinic.org/discussion/post-liver-transplant/
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
Pages>Transplant>Newsfeed https://connect.mayoclinic.org/page/transplant/tab/newsfeed/

Pages>Primary Sclerosing Cholangitis (PSC)>Newsfeed https://connect.mayoclinic.org/page/psc/

@svezir, All of us transplant recipients share similar yet different recoveries. You are always invited to participate in any of the discussions, anytime.