Liver transplant - Let's support each other

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

@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?

@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?

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

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?

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 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

Hi Paula, thank you so much for considering being a living donor to your sister. You may be rejected as a donor due to your age. Many transplant centers have a cut off age of either 55 or 60 for liver donors. There are a couple who have raised the age limit to 65. The reason for the 55/60 cut off for liver donors is they have found the recovery for the donor is longer the older you are. The transplant coordinators want only the best possible outcome for both the recipient & the donor. Keep us posted. God bless. xoxo

Ty so much for reply,

@paulapartyof1, Welcome to Mayo Connect. Your sister is fortunate to have you to support her and to consider being a living donor for her. I transplanted at Mayo Rochester in 2009 with an anonymous deceased donor, so I have no firsthand experience about the living donation. I do know that at Mayo everyone is treated individually and that there are many variables to be considered. Only the transplant team can make those decisions, and answer your specific donor related questions. I see that you have already completed the first step - the forms and communication.
Here is some information from Mayo about their living organ donor program.

- Living Donor Toolkit -
https://connect.mayoclinic.org/page/transplant/tab/resource-36/

- Living-donor transplantation - Mayo Clinic Transplant Department
- Be sure to view the informative 1:50 min video: Living Liver Organ Donation
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

- Nondirected Living donor transplant
https://www.mayoclinic.org/tests-procedures/nondirected-living-donor/pyc-20384850

Paula, What are some specific questions that you would like to ask of our living liver donor members?