Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

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

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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

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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:-)

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Profile picture for stella25 @stella25

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

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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?

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Profile picture for Rosemary, Volunteer Mentor @rosemarya

@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?

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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

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@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?

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Profile picture for racing212 @racing212

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

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@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?

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

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Profile picture for athoub @athoub

thank you for guiding me to this awesome group ... soon I will share with you all my story and I hope to be an active member

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@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.

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Profile picture for jdlogan65 @jdlogan65

Congrats Mr Parker! I have had my liver for just over two years. The transplant team in Phoenix saved my life. I was fortunate enough to get a transplant on the day I was listed! I am so grateful to the people who made my life whole again. Mayo was recommended by someone I talked with at UNOS or I would not be writing this now. I was diagnosed with HCC which was treated with radiation prior to the transplant. This has been a difficult journey for me and my caregivers. Everyday is a gift now. You find out who really loves you because this is not easy. Scans every 90 days, weekly labs, pills, pills, pills. Everolimus, no Tacrolimus. Oh geez your kidneys are getting hammered by the drugs. It can be a roller coaster! My wife of 14 years said “I didn’t sign up for this”. We are splitting up.
Now we get to deal with this SARS-CoV2 pandemic? I have been vigilant even prior to COVID-19 by self quarantine in my vehicle until my appointments. LabCorp and my local doctors are using the same criteria for face to face procedures or telemedicine. I was worried about catching the virus since we have suppressed immune systems. I am not as afraid of contracting the virus as I was because immune suppression could be a positive thing. I have read mixed reviews on this one. The people who fair well seem to have a controlled immune response. Someone help me out here. I am taking every precaution but many misinformed people who are spreading this don’t seem to care. It’s almost inevitable that eventually we will contract this virus unless a vaccine or treatment is found.

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@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

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