Liver transplant - Let's support each other

@msgtrebholtz, Small world! I do know Dr Poterucha, or at least I remember seeing him when I was in the hospital in Feb. 2009! I I was transported to Mayo Rochester from ICU in KY, and on my first morning, I remember seeing a figure in white holding a clipboard and standing at the foot of my bed. He removed my feeding tube, and told me that if I didn't eat, he would have to reinsert it. Later my husband told me who it was.
I was sent to Mayo Rochester because of my PSC. I return annually for my check-up and I celebrated my 11th transplant anniversary this past week! You are in the best place for your care.
What is a surveillance group? Is it a research?

Not sure were to start so I’ll just jump in. I’m Mike 46 yrs old and live in KS. I had my colon removed in 2016 and now have a pouch due to UC. I was diagnosed with PSC in 2008 but really started showing symptoms about two years ago and was referred to Mayo in Rochester. Someone here mentioned Dr. Poterucha, who is also my lead. I have been blessed to have a living donor and through her telling me we are targeting a May 22nd transplant. I haven’t heard this from Mayo yet though. This leads me to my questions.

1. How soon do they usually let one know when they are scheduling the surgery?
2. With Covid restrictions to no visitors, would it be more beneficial to have my primary caregiver there pre or post surgery (more in terms of mental and spiritual support)
3. Once released from the hospital and at the gift of life house, how much help does one need with basic life skills like hygiene and cooking etc? And how functional have those of you been after released from the hospital?
4. Any pointers for what to pack without overdoing it?

Thank you all

@frmike, Good Morning, and welcome to this discussion. You are welcome to join in anytime and anywhere on Connect, and I invite you to continue to do so. I had my transplant in 2009 at Mayo Rochester due to PSC. I did not have UC, however I did experience acute kidney failure and that resulted in a liver and kidney transplant. My donor was a deceased anonymous donor.

Here are some links that I want to share while I open this discussion for others to offer their input and experiences.
-Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
-Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
-Primary Sclerosing Cholangitis (PSC)
https://connect.mayoclinic.org/discussion/psc/

- “Preparing for Surgery”.
https://connect.mayoclinic.org/newsfeed-post/preparing-for-surgery-tips-for-your-wait-on-the-list/.
- Primary Sclerosing Cholangitis (PSC)Newsfeed
https://connect.mayoclinic.org/page/psc/

@jacinta, I am thinking about you this week. I hope that you get some answers and a treatment plan that will work for you.
It must be hard for you to go thru this with your family at a distance. My mom was in stages of dimentia when I was progressing with liver failure. So, even though she was 'here' and just 120 miles away, she was not able to be with me. That was extremely hard for me because I couldn't be with her and she couldn't be with me. We needed each other. So, in a tiny way, I have some idea of what you are feeling.

Is someone with you as a second set of ears and who you can talk to?
Jacinta, Have you been evaluated for transplant yet? How can we help you?

Hello. My brother received a liver transplant a month ago (April 2020). I am one of his caretakers. There are so many things going on with his body (and mind) after the transplant. We are not sure what is "normal" and what is not normal under the circumstances and/or what will be lasting or is transient? We do not want to call the post-transplant coordinator every day and become a family that cries "wolf" for every new sensation or concern. We were hoping to e-talk with others who have gone through a liver transplant and/or their caretakers and get some experiential input. Is this a good place for such exchange or does anyone have any resources to recommend for such questions? Thank you.

Hi - congratulations to your brother! What kind of symptoms is he having? I had side effects from the drugs, notably the high prednisone dose. For awhile I couldn’t finish a sentence, and my husband had to follow me around and turn off the faucet after I washed my hands. It gets better! I’m two months post transplant now and back at work.We always referred back to the ‘transplant bible’ to see if symptoms were a sign of rejection. If not and it didn’t seem serious I reviewed it with the doctor during my clinic visits. I wouldn’t be afraid to contact the transplant coordinators. They’ve been through just about everything with other patients and are a wealth of information. If nothing else, they can put your mind at ease.

@xplantsister, I want to welcome you to Mayo Connect. We are patients, and we are here to share our experiences to support and help each other when you need someone who understands what it is like to live with a transplanted organ. We do not provide medical diagnosis.
Thank you for your concern and care for your brother during his recovery.
I am a liver and kidney recipient (2009) and I would like to say that many of us share similar experiences with each other, and other share different experiences. So normal can be a broad range of things. Will you share more about your brother's current situation. What kind of 'things' are going on with him that concerns you? What has your brother's doctor said about his current situation?

Hi,
This is the first time I have tried to get onto the online liver transplant support group. Not sure exactly where/how to connect. I live in Tucson, AZ. I experienced sudden liver failure two years ago; have been on the liver transplant list for about 1-1/2 years. Very tired of the prednisone now but nothing I can do.

Wow - two months post-transplant and you are back at work! That seems amazing to me. I am still waiting for transplant. I have an amazing caregiver, though she has recently had some heath problems of her own, like a lumpectomy for breast cancer. I am worried about being a burden to her after transplant. I think it takes an awful lot of calm and patience to be a caregiver, especially when dealing with someone on prednisone, like I am. Even I can't predict my reactions to fairly ordinary things sometimes.

Hi,
I just joined this support group and read your message. Just wanted to say I am wishing you the best, and I hope all goes well for you. Hope you have enough support here tin the US o get through whatever you need to get through. I am also waiting for liver transplant, I think worry must be a very normal response. But Mayo people really seem to know how to help us deal with whatever comes up.