@amyintucson, I want to extend a welcome to Mayo Connect. I want you to know that you are welcome to participate in any of our Connect - GROUPS, PAGES, EVENTS, CHAMPIONS - that you will see across the top of this page.

There is an event happening on Tuesday, 24th. You may or may not be interested in. It is about organ procurement. In all honesty, I could not have watched this / faced this content 9 years ago when I was waiting, and newly transplanted. However, I want to share the link in case you or husband are interested.
https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/
We are here any time if have questions, or simply want to talk.
Are you waiting for a transplant?

Rosemary

Hello everyone. I have been lurking for a few months now and am on the liver transplant list at Mayo-Phoenix since 2/2017. I was diagnosed with sarcoidosis - concentrated in the liver - in 8/2008. We have been monitoring and dealing with symptoms since then I have had several procedures to band esophageal varicies. My liver started as enlarged with the sarcoid granulomas and advanced to cirrhosis. Waiting is difficult but I know there are many others who are sicker than I am and my time will come.

@anyintuscon. Welcome to the forum. I have found it to be very informative and helpful, and supportive. I had a liver transplant in September 2016 and have been doing great. The cause of my needing it was non-alcoholic cirrhosis. I was put on the list as a candidate in June or July of 2015. When I was transplanted my MELD was 28 which was lower than typical in the northeast. I was fortunate, maybe because I am blood type B, which can help. All of the Mayos have wonderful reputations so you are in great hands.
JK

@amyintucson, I love that term, "lurking" in this context! That is what I did before I joined. I was looking for someone 'like me' after my transplant in 2009. I have a liver/kidney transplant. (Primary Sclerosing Cholangitis -PSC) I transplanted at Mayo Rochester. We have patients from many areas, and I am constantly learning and being inspired by all of our members.

Waiting is difficult. "Day by day" and "One step at a time". All of our members are part of this journey and we are sharing and encouraging each other as we move along. We look forward to walking with you.
Rosemary

Hi @amyintucson, Just checking in. How are you doing?

Hi all - been having a rough last 2 months. I have a follow-up at Mayo/Phoenix on Friday. Been losing weight as I have not been very hungry plus the Lactulose causing diarrhea. i don't get to check here often - depends on my energy/concentration levels.

Hi Amy, thank you for taking the time to pop in. I'm so sorry to hear that life has been throwing extras challenges at you. I hope that they can make suggestions on Friday at your follow-up to help with your appetite and the diarrhea.

@amyintucson I don’t recall your history here. Are you a transplant candidate? I know the trials of lactulose, hopefully you are a candidate and a transplant will happen soon. After my transplant, when I was still in some serious discomfort, my husband would cheer me up by saying “no more lactulose!”. I wish that for you, with a wonderful recovery.
JK

@amyintucson, It is good to hear from you. I understand why you have not been checking in, and I am sorry to hear that you are experiencing a rough time. Unfortunately that is what happens. I want to assure you that things will be better after you get your transplant. Our diseases and our journeys might all be different, and our waiting and our recoveries might all be different, but the hopes for the future and undiscovered strengths will carry you through.
I send my thoughts to you as you meet with your team on Friday.
Rosemary

I am liver transplant candidate at Mayo/Phoenix.