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Mon, Feb 25 1:49pm · Elevated ammonia levels in Digestive Health

@contentandwell My son was diagnosed with Primary Sclerosing Cholangitis a little over a year ago. At the time they did MRCP, ultrasound, fibroscan, etc. which indicated he was stage 4 cirrhosis. They removed his gb last October and did a liver biopsy at the same time. Biopsy confirmed the stage 4 diagnosis. He decompensated shortly after the cholecystectomy. During the holidays he was in the hospital twice. He had a blocked bile duct and an infection. At the time his MELD was 34. After 2 ERCPs and a couple rounds of antibiotics he stabilized. His MELD right now is 17. He'll be transplanted at the University of Utah. He's blood type A so a little bit of a disadvantage. His weight was down quite a bit. The transplant team has him eating frequently throughout the day to gain weight which he has put on about 18 pounds in the past month. Plus they want him taking in 100 grams of protein a day. Believer it or not, it's not that easy. I'm sorry you had to go through the HE episodes. Must have been extremely scary for you & your family. Hopefully we don't have to face those. Thank you for sharing your story. I'm sure I will have more questions for you as we continue our journey. I wish you blessings and continued good health:-)

Sun, Feb 24 10:46pm · Elevated ammonia levels in Digestive Health

Thank you @contentandwell. I remember you posting not long ago about your extreme dislike of lactulose:-( I'm glad you mentioned xifaxan. That was the other medication my son's doctor told us about. She did say that would be her first choice to treat HE if needed. Congratulations on a successful liver transplant! My son is stage 4 cirrhosis. He completed his evaluation for transplant a little over a week ago. Not sure if & when he'll be put on the list as is the case with PSC patients his MELD fluctuates.

Sun, Feb 24 10:47am · Elevated ammonia levels in Digestive Health

@kanaazpereira I don't know much about the use of lactulose. It came up for discussion with my son's doctor in January for prevention of hepatic encephalopathy. My son who has PSC has not presented with HE symptoms. His doctor brought up lactulose as a possible treatment down the road in the event he should begin to have HE episodes. I would be very interested to hear what the others have to say about it's use & side effects.

Tue, Jan 29 9:36pm · Q & A: Ricky Safer, CEO of PSC Partners Seeking a Cure in Primary Sclerosing Cholangitis (PSC)

@janicemary My son is the one with PSC. He joined the registry last year shortly after he was diagnosed. We considered attending the conference this year but he is going to be evaluated for transplant next week so it's probably best for us not to make plans. How are you doing with your PSC? Have you been transplanted? My name is Mary. I would love to hear your story if you have the time.

Mon, Jan 28 9:47pm · Q & A: Ricky Safer, CEO of PSC Partners Seeking a Cure in Primary Sclerosing Cholangitis (PSC)

@rosemarya Yes, definitely check out their website. They do a great job providing information & resources. They also sponsor an annual PSC conference. We've not gone but I heard they are amazing.

Sat, Jan 26 10:13pm · Liver transplant support group in Transplants

@jodeej We welcome your blessings! Thank you for your encouraging words of kindness:-) I hope your husband is doing well and finding peace & happiness with the wonderful gift of life he has been given. Prayers for continued good health!!

Fri, Jan 25 10:38pm · Kidney transplant - The Journey from the Donor's Side in Transplants

@hopefulgirl I can read in your words how passionate you were about donating. I feel your disappointment. I'm glad you trust in God. He has a plan and I'm guessing there is something bigger & better in store for you. You are a super hero to all of us waiting for a transplant. I commend you for your courageousness & generosity. Your selflessness is beyond measure. God bless you.

Fri, Jan 25 10:18pm · Liver transplant support group in Transplants

Hi Rosemary! I meant to tell you earlier my name is actually Mary. Stella is just the sign on name I used to set up my account. I can't tell you how much it means to me that you have taken a special interest in my son's case. You have already been a wealth of information to us and it's comforting to know you will be there as we move forward:-) We are excited for our evaluation. Me, I'm a bit terrified as well. Your support is truly a blessing we are extremely grateful for. Thank you to all for sharing your stories. I'm honored to be a part of this family:-) I will keep you posted every step of the way.