Badges (1)


Member has chosen to not make this information public.

Posts (34)

Thu, Feb 27 7:58pm · Liver transplant support group in Transplants

My son has had 5 ERCPs in the last 2 years. They always give him anesthesia. He has never experienced a problem with any of the procedures. He is always prescribed an antibiotic to avoid infections, pancreatitis, etc.

Mon, Feb 10 8:22pm · Liver transplant support group in Transplants

Hi Rosemary! Congratulations on your 11th anniversary!! You are amazing & such an inspiration to us all. I had so many questions when my son was listed for liver transplant a year ago. You were a huge source of comfort as you graciously answered those questions & extremely generous in sharing your own experience with all of us. I am forever grateful to you. To update you on my son. His MELD was at 34 when he was listed. It has since dropped and has remained fairly steady between around 14 & 17. Of course this makes it almost impossible for him to receive a deceased donor's liver. We have been reaching out to family & friends for a potential living donor. So far we have had 8 donors come forward. Unfortunately, all have been rejected for one reason or another. We continue our search & remain positive & hopeful. I am in complete & total awe of the individuals who have offered. True hero's:-) My very best to those of you who have been transplanted. May good health shine upon you. Prayers & love to all those waiting to be transplanted. You are not alone. We are with you:-) xoxo

Aug 30, 2019 · Liver transplant support group in Transplants

Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.

May 28, 2019 · Liver transplant support group in Transplants

@rodney9999 My son with PSC is on the wait list at the University of Utah. Currently they do not transplant high risk livers. If & hopefully when they change their policy our son would accept a hep C liver if one became available. Thank you for sharing this post. I wish you all the best on your journey to complete recovery:-)

Feb 25, 2019 · 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:-)

Feb 24, 2019 · 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.

Feb 24, 2019 · 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.

Jan 29, 2019 · 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.